Electric EDGE
Web Edition of The Ragged Edge
May/June 1997
Electric Edge


Stories by Mary Johnson

Media hoopla about the Internet never mentions its true genius: giving gimps safe passage as normal. If you can't see the guy drooling with his mouthstick, he seems like your average professor, the typical grad student, a perceptive fellow. His comments are read and judged on their merits. Too few of us have access to the 'Net. No computers, no money for online fees. If you don't come out as disabled, nobody knows.

But if you do ...
Well, read on.

People who fear disability can't understand disabled people comfortable with it. People who really see disability as a fate worse than death are dealing with demons mere talk can't possibly exorcise.

A rash of back-and-forth squabbling between Not Dead Yet supporters and Hemlock Society stalwarts on its online Internet discussion group this past winter brought this truth clearly into focus.

"I have come to the conclusion that the right-to-die movement poses a real and substantial threat to persons with disabilities. The legalization of assisted suicide will eventually lead to the euthanasia of persons with disabilities."

Not Dead Yet chanted outside the Supreme Court; law student Mark Siegel posted his message on the online discussion group run by Hemlock Society founder Derek Humphry.

Siegel told folks upfront that used a wheelchair -- and a ventilator. He was working on a law review article on the topic, he said. "In a culture that already devalues the disabled as citizens and human beings, what effect will the acceptance of death as a solution to medical problems have?" he continued. "We are one of the largest minorities in the country and also the most powerless. This lack of power gives other individuals the power to make decisions for us. If PAS is made legal, this will include the power to kill."

Siegel had been "lurking on the list for a few months" -- meaning he'd been reading the messages, staying quiet and unidentified -- common enough on the Internet. "Not once have I seen mention of the disabled and the implications" of assisted suicide; this struck him as "short-sighted and naive."

"The only evidence you seem to rely on is anecdotes of some poor friend or relative who died a slow and painful death. I sympathize with your loss, but anecdotes do not mandate the sanction of murder.

"You may think I'm paranoid," he continued. "But consider this. How many of you have seen a disabled person on the street and thanked God that you were not one of them? How many of you have told friends that you would rather die than be disabled?"

Siegel threw down the gantlet to author of the controversial how-to suicide book, Final Exit. "Humphrey and his ilk may have good intentions, but their approach is ignorant of the broader issues -- and callous when it comes to disability rights."

It's voluntary, stupid!

Online, responses come within hours. Alan Meisel identified himself as the Director of the Center for Medical Ethics at the University of Pittsburgh School of Law. "Why is it that physician-assisted suicide poses more of a threat than removal of life-sustaining medical equipment?" he asked Siegel. "Cannot doctors now pressure, coerce, cajole, and induce patients to agree to terminate life support? Has a doctor ever tried to do that to you?

Pid & Pas

Like "pro-choice" and "pro-life," we now have PID and PAS. "Physician Assisted Suicide is something we do NOT want. Personal Assistance Services is something we demand now. PAS is, therefore, a very confusing abbreviation. Try not to use it ever again."

After this was posted on Internet disability discussion groups, someone suggested a new acronym: PID, for "physician-induced death." A lot of people liked it and started using it -- online, anyway.

"If not, why do you fear a doctor trying to talk you into taking an overdose of medication? If so, you obviously resisted successfully, so why would you be any less successful in resisting an overture to take an overdose?"

University of New England Law Professor Michael Eburn posted this: "What evidence is there that the dire consequences you predict will follow? The only one people bring up is Nazi Germany, but there the policy was not motivated by respect for autonomy but eugenics, wartime economics and racism. . . . "

Meisel "fails to understand the disability experience," Siegel wrote a few hours later. Yes, Siegel himself could "obviously resist" a doctor hoodwinking him into suicide, as Meisel had written; but "not all disabled individuals are able to communicate their wants and needs."

And many, Siegel went on, "have such negative images of themselves that they welcome death." He mentioned Elizabeth Bouvia and Larry McAfee. "I was raised in a loving family that taught me to respect myself. Others are not so fortunate."

By now others had jumped in. Siegel's contention that legalization would lead to the euthanasia of persons with disabilities was "pure speculation," said one. "We have laws that allow licensed physicians to perform surgery," the critic continued. "Has this been corrupted to allow non-licensed people to do the same? No. . . . Laws are very specific and tightly defined for that very reason."

"Physician-assisted dying" would be "limited only to the terminally ill," several insisted. It was totally voluntary, said others.

