No; it's not about Terri Schiavo anymore (Mary Johnson)

[Banazir]

No; it's not about Terri Schiavo. And it hasn't been for quite awhile.

It's about us.

It's about each of us who thinks "I wouldn't want to live if I were a vegetable." It's about each one of us who thinks, as one blogger wrote, that Michael Schiavo has been "chained to a drooling shitbag for 15 years."

But it's also about those of us who are those vegetables, those drooling shitbags. Those of us who want to live but know we're a burden to our families. Those of us who fear "do not resuscitate" orders. Those of us who use ventilators, and who use feeding tubes. And those of us who can communicate with clarity only through artificial means.

How can the two groups of us -- those of us who live with severe disabilities, and those of us who fear such a fate more than death -- come to some common ground?

http://www.commondreams.org/views05/0322-20.htm

[DemBones DemBones]

1. We need more Mary Johnsons telling our side of the story. nt

[burrowowl]

2. There is a difference between

a liquified cerebral cortex and a severely handicapped person. Yes maybe there should be some legal clarifications made by Congress. However, medical discretion should not be overlooked, e.g., sometimes when the fetus dies in utero it can be less dangerous to let it go to term and at other times when it begins to putrify in the womb there has to be a D&E or as the Repukes would say a 'partial birth' abortion.
Anacephlic fetuses in some case can go 11 months before birth (no brain to trigger I'm ready to get out).
It is true that someone like Chris Reeves who has the money will probably live longer than someone without money. This is why we need universal or single-payer health care instead of going broke bombing and killing people.
There should also be recourse like Oregan's law to consentual suicide in dire cases.
Natural death, let us say that without modern science, e,g. TS's feeding bags (least cost $1,500 a day, each is unique in make-up and this is what is charged), I can see for someone who might be pulled through is okay, for elderly patients who manage to pull the feedbag tubes and consciously don't want them, who profits.
Looking at the U$ corporatist gov't, I can see why the lady is afraid.
Or the U$ in the 30's: eugenetics, making an experiment of black prisoners with syphillis, etc.

[Banazir]

6. Liquified cerebral cortex IS one kind of "severe handicap"...

...similar to children with severe unshunted hydrocephalus.

Nobody can draw a line just because it'd be convenient to do so. And I won't draw a line because I don't believe it ethical to do so. I don't define personhood in the narrow, ableist terms that many non-disabled and some disabled people do. And I don't think someone's personhood is defined by whether they'll 'get better' or not. Someone might be a very different person than they were before, but they are still a person.

The Oregon law isn't just for "dire cases" and has already been abused and used in questionable ways including caregiver coercion and people running around to more and more doctors after the first doctor sees signs of foul play. Similar laws in the Netherlands are passing down the slippery slope into allowing infanticide, and disabled people there are often afraid for their lives should they get into an accident. That is not the direction of progress.

One of the most important parts of the article to my experience is the fear that other progressives will abandon disability rights -- including this facet of disability rights which may be among the most important -- in disgust because of what Bush and other Republicans are doing to it. We're already abandoned by the right, what Bush is doing is pure show. But we're in danger of being abandoned by the left, as is evident in the other thread where someone put out a bunch of disgusting quotes by left-wing people about Terri. People who think that the 'right to die' should be somehow high on a disability rights agenda (whether they're disabled or not)... really don't understand disability rights.

[burrowowl]

10. A liquidfied cerebral cortex

means there is no there there.
NO IS NOT SIMILAR TO CHILDREN WITH UNSHUNTED HYDROCEPHALUS!
They still have a cerebral cortex and can live a certain quality of life.
I think you are not throughly cognizant of NO CEREBRAL CORTEX and THERE IS A CEREBRAL CORTEX. Hydrocephalics have fluid drained from a LIVING CORTEX to keep it alive, TS has NO CORTEX!

[Banazir]

11. Actually, some don't.

Some have a cerebral cortex and some don't, sometimes the fluid fills that much of the brain that they don't have much of one at all. I know people with mild hydrocephalus where it hasn't done that, but there are people with the severe kind who indeed have little to no cortex left: "Up to a certain point, the white matter changes are reversible, and often spectacular recovery is seen after shunting. If pressure is not relieved, permanent atrophy, first of the white matter and then of the cortex, develops. This causes spastic paralysis, loss of bladder function, and dementia. In severe hydrocephalus, the cortex and white matter may become paper thin and semitransparent such that the head transilluminates."

But at any rate, some of us actually consider someone with only a brainstem to be a living human being still, and yeah, a disabled one at that. Just as someone with that severe kind of hydrocephalus, or hydranencephaly, or anenchephaly, is a disabled human being. Some of us don't just stick with the 'pretty' disabilities when we engage in disability rights work, hard as that may be for some others to believe. I wish it were more of us. You don't need, at any rate, to scream at me that she has no cortex. I know she has little to no cortex. What I'm saying is that doesn't make her any less of a person in my eyes.

[sandnsea]

3. Medical Autonomy

Your life, you chooose. If Terri were single, her parents would be next of kin and I would be supporting them.

