I’m frankly devastated by Terri Schiavo’s situation.
I’m also horrified that the disability-rights aspect of her situation has not been raised more than it has. There is a profound disabilities-rights issue here that is being alluded to, but not well understood. To me, the disabilities rights issue should be front and center, not to the exclusion of other perspectives, but certainly front and center.
Because that is what Terri Schiavo is: she is a person with a disability.
This should concern us all, because the language that is used to describe Terri Schiavo is dehumanizing. She is described as a “breathing corpse,” a “sad shell,” and so on. Yesterday Lileks linked to a web site that called her a ‘vegetard.’
Even the language of the ‘persistent vegetative state’ is emotionally colored and prejudicial.
Terri Schiavo, regardless of her state of consciousness, is not a vegetable.
A related article that looks useful, which I haven’t read yet, is an interview with the legal scholar Robert George of Princeton, posted at NRO. His opening point is that no decisions concerning life or death can be made on the basis of ‘quality of life.’ (This is not to say that no decisions to end extraordinary care can ever be made, but that such decisions cannot be made based on a judgment that a life is not worthy or valuable.)
In a just society, all lives must be considered to be of equal moral worth.
I agree with this profoundly, and I have seen that we, as a society, do follow this standard. Years ago I visited a school for the multiply disabled in the Valley. I saw one child who actually looked dead to me, and I felt the same horror most people do when they contemplate Terri Schiavo, even though I am myself the mother of disabled children.
These children, some of them, seemed only barely conscious, and only dimly responsive, but they were being cared for, stimulated, provided with therapy, educated to the degree that was possible, and loved. I felt like a jerk standing there, being horrified, while all around me were healthy adults bustling these terribly disabled children through their day!
Healthy people have a horror of disability. I feel this horror myself, and I am the parent of two children with autism. When my first son was diagnosed, my immediate reaction—this is intimate, but I have published one article revealing this—was that I needed to kill him and kill myself.
The thought that ran through my head, over and over again, was: “He has no life, and neither do I.”
I was in a clinical depression. By the next morning I was still in a clinical depression, but at least my mind had cleared on the rationality of two people needing to die because one small boy had been diagnosed with a developmental disability.
My psychiatrist talked me through.
“Why would you assume that your son will have an unhappy life?” she asked me.
I told her that every day a dirty & obviously disabled man trudged in front of my house, carrying a little portable radio & listening to a baseball game, and that seeing him, I now saw my son in 30 years’ time.
She said, “But why would you assume he is unhappy?”
Well, that was a good question. As it turned out, ‘Gus’ lived in the guest house of a mansion a few blocks over; he was apparently cared for by a parishioner in his church. He was, probably, autistic, and he was following his daily route to town and back, running his daily errands. Others in the neighborhood knew him to speak to by name, and he returned their greetings.
I’m guessing he was as grubby as he was because he refused to relinquish his favorite clothes long enough to have them washed!
My psychiatrist told me that there had been a fair amount of research done with disabled & mentally ill people—she had done some of it herself—and they all have the same level of well-being anyone else does. (People with clinical depression, she said, are the one exception. Extremely low ‘quality of life’ is almost the definition of depression.)
Since then I’ve followed this research, and it’s true of suddenly-disabled adults as well. After they adjust to their injuries, which seems to take two years’ time, they are as happy as anyone else. A healthy person will say that he would rather die than live life as a quadriplegic. But in life, people who become quadriplegics are like Christopher Reeve, not like the character in MILLION DOLLAR BABY.
The mistake we make is to experience our horror of disability, which I share, and our concern and care for their condition, which motivates those who wish to see Terri Schiavo’s feeding tube removed, as the emotion felt by the disabled person himself.
But ‘quality of life,’ like beauty, is in the eye of the beholder. The fact that we are horrified by the sight of Christopher Reeve does not mean that Christopher Reeve is horrified by the sight of Christopher Reeve. And it is Christopher Reeve’s opinion that counts.
The same can be said of my own life, as a matter of fact. When people realize I have two children with autism they react with horror. I would, too, in their shoes! But I myself am not horrified. I’m as happy as anyone I know, and happier than some. This strange life I lead, which I wouldn’t recommend to anyone else, is normal to me.
I don’t know what Terri Schiavo wants or feels.
But her cognitive capacity is very diminished, and she seems to spend a great deal of her time unconscious or at most semi-conscious. I imagine that from time to time she ‘comes to’ and finds the people who love her present and smiling, or, I hope, cheerful and kind caregivers in her family’s absence. The new research on minimal states of consciousness implies that such people may experience life as a series of ‘jump cuts,’ like a film by Godard, and that’s the way I imagine Terri Schiavo’s life. I don’t think she is in a ‘locked-in’ state—the one condition where I myself would waiver in my support for life over death—and no one has suggested that she is.