Siegel responded to each comment. "Anyone who has studied law knows that our laws are hardly ever specific and usually not tightly defined. Humans aren't perfect and neither are our laws.," he wrote. "If this were true, I'd have to start looking for a new profession." As for "terminal," "medical science is still too inexact to determine when a person will die," he went on. "How broad is the definition? Is a person with HIV 'terminal'? Cystic fibrosis? Muscular dystrophy? Do you see the problem? In a sense we are all terminal -- except maybe for Dick Clark."

"Why deny suffering, terminally ill people the choice of ending their suffering?" a woman with the Florida chapter of the Hemlock society asked. "The fact that YOU are disabled does not give you the right to refuse THEM a choice. As the population continues to age and get sicker a point will be reached where medical care MUST be rationed," she continued. "We are almost there now. Where do you suggest rationing start, if not with those who are already terminally ill and begging to be released?"

"Rationing usually implies being left out," Siegel returned. "Who do you think that will be? You refer to the 'terminally ill,' but I can hear 'disabled' beneath your words. Everyone knows that people like me are expensive, so let's just kill 'em."

Pawns of the Right?

"Those opposed are not
themselves disabled ... "

"What did we see on the front page of papers . . . , who did we see on TV sets around the world, whose chants did we hear on network radio news at the top of the hour nationwide? Members of Not Dead Yet," wrote Hemlock Society Public Relations Director Dori Zook a few days after the Supreme Court protest.

News reports listed the heretofore little-known disability rights group Not Dead Yet along with the very well-known National Right to Life. Inevitably, conclusions were drawn. Sylvia Gerhard, who described herself as a "medical librarian" and "disabled cancer patient," often posted articles from medical journals and the news. "Those with disabilities who are opposed to Physician Assisted Suicide are an extremely vocal group well-organized by politically sophisticated advocates who may be--usually are not--disabled themselves," she wrote.

Another member of the discussion group suggested that "a wing of organizers from the anti-abortion crusades" (whom he later referred to as " long-time right-to-lifers") "has thrown its resources into anti-PAS, and has organized the small, extremely vocal group of persons who are disabled, or claim to speak for the disabled . . . ."

"In Washington D.C. this past week I spoke with the 'founder' of Not Dead Yet, who came from Chicago," wrote Carol Poenisch on January 12. Poenisch, of "Merian's Friends, a Right to Die Referendum in Michigan." said she'd learned that Not Dead Yet "came out of ADAPT, Center[s] for Independent Living, and organizations like that." Poenisch added, "Many of the members who came with her to protest were not mentally competent. For example, one person in a chair kept moaning 'Mama.'"

Carol, I was there in Washington on the same day you were, as part of the Not Dead Yet contingent outside of the Supreme Court," wrote Mayer Shevin of Syracuse the next day. "Your post is a wonderful example of why many of us with observable disabilities fear [that] our rights, even our very lives, are in need of vigilant protection. . . . There are too many people out there who will look at someone with inarticulate, poorly controlled vocalizations, facial grimaces, spasmodic movements, etc. -- even people who "keep moaning 'Mama'" --and jump to conclusions: 1. This person is incompetent. 2. This person's point of view is not worth attending to. 3. This person has a very poor quality of life. 4. This person is not worth heroic (or even routine) medical intervention in case of an emergency. 5. This person, if s/he could be made to understand his/her situation, would probably want to die ..."

He was not accusing Poenish "'on the basis of this one post, of having jumped to all these conclusions," he wrote. But "they are ones that I have heard spoken with some frequency, about people I know and love, by medical professionals in settings in which I have worked. When such attitudes exist, I know that the risks my friends and I spoke of on the streets of Washington are very real ones."

Siegel saw a "pronounced libertarian streak" in his critics that discounted "the very nature of our modern society. Decisions are not made in a vacuum -- and they do have a ripple effect," he insisted.

Would Siegel "endure whatever pain and indignities that might happen near your time of death without any assistance"?

"I am not disabled," added the person posting this message. "But if I were, I would be fighting for such a law since I would be one of those most likely to need such help."

"To you, I would probably look pathetically disabled, yet I feel no pain and manage to live a rather dignified life," Siegel wrote back. Exasperated, he added, "Disability does not necessarily mean suffering! How can I get you to understand this?"

You're protected already!

