WE WANT TO LIVE
by Nadina LaSpina
On January 8, the United States Supreme Court will hear arguments regarding the legalization of "physician assisted suicide." Led by Not Dead Yet, a new grass roots group, the disability community has mobilized nationally to oppose legalization. Disabled in Action activists will be joining thousands of others in front of the Supreme Court in a mass demonstration that will get the message out loud and clear: "people with disabilities want to live!"
"But assisted suicide is for people who are terminally ill, not for us," some DIA members have said to me. For the courts, for many doctors and for society at large there is no difference between people with terminal illnesses and people with disabilities. Judge Reinhardt, U.S.Court of Appeals of the Ninth Circuit, ruling in favor of assisted suicide in one of the cases being reviewed by the Supreme Court, defined "terminal" as any "medical condition that is incurable and irreversible." Over three quarters of the people Jack Kavorkian has "assisted" were not terminally ill, indeed many had Multiple Sclerosis. Public opinion holds that people with disabilities are "suffering", that the way we live is "undignified" and "burdensome". Who among us hasn't heard, even from our own friends; "If what happened to you were to happen to me, I'd kill myself"?
"But no one can force us to commit suicide," DIA members rebut. If physician assisted suicide is legalized, it will become "a treatment option". What do you think that will do for the newly disabled person? Will he give himself a chance to find out that life with a disability is worth living or will he opt for the court-sanctioned, medically-recommended way out? And what about those of us who may get "depressed" for whatever reason? -hey, life ain't always a bowl of cherries! Who can deny that it's tiring having to fight negative attitudes and discrimination everyday, that it's disheartening trying to make do without the proper supportive services? Really, how many of us have said at times "I can't take it anymore, I want to kill myself?" If assisted suicide is legalized, we better make sure no doctor ever hears us saying those words.
Time after time, decisions by our courts have proved how dangerous it is for people with disabilities to succumb to depression. When Elizabeth Bouvia, a young woman with cerebral palsy, wanted to starve herself to death, the court concluded that her decision was reasonable. Elizabeth had just had a miscarriage, her husband had left her, she had been forced to drop out of graduate school... A non-disabled person in those circumstances would have been given suicide prevention treatment, Elizabeth was given the OK to kill herself.
Kenneth Bergstedt's, David Rivlin's, Larry McAfee's suicidal wishes were also judged by the courts as reasonable. All three men were quadriplegic. At the time they petitioned the courts, David Rivlin and Larry MacAfee were in nursing homes, Kenneth Bergstedt was afraid he would soon be forced into one. They didn't need the right to die. They needed the right, and the supportive services, to live in the community.
The belief that illness and disability are valid and rational reasons for suicide reflects society's fear and revulsion regarding disability. Why should we be the only beneficiaries of the right to assisted suicide? Isn't the politician publicly accused of corruption, or the investor losing it all in the stock market crash "suffering"? Shouldn't they be given the same lethal right? In the "Brief Amici Curiae of Not Dead Yet and ADAPT", attorneys Diane Coleman and Steve Gold claim that: "The creation of a right to assisted suicide for a class of individuals based on health status or disability is a lethal form of discrimination which violates the ADA."
But once assisted suicide is legalized, people with illnesses and disabilities might not retain their exclusive status and may be joined by others down the "slippery slope" to endangerment. Dr.Herbert Hendin, author of Seduced by Death: Doctors, Patients and the Dutch Cure, says that in the Netherlands, the only country today where assisted suicide is legal, "It began with assisted suicide for the terminally ill, then it moved to the chronically ill, and then the Dutch courts decided that mental suffering is just as painful as physical suffering...a woman was killed by her doctor because she was grieving the death of her son..." Nor are doctors waiting for their patients to ask to be euthanized. The Remmlick Report (1990), an official study by the Dutch government, found that in 25,000 cases doctors had killed people who did not ask to die.
In Germany, too, it began with assisted suicide. Once the door was opened, a quarter of a million people with disabilities were killed by those they trusted most, their doctors, as Hugh Gallagher has shown in his very powerful book, By Trust Betrayed. We all know what followed. Ultimately, the ideas, people, and apparatus developed to run this assisted-suicide program served as the basis for the mass killings of homosexuals, communists, and 6 million Jews.
The citizens of the United States are at a disadvantage compared to the citizens of the Netherlands and of Hitler's Germany. In the Netherlands, and in Germany, when assisted suicide was legalized, they had universal health care. In this country we do not. It is the greatest irony that physician assisted suicide is being referred to as "a right", when health care is not considered a right. It is most frightening to talk about assisted suicide now, when 40 million people have no health insurance, when we live under the threat of healthcare rationing, when with the advent of managed care, cost control, not saving lives, has become the top priority, when doctors make more money for not delivering care than they do for treating us, when costly procedures are simply not being considered, when people are actively being encouraged to sign living wills and "do not resuscitate" orders and to authorize removal of family members from life support . . .
People who are worried that modern medical treatments are prolonging human life beyond natural limits, are obviously not aware of how the tide has turned. Or maybe they are so economically privileged that they are not touched by the health care crisis. In fact, only the very privileged have to worry about overtreatment today. The rest of us have to worry about undertreatment or no treatment at all.
We don't know how many ill and disabled people have already died because of recent changes in health care practices. "Quadriplegics and other significantly disabled people," says Diane Coleman, "are dying in increasing numbers because emergency room physicians judge their quality of life low and, therefore, withhold aggressive treatment". People with even mild disabilities are denied life saving organ transplants. Disabled babies are denied routine treatment and nourishment. Upon entering a hospital, even for a minor procedure, people with disabilities are pressured, even harassed, into signing a DNR, as Joe Heaman of Mouth Magazine reports. What will happen if assisted suicide is legalized? Will we hear, the next time we visit our doctor's office: "I'm going to help you kill yourself because you're a burden on the insurance company and on society?"
In the context of ancient prejudice and deep-seated fear of disability, and in the absence of adequate health care and appropriate supportive services, legalization of assisted suicide would undoubtedly mean "death" for a great many of us. There's no time to lose. We must fight for our lives. We urge people to write letters to the Supreme Court Justices immediately, and to join us in Washington on Jan.8. We need to shout loud enough so the world will hear: "We want to live!"
The Disabled in Action Activist, January 1997
Reprinted Able Magazine, January 1997