Anybody who can express the thoughts in this post has at least some of their cerebral cortex. Different from Terri.

Disabled people are making Terri their poster child when she's the wrong example. They really ought to be making a stink about Baby Sun and the hospital making that decision, that's where the problem lies. Not with Terri Schiavo.

[illflem]

14. So you would support the parents

even if it was Terri's wish to die?

[sandnsea]

19. Who would say it was?

The parents and her family say it isn't. If Terri had no husband, there would be no one to say that she didn't want to live this way. So the parents and family would testify it wasn't her wish to die, the parents would be next of kin, and I'd support that. This is about medical autonomy to me, whatever decision is made.

[CoffeeCat]

4. I read through the article...thanks for that link...

...I'm understanding this issue better on a macro level.

Also, the article gave me surprising clarity on Tom Harkin's latest actions.

I really was torn up, because I did not understand why Harkin seemed to be siding with Tom DeLay.

Harkin has been a longstanding champion of those with disabilities.

I just didn't get it.

The article helped me to understand that his stance is helpful to those with disabilities.

That's very good news.

[Banazir]

22. Yeah, for the most part it's very different reasons.

For the most part there's very different reasons why disability rights activists (including left-wing disabled people) are involved in this case versus the reasons the far right is involved in this case. A lot of people conflate the two and assume unfortunately that if disabled people are agreeing with the right it's because we've been duped. If you scratch the surface, you find that the agreement is only superficial for the most part, and there are very different underlying reasons for similar actions.

[RaleighNCDUer]

5. It's about choice.

If someone wishes to live with such severe disabilities, that wish should be supported.

If someone wished to not be a burden, physical or financial, on their families, that wish should be supported.

My father died of Alzheimer's, after a mercifully quick decline of only six years.

If I am ever so diagnosed, I will blow my brains out.

My choice is to never be such a burden on my survivors. I am not, as it may sound, bitching about Dad being a burden. I lived too far away for his illness to impact me as a burden -- my mother did most the heavy lifting on that one. My decision was made years before, when I was looking at a possibility of spending the rest of my life in a wheel chair. I had to look at it and decide, could I live that way? Yes, I decided. But it made me think. What if I was blinded? Yes. What if instead of just my legs, it was my arms and legs? More difficult, but yes.

But if I were to lose my mind, lose myself? No, that's the limit. If I'm ever reduced to such a state I will have no artificial means used -- no feeding tube, no respirator. No heroic efforts when I begin to fade.

Today my back is improved, and I am relatively active and healthy, despite chronic pain. And I have come to the conclusions that will guide my health decisions for the future.

It is the choice I make about the quality of my own life. Everyone should have the right to make the same choice.

That is where we find the common ground -- in individual choices.

[Banazir]

8. Burden is a loaded term.

No... it's not about individual choice. And 'burden' is a loaded term, instead of focusing on the economic and social inequalities it focuses on the disabled person as a leech-like figure sucking the life out of other people around them. What social conditions cause any disabled person, no matter what the disability category, to be viewed in this horrible dehumanizing manner? That is the question we should be asking, instead of drawing lines as to what kind of life is valuable and what is not, what kind of life is tolerable and what is not.

Yeah, I've got a cerebral cortex. But I am cognitively disabled. I'm developmentally disabled and also have had brain damage later in life, so I have both the experiences of always-disabled and becoming-disabled. I have had people say they would rather not live like me, rather be dead. I don't care if they think that's personal choice, it's an insult. And it's why I wouldn't say the same about Terri. Ever. I may not be like her, but I'm not cognitively normal and I've had to live every day with the bigotry of the cognitively normal. I wouldn't ever want to extend similar bigotry to someone else, and if people think that "I'd want to die if I were like you" isn't bigotry, they're fooling themselves.

What is autonomy in a nation that devalues us so much? That puts us into institutions? That allows anyone to view us as burdensome? That values certain physical and cognitive abilities so much that 'better off dead' is acceptable, that this kind of debate about the value of any kind of person's life is acceptable? What is autonomy in the face of so much bigotry? Is it the illusion that we all live unconnected to each other? That is illusion.

I have spent time with and loved people with severe and profound developmental disabilities. With Alzheimers of all stages. These are people. To say "I would rather die than be like these people" is insulting and it is not individual. To say "I would not want to be a burden" is insulting as well, does not take context into account, is still not individual, voices a common prejudice. It's like saying better dead than queer.

To "lose one's mind"... let me think (no pun intended). Going day after day with no understanding of time, a random array of sensory impressions happening, little of it registering at the time, not in understanding, just reacting to the sensory impressions. No idea that language exists, no understanding of what language is. No idea what time is, what self is, what anything is. Fear, sometimes. Disorientation, sometimes. Nothing, sometimes. Other things, sometimes. Not all of it totally registering. Not much in control of movement, often sitting still for extended periods, or moving without intending to move. Not always remembering, sometimes remembering in patches, sometimes not at all, viewing the world in a way that is incomprehensible to the majority of people.