I also feel that Terri Schiavo’s extraordinarily good health 15 years after her injury may tell us that she wants to be here. It is extremely unusual for a person in her condition to be alive 15 years later; the outside limit for survival, I believe, is thought to be somewhere in the neighborhood of 10.
To me, the fact that she is still with us indicates that she has been well-cared for and well-loved, and that she hasn’t given up on herself, either. She is living her life.
Given that we don’t know know her wishes, given that her husband has two significant conflicts of interest, given that her parents believe she is responsive and wants to live, given that it is illegal to starve a dog, President Bush is right.
We must err on the side of life.
Judith here. A few related links:
What disability rights activists have to say.
A reminisence by one of Terri Schiavo's court-appointed guardians. (When the Florida Supreme Court struck down Terri's Law, he was released from guardianship.)
UPDATE: Andrew McCarthy fisks the judge's ruling.
When Congress provided for de novo review, uninhibited by what had already been determined in Florida, it seems clear that this is what they thought they were getting at. They were saying: Before we allow state action to deprive the constitutional right to life, let’s be certain we really are dealing with a PVS case and a woman who actually made an informed choice to refuse sustenance. Judge Whittemore, to the contrary, has decided to interpret Congress’s command as limited to an inquiry about whether Florida’s procedures are likely to produce good results. As for the results actually produced — a finding of PVS and informed choice to die — he doesn’t see the need to kick those tires because, he lamely notes, the Schindlers haven’t explained how they could possibly relevant.Like I said before, Terri's parents have a lousy lawyer. I wonder if they could have gotten a star to take this on pro-bono; maybe they tried - I don't know.
The judge, I believe, is wrong and needlessly stingy in construing what the just-passed law directs him to do. Terri Schiavo has had neither the standard medical tests (including an MRI and PET scan) nor the extensive clinical observation that should be mandatory for any finding of PVS on which an effective death sentence is to be predicated. If the proof supporting the PVS finding or the informed-choice finding — which Florida law require to be proved by clear and convincing evidence — is blatantly inadequate, then she has then not received the due process of law necessary to justify a taking of life under the Fifth and Fourteenth Amendments. If she is not a PVS case and she is being tortured by starvation and dehydration, the Florida ruling removing the feeding tube is subjecting her to cruel and unusual punishment under the Eighth Amendment.
That’s what we need a de novo review of: Why weren’t standard tests done, why shouldn’t they be done before a final PVS conclusion is made, and, in their absence, why should we be confident in the accuracy of the PVS diagnosis? There may be good answers to all these questions, but that is what evidentiary hearings are for.
That’s why the medical-expert submissions made by the Schindlers are relevant, even if Judge Whittemore is correct that, in the dizzying pace of the last few days, the Schindlers’ lawyers failed to connect the dots in their papers — a failing many, many courts would have understandably forgiven in these dire, hurried circumstances, where life is at stake.
UPDATE: Ace fisks everything left to fisk.
1 Comments:
I don't think it's wise to sentimentalize profound disability or to underestimate its consequences on families.
I worked in a residential school for multiply handicapped children in the 70s, kids who had been born deaf, blind, autistic and retarded because of the Rubella epidemic. The kids were, for the most part, easy for people doing shift work to like, although there was real high staff turnover because the work was emotionally draining.
It was a lot harder on the parents and families, and virtually all of them ended up divorced or shifting care to grandparents. If these people had had the option of abortion and had taken it, their lives would have been much better than they were, and so would the lives of their other children.
If you have a disabled child you make the best of the situation, but nobody in his right mind would choose to have one over a fully functional child.
But Terri Schiavo isn't a disabled child, she's an adult who once experienced life as we all do, but no longer can. That's her essential tragedy, and the comparison to children doesn't do it justice.
There seems to be some debate over whether she's PVS or minimally conscious, but that's largely academic because there is no prospect for any improvement in her condition. She's going to be confined to a hospital bed unable to communicate and largely unaware of her surroundings (if not completely unaware) for the rest of her days.
Sadly, her parents have tricked themselves into multiple delusions about her that seem to become more profound the more intense the court battles become. To me, they seem like people hooked on some kind of drug.
I don't see anything about this whole family tragedy that argues for dragging it out.
Post a Comment
Links to this post:
Create a Link
<< Home