This past Monday, the Syracuse Post Standard published an op-ed I wrote that gives a bit of the history behind the position that so many national disability groups have taken in opposing assisted suicide laws. Our position often surprises people because we are also such strong supporters of self-determination by people with disabilities, but we also oppose discrimination, especially medical discrimination. Here’s part of the discussion:
Those of us with serious disabilities have good reasons to be skeptical about the mantra of choice being used to market assisted suicide in our profit-driven health care system. Anyone could ask for assisted suicide, but the law gives doctors the authority to decide who is eligible.
Doctors used to exercise near-total control over the lives of people like me with significant disabilities, discouraging parents from raising such children at home, sentencing us to institutions, and imposing their own ideas about what medical procedures would improve our lives.
Disability groups started paying attention to the problem of doctors making life and death determinations in the 1980s in high-profile court cases involving the right to refuse treatment. One involved Elizabeth Bouvia, a 26-year-old woman with cerebral palsy who had a miscarriage and marriage breakup and wanted a hospital to make her comfortable while she starved herself to death. Other cases involved men on ventilators stuck in nursing facilities like Larry McAfee, who wanted the right to live in apartments or real homes, or else “pull the plug.” The doctors, courts, media and public all viewed these severely disabled individuals as the equivalent of terminally ill. They did not get suicide prevention equal to that offered nondisabled people, nor the right to live in real homes instead of facilities, but courts uniformly granted them a “right to die.”
Then the 1990s brought Dr. Jack Kevorkian, conducting assisted suicides using lethal drugs, with two thirds of his body count being people who were not terminally ill. As before, the difference between being disabled and dying was not recognized or considered relevant. As before, the difficulties disabled individuals faced in living – community access, getting a job, getting married – were not considered, or worse, accepted as rationales for ending their lives.
To read the whole op-ed, go here. We were told that the piece would also appear in the print edition sometime this past week. And there are a number of comments, including two from me and two from Stephen Drake in response to others.
Illness: an ending or a BEGINNING ?
All along the way in our lives physicians tell us that illness (disability, old age, …) is an unbearable terrorizing force. Your article and the comments of other NDY activists tell a different truth!
This is all the more important as all over you can read almost every day stories that want to persuade us otherwise. Such as the story about the “end-of-life-decision” of a psychologist when faced with illness (forgetfulness in old age), recently published in the so-called quality press, the New York Times. Here what one of the readers wrote in her post:
Illness: an ending or a BEGINNING ?
All over, one can read such stories almost every day: a happy, fulfilled and worthy life, but then a disease, destroying everything, the END – or what the article’s dramaturgy wants to make us believe. The names of the respective persons become interchangeable, it is always the same story.
I ask myself this: Where do such articles take us – emotionally, as society and politically?
And I say: They take us in the completely wrong direction!
Such articles strongly promote the end-of-life-decision instead of strengthening the solidarity between patients, a solidarity fundamentally needed in every moment – see, for example, the young Chilean Valentina Maureira, changing her decision, because other people bolstered her up to go on.
Illness is not the end but the beginning of something new. Everybody knows that from experience and even the article can’t withhold it (e.g. the new kind of relationship to the grand child). This BEGINNING is what it is all about, illness as a force to turn evreything upside down, giving us the opportunity to change our lives to the better. This new approach is called Iatroclasm. For a start, you can find an introduction on the website of the PF/SPK(H): http://www.spkpfh.de The secret of illness is human species. How to apply the concept of illness.
So far as to the post.
In solidarity
Hans Drager
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