Or other times, experiencing things but very slowly. Reacting, but very slowly, only being able to move parts of the body. Reacting so slowly that others think it is random. Trying to get a point across, and being unable to. Understanding language one second, and not the next. Able to move voluntarily in one second, the same movement occurring involuntarily in the next. People on the outside can't tell the difference. Unable to respond adequately while they make important decisions, while they say and do despicable things, and talk as if nobody is there to hear them.

I have had people tell me they would rather die than live like that. They don't know what it's like to live like that, but I do. I have lived like that. It's just a way of living. I don't know what it's like to live like Terri Schiavo, but I would no more judge her life as unworthy of my or anyone else's living it than I would want anyone judging a life like mine as unworthy. And to say that it is individual seems to me a way of running away from confronting the kind of prejudice, fear, intellectual elitism, and systemic ableism that goes on. It's individual choice who a person marries, too, but "I wouldn't marry a n-word, I don't care if anyone else does, some of my best friends are/married n-words, but those n-words aren't racially pure enough for me" is still a bigoted statement, and using "individual choice" to mask the racism would be a bad idea. Ableism -- whether from disabled or non-disabled people, both are quite capable of it -- is just as real as racism and sexism, just as damaging, and way more openly accepted among progressives than it should be given what we're supposed to stand for.

We should be fighting the attitudes that make people think of anyone (themselves or others) as burdens, fighting the policies that make a person's 'care' rest entirely with one or two people, fighting the institutions that make our lives dismal, fighting the lack of social services, and so forth. The 'autonomy' of 'choosing death' is very low on that list. Yeah, anyone should be able to kill themselves (and anyone who can request it can already do it, and it's legal). But the "I wouldn't want to live that way" stuff shouldn't even be considered part of the disability rights agenda, it's antithetical to what real disability rights -- the kind that encompasses all disabled people, not just a favored few -- stands for. As one activist said, I have no interest in being part of a disability community that is only for the elite disabled, and question whether that's a true disability community at all.

[RaleighNCDUer]

25. That's well spoken, and carefully thought out

and it doesn't mean a damn thing to me. I don't care if you think it is an insult to you -- it is not about you and I am not responsible for your thoughts.

I am speaking for myself. It is my business if I want to end my life, and at what point I wish to do so. You might note that there is no movement for assisted suicide for those who are healthy and fully functioning -- they don't need help, and they end their lives every day.

I know myself well enough to know that I do not believe I am here to take up space. If I cannot interact with the world I would rather leave it. And that is my choice. And I'll be damned if anyone is going to tell me I do not have that choice.

Why should I be denied that choice simply if I am in no physical condition to effect it myself? And it seems obvious to me that the only way I can effect that choice is to arrange it before I am put in that condition. To that ends, exists the living will and the health power of attorney. They may not allow assisted suicide, which is why I would end my own life first, if possible, but they will prevent extraordinary measures to keep my shell alive.

As for considering disabled persons a burden. I only acknowledge that that is how I would see myself. I have worked in a facility with severely disabled people, and I watched my father lose himself.
But what do you think 'burden' means? My dictionary says: 1 - Something that is carried; 2 - Something that is difficult to bear physically or emotionally; 3 - A responsibility or duty. There is no definition of a burden being a hateful thing, or something to be despised. But while others may make other choices, I do not choose to be carried as another's duty and responsibility. I believe that freedom is being responsible for oneself.

You accuse me of bigotry. But it is not I who is making sweeping statements about whole classes of people. You are making the statement that anyone who disagrees with you is a bigoted ableist. I do not presume to speak for anyone but myself.

As for TS, whose cause has rallied the likes of Tom DeLay and Terry Randall (and you might consider what kind of people you are allying yourself with), she made the statement that she would not wish to live like this, if indeed she can be considered living at all. Her wishes should be respected.

[CoffeeCat]

23. Do you still have back pain?

You said you still have chronic pain. Is this back pain?

I just wanted to empathize.

I had a partial laminectomy (L4-L5) and my back is still troublesome. If I over exert myself, I feel it the next day.

I do understand what back pain is like. It can be consuming.

I hope you are finding some relief, and that you have good doctors looking after you.

Remember, bend at the knees! I have two preschool-aged girls. If I had a dime for every time I had to pick up their toys off of the floor, I could afford a new spine! :)

Take care,
TS

[RaleighNCDUer]

26. Same thing, only I've had three low back operations, one of them being

a laminectomy and fusion, L4/L5. I have near-constant back pain, and nerve damage/partial numbness in both legs. I've been told that any further work would only exacerbate the problem.

On good days, warm weather, I get around fine, I can walk and bike. I miss running.

I appreciate your concern, and you take care of yourself, too. Don't risk further injury and keep your weight down -- it helps.

Compared to the thread discussion, it's no more than a little inconvenience, but it did prompt me to think about such eventualities.

peace

[Trillo]

7. Why would those who fear DNR orders seek a default

of 'always resuscitate' that ends up, by law, applicable to everyone?

