Electric EDGE
Web Edition of
The Ragged Edge
Nov/Dec 1997

Electric Edge

Your Instant Edge
Assisted Suicide or
'Make Them Go Away'?

(Some thoughts and links on a not-so-simple issue)

The following briefs and hotlinks have appeared on the Your Instant Edge feature on the cover page of Electric Edge. Taken as a whole, they offer a good overview of the disability-rights perspective on assisted suicide, and provide access to many of the disability-rights movement's experts on the topic.

Disability Rights Activists Cautiously Celebrate Supreme Court Victory -- Ready to Advocate Against State Measures

Not Dead Yet activists from around the country cautiously celebrated the Supreme Court ruling handed down June 26 which states there is no constitutional right to physician assisted suicide.

Not Dead Yet is a national organization of people with disabilities and our allies who oppose the legalization of physician assisted suicide, because it singles out people with disabilities and health impairments for assistance to die. According to Carol Gill, psychologist and Not Dead Yet activist, most people wrongly assume that the reason people with health impairments want to die is their health itself, but studies show that the real reasons are usually social circumstances that can be alleviated. Legalizing physician assisted suicide, according to Not Dead Yet, will create a double standard, based on health status, for how society responds to a person's expression of a desire to die. The group says that this is very dangerous, particularly in an environment where health care options are limited by managed care policies and budget cuts.

"The good news is that the Supreme Court has upheld state bans of physician assisted suicide in Washington and New York," said Diane Coleman, Not Dead Yet organizer. "The bad news is that other states may well do the opposite -- that is, legalize the practice -- and we'll have to fight this battle state by state."

Not Dead Yet filed a Friend of the Court brief opposing the legalization of physician assisted suicide, and held a rally in front of the Supreme Court on January 8 which drew over 500 disability rights activists. In its brief, Not Dead Yet argues that legalizing physician assisted suicide would violate the Americans with Disabilities Act (ADA) because assisted suicide would only be legal for persons with disabilities and health impairments. "If it is simply an issue of autonomy, why not extend it to anyone who asks?" Coleman said. "Society would never accept that for nondisabled or healthy people -- but it's somehow acceptable for people who are socially devalued."

Steve Gold, an attorney for Not Dead Yet, stated, "Today, a legal blow, but not a lethal blow, was dealt to the discriminatory practice of inducing death for those with disabilities and health conditions. But unfortunately, this issue is not dead yet! We'll have to keep fighting to provide opportunities to live, rather than the right to be killed."

Not Dead Yet news release, June 26, 1997.

Dr. Seymour Perlin, founder of the American Association of Suicidology and a professor at George Washington University School of Medicine, was quoted in the national media in the fall of 1989 as saying that acceptance was growing for what he termed "rational suicide"-- which, he said, meant suicide in which others tacitly agreed that suicide was the best route "before things get worse."

The "neutral stance" on the part of relatives and friends in favor of "rational suicide," Perlin said, was "actually collusion." Perlin believed that the person choosing suicide was really reaching out "for affirmation of a desire to live" but was not getting it.

Reported in the September, 1989 Disability Rag.

Cal Montgomery has an interesting take on all this.

In 1983, Elizabeth Bouvia, a woman with cerebral palsy, sued to obtain assistance to die after several personal setbacks, including a miscarriage and the breakup of her marriage. "The court, the press and the public are so prejudiced against disabled people that they ignored the factors that might make anyone feel suicidal, and only focused on the disability," says Diane Coleman, co-founder of Not Dead Yet and co-author of a friend of the court brief before the US. Supreme Court in the assisted suicide cases to be heard Jan. 8. "Since Bouvia's disability was incurable, they wrongly concluded that her desire to die was permanent."

But it took a long time for the court to grant Bouvia the "right to die"; in the meantime, Bouvia changed her mind.

Nonetheless, says Coleman, "Bouvia case is often cited as a precedent in other cases, to the detriment of other disabled people. The Bouvia case established that society can have a double standard about suicide prevention - one for people with serious health impairments and one for everybody else."

This double standard is addressed in the brief filed by NDY and ADAPT.

Not Dead Yet, the group that will be protesting at the Supreme Court Jan, 8 urging the Justices not to legalize assisted suicide, got its start with a protest at the home of Jack Kevorkian. For more on this group and its ideas, click its link above to go to the NDY Website.

Two national disability rights groups that strongly oppose the legalization of assisted suicide filed an amicus brief with the U.S. Supreme Court. ADAPT (American Disabled for Attendant Programs Today), known for its grassroots activism and civil disobedience tactics, and Not Dead Yet, a new organization which launched its efforts in a protest outside Jack Kevorkian's home last June. Both contend that the legalization of physician-assisted suicide poses an overwhelming threat to the lives of people with disabilities.

"The bigotry against disabled people that can lead to our deaths . . . can be cloaked as concern for our interests -- cloaked so well that even those who are urging our demise see themselves as acting in our interests," says disability rights supporter Cal Montgomery, who uploaded a passionate anti-suicide message recently.

"I have been informed by a doctor recently that disabled people cannot attend schools like normal people, and by another that I would be better off if I committed suicide," says Cal Montgomery. "I have not sought these opinions -- one was announced during an office visit for no reason that I can discern, and the other was mailed to me over the Internet."

