Electric EDGE
Web Edition of The Ragged Edge
January/February 1997
Electric Edge

Pain is not the main reason we want to die ...

Those ol' Kevorkian blues:


T he two assisted suicide cases before the U.S. Supreme Court this January promise to yield a decision as historic as Roe v. Wade, and no less explosive. The issue of doctor-assisted suicide, say disability activists, is like a freight train barreling down on a society that has little clue as to its implications. Many disabled people are starting to fear that the U.S. is becoming a society that is coming to embrace the idea of euthanasia for disabled people as a good idea -- not unlike the climate of early Nazi Germany. Are these activists over-reacting?

The American Civil Liberties Union calls the "'right to die" the "most intimate decision a person can make" -- a decision, it says, in which the state has no right to interfere. A 1990 Court had recognized in the Cruzan case a constitutional right for "mentally competent but terminally ill" people to "refuse lifesaving treatment." Now proponents of the right to die argue that "terminally ill" people having a doctor's "help" to kill themselves is no different and should also be legalized.

Parading in front of this backdrop is Dr. Suicide-On-Call, the indefatigable Dr. Jack Kevorkian.

The disability rights movement has long agonized privately over the issue of suicide. Now activists are trying to mobilize. "We had better be prepared for the worst," says Lucy Gwin, editor of Mouth, of the possible decision that could come down from the Supreme Court.

Organizers are upset particularly because no one outside the disability community seems to take the fear of disability activists seriously. "It can happen here," says Gwin, referring to pre-war Germany.

Some activists in the movement have long insisted that each of us should retain the right to be able to end our life; that this constitutes control over one's fate. When one cannot physically administer the fatal draught, they argue, one should have a right to assistance. This is the argument made also by the right-to-die movement.

But there are huge differences -- the main one being fear of disability. Most who support the right to die seem to have an almost panicky horror of living disabled. Disability rights activists don't think being dependent on others for intimate tasks like toileting is either humiliating or undignified . "Experienced people with disabilities have learned that there's more to life than toileting independently," longtime disability rights activist Diane Coleman told members of a U. S. House of Representatives subcommittee last April. "This is an insult to our lifestyles." Coleman insisted to the committee that "assisted suicide proponents have reinforced public prejudice and fear regarding disability, labeling it 'pitiful,' 'Helpless,' 'hopeless,' 'miserable' and 'inherently undignified.'"

Assisted suicide proponents have reinforced public prejudice and fear

regarding disability ... A s assisted suicide moves to the front burner in our national consciousness, talk shows, magazines and newspapers feature doctors, ethicists, attorneys, right-to-die advocates ... The one group whose voice is missing is the group the issue most affects: the disability rights movement. Yet it doesn't seem to occur to reporters or editors that there might be a viewpoint on this issue from something called a "disability rights movement."

The disability rights movement has, over the years, developed a wealth of wisdom about these issues of independence and dependence, of dignity and personal assistance. Yet all this wisdom remains hidden within the movement. The information the movement has is virtually never heard as part of the national debate. Arguments before the Supreme Court will likely not contain any of this wealth of understanding. Without information, most in society act from beliefs about life as a disabled person, rather than stopping to listen to disability advocates themselves.

For example: the right to die is nearly always framed as a good for "the terminally ill." In right-to-die circles, severely disabled people are all said to be "terminally ill" -- even if their disabilities are non life- threatening (see story page 13).

Disability advocates garner no headlines when they insist that Kevorkian's cases involve not terminally ill but merely disabled people. Margaret Garish wasn't dying. She had rheumatoid arthritis. In pain, legs amputated, she was certainly disabled. But not terminally ill. Esther Cohen wasn't dying. She had multiple sclerosis. Many of the women who sought out Kevorkian had M.S. Very few of those who have sought Kevorkian have been close to death. Judith Curran, with chronic fatigue syndrome for 20 years, was indisputably disabled and in pain; she was not close to death -- except, perhaps, from an abusive husband arrested in July for assault and battery. Yet the belief remains unshaken that those who seek assisted suicide are "terminally ill." -- and "suffering horribly."