[Banazir]

9. Because...

...because it's way more common for disabled people to be pressured or tricked into DNR orders than the reverse.

...because we're considered by too many to be expensive burdens with low to no quality of life and better off dead, and because it's been shown that we always rate our quality of life way higher than healthcare professionals rate it.

...because death is more permanent and irreversible than life and screwing up and killing someone who wants to live is worse than screwing up and letting someone live who wants to die.

[Trillo]

12. "Then"

one middle ground is found by having 'resuscitate' orders.

I can understand how your first point might be true, there's a lot of trickery in the world, but it's by no means limited to the disabled. Curiously, for the non-disabled, trickery can and does lead to many non-desirous and unfortunate outcomes. Trickery is endemic in our world today.

The first phrase of your last paragraph is unprovable, and what follows is based on it. That is the great mystery. It does seem that there are some who believe the opposite.

I do find your second point intriguing and deserving of further inquiry. Perhaps health-care professionals are more judgmental than others. I believe 'resuscitate' as default meets the self-perceived quality-of-life issue.

To take a contrary viewpoint, many people throughout history have observed on the tyranny of life's travails for most any living person. Perhaps those who rate their quality-of-life highly are blessed no matter their perceived circumstance. The point is that just because someone appears non-disabled doesn't mean their life is all peaches and cream.

[undergroundpanther]

13. Banazir

If you ever notice it's ALWAYS the able bodied and able minded who are deciding for the disabled who is worthy of life and who is not,who's a burden who isn't,who is "too expensive" to maintain.

If you think on it EVERY human being is a burden on this Earth's"carrying capacity" for living beings..So who are we the biggest parasites and cancers on this ecosystem(species wise)to decide anything?

We are more burdensome than other more survival able creatures that don't need a civilization and systems to cope with life.We are very draining on this Earth, we drill away all the oil,and pollute the air,we kill off entire species of animals, lace the seas with pollutants,set off nukes,throw our trash everywhere,build our houses so the animals have no place to live, we pollute the darkness with artificial light, and punch holes in the ozone layer.If the Earth saw us like our culture views people who are hurt,human weakness,a state of dependency and disability,or'mind loss.. The Earth would have wiped us out much sooner..because we are killing her with our abuse.
apparently the idea of utilitarianism isn't found in nature.
Its a human invention made up by human bullies.

[cornermouse]

15. No.

Why would anyone want to pressure or trick a disabled person into DNR orders that they don't want? That's not what the Schiavo case is about.
Neither is your second paragraph.

The Schiavo case is about the fact that her husband says she told him that she didn't want to live in a vegetative state, but didn't say it to her parents. The fact that she didn't tell her parents this is not unusual. Typically, you don't tell your parents what you're thinking if it might be something that could hurt their feelings.

Its not about doing away with the disabled, its about leaving an avenue of escape for those who don't want extreme intervention without a realistic possibility of improvement.

The fact is, I'm hoping we can restore the republican's cuts and elimination of servies to the disabled once Bush is out of office.

[Banazir]

21. Some responses.

"Why would anyone want to pressure or trick a disabled person into DNR orders that they don't want?"

It's not a matter of why would they, it's a matter of why do they. And it's the twofold viewing of disabled people as a social/economic burden while also viewing our quality of life as too poor to be worth saving, an assumption we'd rather be dead. I know a lot of disabled and non-disabled people, and it's the disabled ones who have the DNR stuff shoved at them the hardest. I've known a lot of disabled people who have been refused treatment because of disability and assumptions about 'quality of life', some very openly stated. Some have died, others were fairly heavily damaged before someone did intervene. I so far haven't known a single person, disabled or non-, who was resuscitated and didn't want to be, nor have I known non-disabled people where the immediate assumption was they wouldn't want resuscitation. There's been a fair bit of study on this.

"Its not about doing away with the disabled, its about leaving an avenue of escape for those who don't want extreme intervention without a realistic possibility of improvement."

"Without a realistic possibility of improvement" = "severely disabled". It's about leaving an avenue of escape for people who don't want to live as severely disabled, which gets back to why they don't want to live that way, which gets back to a combination of discrimination against disabled people and prejudice about what such a life could be like.

"The fact is, I'm hoping we can restore the republican's cuts and elimination of servies to the disabled once Bush is out of office."

So am I, so is Mary Johnson, etc, doesn't mean we also want Schiavo dead just because Bush postures about wanting her alive (I don't think he really cares one way or the other).

[cornermouse]

29. You're wrong.

On your first rebuttal, you say there is a fair bit of study? Typically around here, a reference address/location for a study is desirable for obvious reasons. Where is it?

Typically the medical establishmennt is where you would look for the DNR. Are you saying that doctors, nurses, and medical ethicists are in the business of offing their disabled patients?

Your second point? Life without regard to costs? I'm not just talking about financial costs although they can be astronomical. If there is any remnant of consciousness or memory that remembers the ability to move, to think, to be close...how awful to be trapped in a body that no longer responds, to know that you have lost the things (people, freedom, life in general) that really mattered to you. That's torture. Wanting to avoid that has nothing to do with discrimination or prejudice.