This link will take you to Cal's larger version of this discussion.

Web sites operated by Hemlock Society honchos and other proponents of assisted suicide "promote the illusion that there is no opposition to their movement from anyone but religious conservatives" says Not Dead Yet. "They refuse to recognize the disability rights resistance to their bigotry regarding our quality of life. Our community is ignored, while stereotypes and fears about disability are used to further somebody else's agenda."

Right to die websites have gained a reputation as sources for general information on issues related to euthanasia. Major news services cite them., says Not Dead Yet, which is working online to educate right-to-die proponents about disability rights issues.

Not Dead Yet is erroneously dismissed as ""right to life" by the Hemlock Society and other proponents of assisted suicide.

"In the context of this debate this refers to elements of the Christian conservative political movements," countered Not Dead Yet.

"This is not a 'right to life' issue-it is a civil rights issue," said Bob Liston,of Ypsilanti, Mich., who is Michigan coordinator for Not Dead Yet. "It is not people who are terminally ill who are so emphatic about this 'supposed' right [but] people who are afraid of the thought that they may not be in complete control of their lives. Guess what folks!!! None of us are."

"Most people have an image of the 'right to die' movement as advocates for eliminating the last few pain-filled days of someone with a terminal illness," says Steven Drake of Not Dead Yet, the group that will be protesting at the Supreme Court Jan 8 urging the Justices not to legalize assisted suicide.

"In fact, the movement encompasses advocates of this "right" for anyone with a chronic illness or disability. What all players agree on, though, is that it is a practical necessity to get legislation passed for a narrowly defined population in order to try to expand this "right" to more and more people through court challenges.

"Several well-known Right to Die cases involved people with disabilities who despaired when threatened with placement in nursing homes," says Not Dead Yet. "They could have lived independently with home support. They - and 2.4 million other disabled Americans - have been consigned to nursing homes because in-home supports are so limited. We want to live - in freedom."

"Please understand. We don't want anyone to suffer," says Diane Coleman, a national organizer of Not Dead Yet. "We believe that disabled people and sick people deserve to have their health care needs met, including pain management and in-home support services that are often denied.

In two well publicized cases, this did not happen:

Disability activists charge that "stereotypes and fears about disability are used to further the right-to-die agenda." This "extreme prejudice against people with disabilities ... most of the experts won't even acknowledge, much less try to overcome."

An example of what they mean was this:

"You insure against death, but not against the living death of permanent paralysis," wrote syndicated financial columnist Jane Bryant Quinn, expaining disability insurance in the Sept 11, 1989 issue of Newsweek. The quote was reprinted in the November, 1989 issue of The Disability Rag, in its What! column.

Here's more about horror-of-disability writing in the national weeklies.

In a 1989 case that right-to-die advocates see as a successful precedent, David Rivlin died in a Michigan nursing home. But there was another aspect to the David Rivlin story that never made it into the news. Disability Rag reporter Mary Johnson talked with Detroit Free Press reporter Mike Williams shortly after Rivlin's death and got some facts that might have saved Rivlin's life -- had he known about them.

"The failings of our health care system are not a justification for killing," says Not Dead Yet. "This right-to-die epidemic is based on society's extreme prejudice against people with disabilities - a prejudice that most of the experts won't even acknowledge, much less try to overcome." For more on this topic, see . . .

The arguments used to champion Elizabeth Bouvia's right to die in 1983 sounded to disability activists like arguments made months earlier about "Baby Doe." People had been afraid that such babies would grow up to have horrid, miserable existences; now here was Elizabeth Bouvia, providing the nation with a real-life cautionary tale about being born disabled: Bouvia was the horror which the Baby Doe case had prefigured.

Disability rights activists with backgrounds in civil rights and other liberal causes found themselves on the politically incorrect side of the bed when they opposed the ACLU's championing of Elizabeth Bouvia's right-to-die case in 1983. "We are very, very leery of being placed in the same political landscape as National Right to Life," said one.

Elizabeth Bouvia was a woman who saw herself trapped by a personal "flaw" that prevented her from succeeding in ways society demanded of her and simultaneously denied her -- a flaw she could neither rid herself nor accept, said disability leader Mary Jane Owen back in 1983. Where did such frustration go? "When we are afraid to express rage against others, it is common to turn that rage against ourselves," she wrote.

Recently, Mary Jane Owen protested at Jack Kevorkian's appearance at the National Press Club.

When the celebrated 1983 right-to-die case of quadriplegic Elizabeth Bouvia was in the news, Bouvia was quoted as saying that "Everything has to be done for me. At times it's humiliating and disgusting. I choose to no longer do that." These same sentiments seem to prompt the 1996 remark of Hemlock Society's' Janet Good, as discussed further in Give Me Dignity or Give Me Death in the January/February 1997 edition of Electric Edge.

For more on Bouvia's views of her situation, see:

"The court cannot order me to be a murderer. My concern for Elizabeth is that she made a bad decision at a very bad time, that she has us in a corner and we can't do anything -- especially anything to help." Back in 1983, when the right-to-die case of quadriplegic Elizabeth Bouvia went to court, Riverside General's chief of psychiatry Donald Fischer told the court that Bouvia's wish to die would probably diminish with time. To read more of his, and others' testimony in that case, see ...


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