"I would not be so foolish as to claim that everything is right for [the disabled]," Derek Humprey wrote, responding to Mark's assertion that disabled people were a largest but nearly powerless minority.

"But consider these two 'strengths' . . . 1. There is a National Council on Disabilities[sic] which has US government support and funding (I was a speaker at its recent conference in Phoenix); 2. Several years ago, the disabled and their supporters put through Congress the Americans with Disabilities Act, which gives that community considerable protections and supports, which it deserves."

"Best wishes, Mark," Humphrey finished.

"Laws and organizations do not cause a revolution," Siegel responded. "The paradigm is still the same. I still make less than you. I am still dependent on the government for health care which limits my potential income, I am less likely to marry and have children . . . . I could go on, but you get the idea. Society still fears the disabled and the ADA can do nothing about it. I wish it were otherwise. The ball is in your court."

Get out of my face!

Better not let
anyone hear you.

"My politically incorrect and politically unsophisticated response to those opposed to physician-assisted suicide is, 'Get out of my face!' wrote Sylvia Gerhard, a frequent contributor.

Dori Zook, the Hemlock Society's' 29-year-old Public Relations Director, could "definitely see the logic behind" Gerhard's comment. She understood her frustration.

Voluntary? Or not?

If physical 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 every day, 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 any more, I want to kill myself?" If assisted suicide is legalized, better make sure no one ever hears us saying those words.

A day or so had passed; the regulars seemed tired of Siegel. "I dismis you as a bore! Begone!" wrote a man from the West Coast.

"What bores us," said someone from the South, "is that you are completely unable to understand what voluntary means."

The discussion group had been "created for people who SUPPORT the right-to-die movement," said a Hemlock regular; it was "not intended as a place for endless debate by those who want to argue about things they barely understand."

A week after Mark Siegel had posted his first message, Humphrey logged on to put a stop to things: "I think the matter of disabled persons and physician- assisted suicide has been thoroughly aired on this mailing list, and recommend that it now be closed . . . ."

Obediently, Siegel posted one final message. He knew he hadn't changed many minds, but he wanted to add a final thought. "Individualism has its place. But sometimes we overlook the needs of the community."

It would be weeks, though, before things quieted down.

Siegel didn't understand others' suffering. A man who described himself as "a septugenarian who has suvived two kinds of cancer" wrote, "You want me to suffer like my mother and my sister-in-law? You've got some secret information that they really didn't suffer that much? Come on, tell us cancerous geezers!"

A Siegel supporter was told he was "so tied up in the fact that you have a disability that you seem to separate yourself from us.

"There is very little difference between us," the Hemlock supporter went on. "Why is it that you feel that the life of a disabled person is held to be of any less value than that of a terminally ill person?"

People like Siegel, said yet another, did not trust their "own autonomy and the goodwill of others in society."

Not Dead Yet court brief:
Double standard violates the ADA

"We support people's right to choice. But when suicide is elevated above many other choices, and when it's given legal sanction, dangerous logic is at work," said Diane Coleman in a press release. "We hope the Florida Supreme Court will keep killing out of the hands of doctors."

In March, Not Dead Yet and ADAPT filed a friend-of-the-court brief opposing physician-assisted suicide in a prominent Florida case in which a doctor asked the court's permission to provide a lethal drug to a man with AIDS.

Not Dead Yet wrote that it "oppose[s] the legalization of assisted suicide, because it singles out people with significant health impairments for assistance to die. Legalizing this practice . . . will deny to people with disabilities and chronic health conditions the equal protection of laws and medical practice standards automatically applied to healthy individuals who are suicidal."

In a similar argument to the U.S. Supreme Court, Not Dead Yet had written, "Health status becomes the basis of a double standard in which people with disabilities, a "discrete and insular minority," [according to language in the Americans with Disabilities Act], are discriminatorily denied the protection of suicide prevention laws, medical practice standards, and statutes prohibiting abuse, neglect and homicide that nondisabled persons receive." The group claims that this double standard violates the ADA.

An air of nastiness pervaded the postings of those who continued to discuss what DeathNet website's John Hofsess snidely called the "Not Braindead Yet" issue. The "anti-RTD folks' dialog is so rhetoric-choked that it's hard to find a patch of level ground" wrote a Hemlocker. They continued to "litter the mailing list with pointless diatribes."

"Right-to-die folks" were "unable to accept that we feel insecure in a money and profit-driven society," wrote a Not Dead Yet supporter.