At any rate, in Terri Schiavo's case (vegetative, remember?) it is not a matter of preserving life. It is a matter of prolonging death. It is a matter of warehousing human beings. It is cruel.

[Banazir]

30. A cite off the top of my head

Nevertheless, although euthanasia of people with severe disabilities clearly violates civil rights, child abuse, and homicide laws, widespread termination of life through the withholding of food, fluid, or other lifesaving care continues ("Medical discrimination," 1989). Decisions to terminate these lives are often "grounded in misinformation, inaccurate stereotypes, and negative attitudes about people with disabilities" (p. 149). While parents are typically the nominal decision makers, their decisions are often manipulated by professionals, and "in practice the doctors are often the prime movers in denying treatment" (p. 149).

Dick Sobsey, Violence and Abuse in the Lives of People with disabilities, 1994.

I'm trying to find the exact study he was citing there, but it's buried in a 50-page list of references and my visual scanning capabilities aren't all that great. Tracking down the book itself, though, would be a good reference for anyone on this kind of topic: It goes into a large amount of detail and provides a lot of cites of studies for those inclined to prefer those. (I've tracked down and read only some of the studies referenced because I don't have access to a university and I don't have a lot of money.)

[cornermouse]

31. Actually you can do a pretty good search on the internet

Even the most limited search on yahoo gets you the NCD. Although after looking it over, I saw at least a couple of statements that I know from personal experience are pretty much bare-faced lies.

Some other websites that you might be interested in looking at.

http://www.hospicepatients.org/hospic55.html

http://www.texmed.org/pmt/lel/legalada.asp

http://www.cchomenurses.com/page5.html

[enough]

16. A very interesting post, link and thread.

Making me think about some things I have been avoiding thinking about.

Nominating for "greatest."

[Tinoire]

17. Excellent article, excellent site

On edit - nominated for Greatest

Thank you for posting it, for making us more aware. I do not want to hear experts drone on for what is best for the disabled or any other specific group. At one time in this very country the "experts" also said that Black people were oh so happy picking cotton all day and not having a care in the world.

Despicable. Utterly despicable.

I am SO ashamed at the appalling lack of empathy coming from the so-called Liberals but to call these people Progressive is wrong. Capitalistic Democrats are latching on to that term because they noticed that a very outspoken group, truly progressive on human issues, was distancing themselves from a core that said obliterating a country to get one man was a great thing to do because oppressed women were being liberated (American-style). We look down on Muslim women, call their culture barbaric because we say they are "owned" by their men and how barbaric that is yet right here in River City, a woman is going to be mercilessly starved to death (instead of at least being given morphine or put on a heroine drip so that we can say we didn't do it like hypocritical Bhuddists who subscribe to not killing animals taking fish out of water and saying "it died all be itself therefore I broke no precept") and we raise not one voice to save her. Instead we give the choice of treatment, life and death to a man who had already replaced his chattel with a more functioning woman 1 year after the tragedy and has been in an eager rush for the last 15 years to move on- a man whose word we have reason to doubt but we don't care because seeing Terry Schiavo makes US feel uncomfortable and we want her so out of the way that we won't even entertain the thought of letting her parents attempt to get her the proper treatment she was denied by the man who owned her.

If Michael Schiavo loved that woman even one whit, he would have the minimal decency to allow her the care her parents begged for while pursuing his legal manouverings to free himself from her. I do not understand the hypocrisy. I do not understand cutting her parents off. I do not understand not asking Terry Schiavo what she wants - she can blink right? ASK HER! ASK HER EVERYDAY IF YOU NEED TO MAKE SURE THOSE AREN'T RANDOM REFLEXIVE MOVEMENTS BUT DAMN IT AT LEAST ASK HER.

I can't even talk about this without getting angry and upset at the unwillingness to believe anything except the he said/she said testimony of one man whose actions have not been consistent with love and true care. Sorry for ranting. I love this forum and welcome it as a respite from the stench upstairs. Ralph Nader, true to his progressive values, came out in support of keeping Terry alive yesterday. He is of course being crucified for once more daring to thrust our faces in our hypocrisy, but it was a bright note. Tom Harkin gets it. Jesse Jackson gets it. It's unfortunate people are so unwilling to even listen but it's not the first shameful time.

Thank you for the link and references... I just finished reading another of Mary Johnson's articles and plan to read more. Very enlightening.

Liberals and disability rights: Why don't they 'get it'?

(snip)

"These are people who know that the system is willing to kill for money; that's what they deal with every day in their advocacy work; but it takes a discussion, it takes connecting the dots for most of them to see why someone like me, someone severely disabled, might have a problem with legalized medical killing and might see it as not so terribly compassionate or progressive."

(snip)

"Liberals say, 'we support the social programs that you depend on, that you agree with -- and because we do that, we should have your unqualified support, even when we support every 'better dead than disabled' cause that comes along.' Folks on the right say, 'Look, we're out there on the protest line in Florida; we're fighting for the lives of people like Terri Schiavo, so we should get your unqualified support, no matter how much we cut the social programs you need to function and even survive.'"


