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Not Dead Yet is the National Disability Rights group that opposes legalization of assisted
suicide and euthanasia. Specifically active euthanasia is opposed and non-voluntary passive
euthanasia which means that last one is killing through the withholding of life sustaining
medical treatment against the will of the person.
There is a history to it, to the formation of Not Dead Yet. It really began long before
there were converging forces. One area is known as the Baby Doe Cases which involved
newborns with spina bifida and Down Syndrome, it was found out that they were being starved
to death or denied routine medical care after they were born. And this resulted in cases
that, court cases that were battled out through the developmental disability community and
produced regulations called the Baby Doe Amendments that were actually amendments to the child
abuse laws. It’s turned out in later years that they were not much enforced. At about
the same time there were other cases happening that actually Ed Robertson and others got
involved in that are leaders in the movement. One of those involved a woman named Elizabeth
Bouvais, she was in the Los Angeles area, she had CP, cerebral palsy. She was age 26
and she had some really serious setbacks in her life: a miscarriage, a marriage break
up, her brother had drowned, her mother had been diagnosed with cancer, vocational rehabilitation
had been messing with her benefits and she checked herself into a hospital to try and
starve herself to death and receive morphine and comfort care and the media, and the press,
and the judges, and most of the community, the medical people even, tended to agree,
to say that Yes, she should want to die because of her disability and we should help her.
It was called a quote right to die case. But the disability community throughout California
fought back and tried to get their point of view in front of the public by protests and
so forth. Testifying actually in one situation and trying to influence what happened. Unfortunately
we lost and shortly after that a number of other cases came up that we called the give
me liberty or give me death cases involving people on ventilators and that’s where some
comments came out from Ed Roberts because he was very similar to the individuals who
were being offered the right to die without being offered the right to get supports. And
in fact I dug out from the Disability Rag archives a quote from Ed if you would be interested
to hear it. He says, and he’s commenting particularly on these respirator cases where
people didn’t want to be in nursing homes so they were using pull the plug as a way
to get their freedom, he said: The whole thing is outrageous, said Roberts now. He had just
learned about the Bergstead case himself. I’m getting angrier and angrier about these
cases they feed on each other, the attorneys, the courts, the judges, they don’t know
anything. They see somebody like Bergstead and say of course he wants to die. What’s
happening is we’re killing people in this country and then act like we’re doing them
a favor. It’s outrageous. Those comments of Ed’s really are a precursor to an increasing
concern that people had over the eighties and nineties about the euthanasia movement.
Really devaluing the lives of people with disabilities and using all kinds of legal
sophistry and stereotypes to justify medical killing of people with disabilities. And people
tried writing articles and filing court briefs and testifying about these issues but yet
people like Jack Kavorkian got more and more popular and so finally it became clear that
there was a need for a group similar to adapt to take the issue to the streets cause all
the nice ways of doing things were not working and that’s what caused the formation of
Not Dead Yet which is named after a running gag in Monty Python and the Holy Grail. It
grew out of the work of so many people who were concerned about these issues but it wasn’t
enough and more was needed so that’s the reason for Not Dead Yet which has now been
in existence since April 96. And while we have been successful at raising the disability
voice on these issues, we have a very, very long way to go to overcome the incredible
money and political power behind the pro-euthanasia force. And I only hope that this movement
will grow and that people will gain an understanding of how much our lives are threatened.