Nor does society know the disability rights movement's work on dignified personal assistance (see stories, page 6). Instead of pressing for assistance in living, we find a movement calling for assistance in dying. For Myrna Loeb of Manhattan (who also had M.S.) this was at least part of the issue she faced, an issue that was lost in the "right to die" hubbub. Loeb died at the hand not of Kevorkian but husband George DeLury, who frankly admitted he was tired of caring for her: "You're sucking the life out of me like a vampire, " he wrote in his diary. Right-to-die advocates note that DeLury did exactly what most exhausted relatives lack the courage to do. In media accounts, DeLury was billed. "a compassionate hero." An El Paso man, also with M.S., who died at Kevorkian's hand in October told a reporter that he sought death rather than end up in "one of those rat-infested nursing homes to be warehoused by `Nurse Ratched,'" referring to the cold-hearted nurse in "One Flew Over the Cuckoo's Nest." Neither incident prompted national soul- searching about the need for a system of dignified attendant services in this nation.

The disability rights movement has not yet been able to refocus the debate. It's hardly been able to nudge it.

The idea of a "right-to-die" carries a certain cachet among progressives who, if the issue were the right to die for blacks or gays, would be as passionately against it as they are for this, which they frame as a constitutional right to privacy and liberty along the lines of Roe v. Wade. They imagine themselves hooked to tubes, old, frail, at the end of life. Or they picture themselves like Christopher Reeve pictured himself at first: "I didn't know if I was a human being," he told Time magazine's Roger Rosenblatt.

"Life, to many people, means will, choice, control," wrote Martin L. Kotch of the Michigan Commission on Death and Dying a few years back. "If these, through physical debility, are taken away . . . life is gone."

People fear, rightly, that if they become disabled they'll have no choice in how they live. This is not a right to die issue. It's a disability rights issue. But society doesn't see that. Disability rights is not fashionable. The right to die is.

-- Mary Johnson


Disability groups are mobilizing for a mass protest 10 a.m. Wednesday, Jan. 8 on the foot of the steps of the U.S. Supreme Court in Washington, DC. That's the day the Court hears arguments in the two right-to-die cases. "People with disabilities are the first to be victims of this 'right,'" say organizers Lucy Gwin and Tom Olin. "No one outside our community seems to know that people with disabilities are the target." They hope for 20,000 to show up and report that luminaries like Pete Seeger and Elie Wiesel will be on hand. Not Dead Yet is coordinating the action; to get on a contact list call 716/244-9798. Better yet, just show up on Jan. 8.

"Snow is fairly rare in DC. As always, weather is the easy part; it's friends that are hard to come by," says the disability rights 'zine Mouth. "You'll meet a two- or three-block-long assortment of people who care about the things you do,"

If you can't come, says Mouth, throw a letter-writing party to write letters to the Supreme Court Justices. Tips? Get lots of different kinds of paper and envelopes so the letters don't all look alike; have a computer onhand for people who can't hand-write letters; have stamps ready.

Justices don't respond to organizational type letters, says Mouth. "You have a personal stake in this. Write a personal letter. Handwriting letters is good. Tell them what you fear. Stay on the point: We won't live, our grannies and babies won't live, unless the Supreme Court forbids doctors killing patients."

Mouth says one person from the group should be in charge of mailing all the collected letters "on staggered days, not all at once."

Write to each of the Justices? "Yes, it's a lot of work, but so is getting out of the way of a speeding train." The Supreme Court Justices are: Chief Justice William H. Rehnquist, Justices John Paul Stevens, Sandra Day O'Connor, Antonin Scalia, Anthony Kennedy, David H. Souter, Clarence Thomas, Ruth Bader Ginsburg and Stephen G. Breyer. Address: Supreme Court of the United States, Washington, DC 20543.

(Mouth, 61 Brighton St., Rochester, NY. Subscriptions $16/year.)

Related Stories:

  • Paul Longmore talks about terminal illness and how society misses the real issues.
  • Mary Jane Owen and Not Dead Yet meet a furious parrot.

  • Write to The Ragged Edge

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