DISABILITY MATTERS:
Against the killing of the light
CBC News Viewpoint | March 22, 2005 | More from Disability Matters
This column will feature three writers, each with a different disability. They all have something to say about living with a disability and how they view awareness and attitudes toward disabilities in Canada. The column will deal with the rights of people with disabilities, eliminating inequality and discrimination, and issues of self-help and consumer advocacy. Our plan is to rotate among our columnists to have a new column each month.
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Ed Smith is a retired educator and full-time writer. His humour column runs in several papers and magazines and he has had eight books published. He has been quadriplegic since 1998. Ed lives in Springdale, Nfld.
I find myself sleeping with the enemy these days. That includes U.S. President George W. Bush, Florida Governor Jeb Bush, all the little bushes (Republicans) who scurry around after them, the ultra-conservative Christian Right in the United States, and Lord knows who else.
The bed is getting rather crowded and for me grossly uncomfortable, but here we all are. As that other meaning for the euphemistic "sleeping with" implies, very little actual sleeping is going on.
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"Enemy" means that normally I take issue, and sometimes even great umbrage, with the agendas of the conservative, far right crowd. Now we seem to have a common cause.
As the court documents so coldly put it, this concerns "the matter relating to one Theresa Maria Schiavo." Terri Schiavo is the 41-year-old Florida woman who was brain-damaged 15 years ago and has just had the feeding tube that keeps her alive disconnected.
As I write, her parents' last hope to keep her alive has been dashed by a judge who, after hearing their suit on Monday, March 21, refused to order the tube reconnected. Terri Schiavo has now been without the necessities of life for five days. Shortly she will starve to death.
A brief synopsis of the case may be in order. According to her doctors, Terri has been in a "persistent vegetative state" since the cardiac arrest that destroyed much of her brain. Her husband, Michael, is her legal guardian and as such several years ago gave permission for his wife's nutrition and hydration tube to be removed.
Opposing Michael Schiavo are Terri's parents, who have been desperately fighting to keep their daughter alive.
Given the politicization of the Terri Schiavo case it's easy to lose sight of the real issue, which is that a determination has been made that a brain-damaged person does not deserve to go on living. A judgment has been made on the quality of this person's life, and since that quality does not meet the standards of those involved, it has been decided she should cease to be.
My concern is: (1) that she's being euthanized because she's disabled; and (2) by extension, the fact that there has been created the infamous slippery slope on which tens of thousands of incapacitated and disabled human beings will now find themselves.
I see two basic procedural and human problems here.
The first has to do with who, if anyone, should be responsible for making the decision as to whether she lives or dies. Legally the husband is generally regarded as the closest next of kin. The water here is somewhat muddied, however, because Michael Schiavo has had another love interest for some years.
I don't hold that against him, but it strikes me as incredibly strange that her husband, who has moved on with his life to the point of embracing another woman, still has the legal right to starve Terri to death.
This raises the question of who should therefore be Terri's legal and moral guardian. The parents? The Schindlers' love for their daughter is what's kept her alive for years. Other parents in similar circumstances have fought to have life-support systems removed.
The medical team? It states that Terri has no cognitive awareness and no hope of ever regaining any. The Schindlers, on the other hand, have found 33 doctors and therapists, 15 of whom are neurosurgeons, who state a contradictory view.
The courts? The courts deal in matters of law and not necessarily the rightness or wrongness of an issue. God preserve us from judgments rooted in the vagaries of law when the question is one of ethics and morality.
The second problem has to do with the withholding of food and water. Food and drink are not artificial life support. They are the basic necessities of life for every form of life on this planet. It is incomprehensible to me that any civilized culture would sentence a human being to slow death by starvation, but that's what they're doing to Terri Schiavo.
I live with quadriplegia and have been told I'd be better off dead. Predictably I couldn't agree less. My life has value for me and I'm told to several others.
Ah, you say, but you're different, Smith. You can function quite well on several levels and you make a contribution to your community through your writing and so on. OK, so who draws the line between Terri Schiavo and Ed Smith, and where will the line be?
When is a life so worthless it can be judged to have no right to exist? Who determines that someone like Terri should die and I should live? And the most fundamental question of all: should anyone other than the person concerned have the right to decide life and death for someone who is not kept alive through artificial means?
Emerging from the complexities and confusions engendered by those questions, I believe one thing with all my heart and soul. No one – not the courts, not the medical community, not even the family – has the right to bring life to an end before its time, especially when that determination is based upon the perceived quality of life of the person concerned.
The combined authority of the president of the United States, the governor of Florida and the U.S. Congress are seemingly not enough to prevent Terri Schiavo's death. But perhaps we're looking to the wrong authority.
Only a society believing strongly in the sanctity of human life, whatever its perceived worth, will be enough to prevent such tragedies from happening again and again, and more and more often.
"Society must function on a presumption of life," President Bush said a day or so ago, "and we must always err on the side of life." It's about the only thing he's ever said that I agree with.
Terri Schiavo's life is tragic. The manner of her death even more so because it creates a legal and moral context in which other, similar decisions can be made in the future.
It is humankind that will reap the whirlwind.
LETTERS:
Mr. Smith's contention that the real issue is "that a determination has been made that a brain- damaged person does not deserve to go on living" is way off the mark. The closest thing to the real issue is that an incapacitated person's legal guardian has the right to make decisions on the person's behalf. The real precedent is that a set of existing laws must take precedence over a politically motivated circus of concern.
To answer Mr. Smith's question of "who determines that someone like Terri should die and I should live?", clearly the primary decision in this case should be that of Mr. Smith. In the absence of that decision it should be his legal guardian. It should not be a national poll of physicians, it should not be a suddenly concerned media. The last decision maker should be a group of politicians with personal agendas of their own.
For Mr. Smith to see validity in George Bush's claim that "we must always err on the side of life" ignores the record of the author of these words, a record that includes a choice to err on the side of death over and over again as a governor of Texas.
The manner of Terri Schiavo's death is tragic because it has made a heart wrenching personal decision into a world wide political football game. The legal context is a confirmation that law need triumph.
Frank Zimnicki | South Windsor CT.
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