(snip)

"Liberals -- and progressives, as I'd describe myself," saysBérubé, "have lost so much ground and so much public legitimacy over the past 30 years that it's quite clear we need new ways of thinking about the public sector and the common good. People need to begin to "read liberal theories of social justice in terms of disability issues -- putting the perspectives of people with disabilities front and center in a second wave of civil rights activism."

"To really 'get' disability politics means also to be a leftist," says Blaser, "to have a radical belief in human equality globally, across gender, ethnicity, sexuality -- and disability."

[BrklynLiberal]

32. Abstractappeal.com/schiavo

http://abstractappeal.com/schiavo/infopage.html

Why did Terri’s husband get to make the decision about whether she should live or die?

Michael Schiavo did not make the decision to discontinue life-prolonging measures for Terri.

As Terri's husband, Michael has been her guardian and her surrogate decision-maker. By 1998, though -- eight years after the trauma that produced Terri's situation -- Michael and Terri's parents disagreed over the proper course for her.

Rather than make the decision himself, Michael followed a procedure permitted by Florida courts by which a surrogate such as Michael can petition a court, asking the court to act as the ward's surrogate and determine what the ward would decide to do. Michael did this, and based on statements Terri made to him and others, he took the position that Terri would not wish to continue life-prolonging measures. The Schindlers took the position that Terri would continue life-prolonging measures. Under this procedure, the trial court becomes the surrogate decision-maker, and that is what happened in this case.

The trial court in this case held a trial on the dispute. Both sides were given opportunities to present their views and the evidence supporting those views. Afterwards, the trial court determined that, even applying the "clear and convincing evidence" standard -- the highest burden of proof used in civil cases -- the evidence showed that Terri would not wish to continue life-prolonging measures.

Was Michael the only person who testified about Terri's supposed statements on her views about living on life support?

No, others did as well, and when making the decision in the case, the trial judge took into account all of that testimony and additional evidence. As the Second District explained:

We note that the guardianship court's original order expressly relied upon and found credible the testimony of witnesses other than Mr. Schiavo or the Schindlers. We recognize that Mrs. Schiavo's earlier oral statements were important evidence when deciding whether she would choose in February 2000 to withdraw life-prolonging procedures. See § 765.401(3), Fla. Stat. (2000); In re Guardianship of Browning, 568 So. 2d 4, 16. Nevertheless, the trial judge, acting as her proxy, also properly considered evidence of Mrs. Schiavo's values, personality, and her own decision-making process.

from the Orlando Sentinel -

Column entitled "Terri's husband isn't the enemy, guardian says."

http://www.orlandosentinel.com/services/site/premium/access-registered.intercept

Here's a snip or two - columnist Mike Thomas speaking:

For answers, I turned to University of South Florida professor Jay Wolfson. He was appointed as a guardian ad litem for Terri in 2003 and prepared a report on her for Jeb Bush.

(snip)

Says Wolfson now: "Michael was adoring of her. One nursing home complained he was hostile and abusive of the staff in championing her care. She was immaculately kept. In 13 years, she never had one bedsore."

Is Michael after her insurance settlement?

Wolfson's report says that early on, Michael "formally offered to divest himself entirely of his financial interests in the guardianship estate."

Why doesn't Michael simply turn Terri over to her family?

From the report: "Testimony provided by members of the Schindler family included very personal statements about their desire and intention to ensure that Theresa remain alive . . . at any and all costs. Nearly gruesome examples were given, eliciting agreement by family members that in the event Theresa should contract diabetes and subsequent gangrene in each of her limbs, they would agree to amputate each limb and would then, were she to be diagnosed with heart disease, perform open-heart surgery. Within the testimony, as part of the hypothetical presented, Schindler family members stated that even if Theresa had told them of her intention to have artificial nutrition withdrawn, they would not do it."

Wolfson told me that when Michael heard this, he said: "That's it. I'm never going to let that happen to her."

Wolfson says the Schindlers later recanted their testimony.

[nothingshocksmeanymore]

18. I agree with much that Johnson says, but I also believe Schiavo's

wishes ARE being granted. Does that make me anti-disabled? The court testimony demonstrates that Schiavo made these statements after attending the funeral of someone who lingered with no quality of life.

It wasn't as though she said it in passing or as the butt end of a "What do you call a guy who hangs on a wall" joke.

She said it at the end of a somber experience ... one in which MOST of us would look into our hearts and see what we want for ourselves.

I COMPLETELY support federal review as Harkin recommends since state laws DO vary. Terri Schiavo DID get federal review as Johnson advocates.

I also think it COMPLETELY unfair for her to paint liberals with a broad brush since it isn't conservatives opening those non-profit hospices.

In her article she ADMITS that the causes and needs of the disabled go unnoticed by Republicans.

I am a liberal who not only advocates DAILY for the disabled, I cared for my father when he was ALMOST as severe as Terri Schiavo. Would I ever END his life without his permission? Absolutely not. Was he a burden to me? OF COURSE! It's hard to change the depends of a 73 year old man while he starts having diarrhea again while you're cleaning him up...having said all that...if life saving measures were what he wanted, I would have opted for life saving measures.

My father signed his DNR papers while he was healthy but AFTER a serious accident. DOes that mean he didn't mean it?

From the tone of her writing and the comments made by others on this thread, I am led to believe that even those with durable powers of attorney signed with instructions don't really want it.

Do we REALLY want to spark court cases challenging the intentions of EVERYONE? Because it won't just end with the chronically disabled.

DO we really want to FORCE people back to be cared for by families wherein abuse may have existed?


Anyone viewing the Schiavo case should look at the controlling and very dramatic behavior of the Schindlers.

If the allegations of the Schindlers with regards to Michael Schiavo are untrue, then you have seen a vindictive family that will stop at nothing to get their way. Would you REALLY TRUST treatment of the disabled i.e. Terri Schiavo to someone so RUTHLESSLY emotional?

[Pacifist Patriot]

20. Thank you for sharing your experience.

[Old and In the Way]

24. Well stated, as always, NSMA.

There are (or will be) millions of Terri Schiavo-type cases that will occur....are we ready, as a nation, to divide ourselves into these camps for everyone of them? How many more of these spectacles can this country endure before we dissolve into social civil war? Or is that the purpose of this?

Somehow, we've managed to handle this problem for thousands of years at the point where it righfully belongs....with the family unit. Are we going to set new precedents where parents have more control and rights than husbands/wives? I hope not. I've read enough about this particular case to believe her husband has been absolutely right in his handling of his wife's best interests.

For all those people who believe he is evil, why not let Micheal be accountable in the eyes of his Maker? If he is wrong, he'll be puished, right? Because this whole case is being driven by the extreme Religious Right....why not let God be the final Judge? Who gives us, the uninformed public, the moral right to weigh in and judge these personal decisions of which none us were privvy to?

[PittLib]

27. Thank you ...

I'm being made to feel guilty about my stance on this issue, as if it is anti-disability ... hell, even my mother equated Terri's case with "pulling the plug" on my quadrapelgic brother. I almost went through the roof. My reason for supporting Michael is due to me being more afraid of not having right to my own body than I am of being disabled. Ironically, two weeks ago my mother all but gave me power of attorney after my stepdad "hemmed and hawed" over whether to remove his father from life support. After this conversation, I have to find someone else to carry out my wishes. I would defend my stepbrother to the end, as I would my stepdad's mother (Alzheimer's) ... but it is not the point, not to me anyway.

[Misunderestimator]

28. Well said.

Fortunately, my mother passed away in her sleep, but she also had DNR papers drawn up. She had had MS for 15 years before she drew up those papers, and I know for a fact that she would NEVER want to go on existing in a brain-dead, vegetative state. I also believe that my father and she may have had a spoken agreement for euthanasia if it came to that.

This case is scary as hell in its possible effect on all of our rights to leave this earth under those conditions.

[Sugarbleus]

33. It's very late (Sun. Morn). I don't know how I missed this thread...

Great debate here. I'm equally, and pleasantly, surprised that common dreams hosted that article.......it was fantastic!

And just for the record:While I am on the side of TS's family, and while I agree with Banazir's dedication to disabled rights (as I am), I don't have a problem with persons making their end of life/medical treatment wishes known via legal documentation.

My worry is with the medical establishment/health insurance companies "pushing" futile care language on unsuspecting families and patients.

I'm also concerned about undocumented hearsay from "guardians" as to what the "patient wanted"(when they cannot speak for themselves)........again, make out your wills early and review them often as you age.

The thing that blew me completely away this last week and a half was the language used by my fellow dems regarding seriously disabled persons and the seemingly disregard to the entire disability rights issues...hasn't been very pleasant, frankly it's been frigtening.

Ultimately, it's each to his own...but make that CLEAR so ya don't fall into temorary asphasia, or something, and watch helplessly as the doc comes at you with a nice overdose of Morphine!

I apologize to many posters in DU for yelling at them. It's been a tremedously stressful period. I've been concerned, frustrated and AFRAID.

Best to all,

[Sugarbleus]

34. PS: To add

http://www.raggededgemagazine.com/life/passionplayshrode.html

The Passion Play...........

[Banazir]

35. The two senses I think about this in.

There's a sense in which I don't have a problem with it provided there's legal documentation.

There's also a sense in which I've seen so much abuse of that kind of legal documentation that I know how even that isn't a guarantee that it's the person's wishes, nor is it a choice made in a vacuum. There's also the fact that people can and sometimes do change their minds only to be overruled by their appointed guardians, and that the nature of 'heroic measures' can be taken to mean things the signer never meant it to mean. And the fact that decisions and particularly ways of describing said decisions don't always only affect the person making them, but can sometimes affect large numbers of other people in similar medical situations.

So the point I'd been trying to make above (not sure how well I did so) is that reality, however neat and tidy it may be to package everything into pre-defined legal categories and however much we'd like to say "This is just me speaking as an individual, this choice will only affect me, and nothing in the way of untoward prejudice has influenced this choice", is messy and doesn't work that way. Every person who says it's better to die than have a certain condition does affect what happens to those with that condition, including in extreme cases whether others with that condition live or die. The fact that some of my disabilities have been viewed as a fate worse than death has directly affected sentencing of people who premeditatedly murder us, for instance. However much it'd be convenient to say that people who say they'd rather be dead than like me are only affecting themselves, I've already seen what that attitude does to judges and juries and the public outcries always somehow supporting the killers of children with my labels. They're unfortunately not unconnected.

[nothingshocksmeanymore]

36. I agree on that point

I also agree with Benazir that the process CAN be abused, but unfortunately we are ALL vulnerable to that. Not simply the "already disabled." Most people develope disabilities with the aging process that can just as easily be interpreted as Benazir has stated, but we obviously have to define INTENT somewhere.

I don't know what the answer is, but that answer needs to lie somewhere between save me no MATTER the future consequence and let me go WHEN I say this is a life I don't want to live.

This is why while I favor DNR orders, I've NEVER been comfortable with euthanasia.

[Sugarbleus]

37. Yep, we need to dicuss and ensure these end of life/prolong life practices

are as carefully monitored and directed and solid as possible. As I suggested, be sure you review your "wills" often...things and can change over time.

Banazir, others, and I in here were talking earlier about how dreadful it is to just be sick (and disabled) while in the hospital on a routine medical stay..like a flu or infection. My own hubby was about to be left to die because he is poor, disabled, had too many stays in hospital from the past, and had an addiction problem some 23 years ago. His condition worsened while he was hospitalized, mysteriously, and they were going t let him die UNTIL I gave a little speech to the nurses in ICU.

All of a sudden his care was stepped up and he recovered. He had been thrown into some sort of coma, went into renal failure, was hooked up to 15 tubes/IV's, had to be intubated, and was finally put on a dialysis machine. He only went in for a bad case of pneumonia/brochitis infection. He is asthmatic and goes to hospital at least once a year for respiratory inflammations. He was doing fine after emergency room treatment; called me to tell me what room he was in..then BOOM over night he was sent to ICU in a COMA.

I hold his Medical Power of Attorney. I told them to spare no expense that I wanted him to pull through. At one point it didn't look good and none of us could figure out what all the ugly stares from the docs were about...they made it sound like there was NO HOPE. I said he didn't want to be keep alive in a coma on life support but.. They said it didn't matter what my paperwork said because he probably wouldn't make it. They were very matter of fact and unfeeling.

MY friend and I were puzzled by their attitude/stares/silence. I asked one nurse what the problem was..she said they thought he had overdosed on "something". "SOMETHING"???? I said what in hell could that be? He was so sick, another day at home would have choked him to death. What in hell could he have done to overdose himself when he could hardly breath or hold his head up???!! He was IN THEIR HOSPITAL fercrissakes!

At one point, a regular respiratory nurse that has been treating him over the years there, said to me: "Why are you still with him?" SAY WHAT???! She said that right in front of me, his mother and his sister. You CAN'T say crap like that in front of family and the patient.......what if the patient HEARS that.!! She was all apologetic and hurried off.

I explained to the nurses at the station what a value he was to my family AND to this community in all of his years of charitable work for the disabled etc etc.. I told them not to judge a book by it's cover OR it's history. He is a very good man. That's when the care started to increase/pickup and he pulled through. The doctors weren't even going to bother before that!!

As it turned out, some intern or whomever dosed him with something he was not suppose to have, something he was allergic to when I wasn't there. Perhaps that is why the nurses were so sheepish when it finally came to light...they weren't talking to us after that. We tried for a malpractice suit but no lawyers wanted to take on the medical establishment...plus, we are poor. We fired his primary care MD because the dufus wouldn't even talk to ME or to hubby/S.O. We were obviously a "pain in his ass"; just poor white trash I guess. Talk about your "God complex"!

Needless to say, hubby is FREAKED out with hospitals these days. We've beefed up our Wills and MPOA's since that.

I have several stories...I've gone on too long here. Just be very careful about what you do or don't want. If you are not well insured, if you are older and poorer or disabled, your chances are 50-50 in coming out of hospital alive and well. Doctors with money concerns and God Complexes would much rather be doing a heart bypass on Bill Clinton than keep we pea pickers and "useless eaters" alive. Dig.

[nothingshocksmeanymore]

38. As far as malpractice goes on the legal end

often we believe it is there but have great difficulty finding doctors who will testify..depending on the specialty one is suing there may be smaller community of physicians in that specialty than you think and they are threatened with blacklisting within their community if they testify....then you have the expense of such a case because all these experts want to be paid up front.

This is why I laugh when the medical profession talks about frivolous cases...if a lawyer even TAKES a malpractice case...it's because they've at least preliminarily assessed that it occurred.