"We are sorry for these people, but inasmuch as they are totally immune to both evidence and logic, debating with them is a complete waste of precious time," countered another Hemlocker.

Faye Girsh, president of Hemlock, said that the Not Dead Yet folks ignored the words "voluntary" 'and "at their request." "We support this right of terminally ill people who make the request," she wrote in a Jan 29 message.

When the issue was "taken to the grass-roots level," Not Dead Yet's message would fail, said a Hemlocker in what was intended as a final put-down. "Try to convince the average American that his or her doctor may turn malevolent should they become disabled."

On Jan 30, a message appeared from Diane Coleman, head of Not Dead Yet. "What I'm mostly asking is that society stop assuming that we're better dead than disabled, try to figure out why an individual wants to die, and then help to solve the real problems the individual faces, instead of helping them die."

A lack of trust may be justified

By Cal Montgomery

People like Mark Siegel did not "trust their own autonomy and the goodwill of others in society": This was a common rejoinder on the Internet. Cal Montgomery posted this response:

I do not trust my own autonomy in the current atmosphere because I am very aware of what it takes to push me to despair and of the likelihood that these things will happen. If I had access to adequate health care, I would undoubtedly not be so worried.

By "adequate health care", I mean two things. First, health insurance, which I do not have but used to have. Second (and I've actually never had this), physicians who either had heard of and knew something about my disability or were willing to read something about it before passing out disability-related medical advice. When you've just had to spell the name of your disorder to a physician and suggest a reference book where it can be looked up, and that physician is now suggesting he call you an ambulance so you can go to the hospital and meet a "very good" surgeon who can undoubtedly "cure" you (when you know perfectly well that a cure is not currently available) rather than prescribe you the antibiotics which even he admits will do something for the infection that brought you in, it does not inspire confidence. . . . .

If I had access to adequate educational opportunities, I would undoubtedly not be so worried. By "adequate educational opportunities" I basically mean a situation where my requests for classroom access are met with an attempt to determine how appropriate they are and then implement some sort of plan for getting me access. Being told, "The Americans with Disabilities Act doesn't apply to you" by my Disability Services Counselor does not meet my definition of "adequate educational opportunities".

If I had access to adequate vocational opportunities, I would undoubtedly not be so worried. Half the agencies I've contacted say I'm too disabled to work, so they won't help me. The other half say I'm not disabled enough to qualify for services, so they won't help me. The job I do have doesn't pay enough to allow me to buy the things I need, nor does it provide health insurance. It does, however, make demands on me that leave me completely exhausted and in nearly unbearable pain by the end of every shift. Being tired, I expect that. Being in pain, that's a constant for me. But there is a level of pain and exhaustion that I would really rather not reach five days a week. In other words, I have a pretty good idea of what it takes to push me to complete despair, and these circumstances occur on a regular basis.

And they don't need to. It is not my disability that is causing this despair; it is a combination of my disability and the environment I live in -- an environment which could be changed.

And while I support having as wide a range of choices for people as are possible without harming other people, I do not think that setting it up so that large numbers of people with disabilities are likely to perceive their only choices as death or the financial ruin of their families, or death or uncontrolled (but not uncontrollable) pain, or death or incarceration in a nursing home or other institution, or death or the exhaustion of loved ones and the increasing straining of relations between them [is really giving them "choices"]. In theory it should never come down to options like these. In practice it does. And as society increasingly sees death as the dignified option in each of these pairs, the balance is tipped. There is pressure to die.

There is already pressure to die. If we legalize PAS in the current situation, it can only increase. . . .

As far as good will, there are two problems. First, I only need to encounter a small number of doctors without good will in order to be dead. . . .

If I cannot communicate effectively with physicians now (and I cannot), I suspect that I would be unable to communicate effectively with them if they were permitted to assist me in suicide."

If I want to commit suicide and try, and fail to die, I can try again. If I want to live but someone else thinks I would be better off dead, and therefore "helps" me to die, I cannot do anything to change the fact that I'm deceased. Nor can anyone else. It's over. It seems, therefore, that if you are going to err, you ought to err on the side of life (which is a fixable error) rather than on the side of death (which is not). . . . .

I'm not afraid of dying and I am aware that I'm going to die one day; I'm also not afraid of physical pain, which always has and probably always will be a near-constant part of my life. I would, however, vastly prefer that my dying be done later rather than sooner -- I'm still in the midst of a very interesting life -- and that my physical pain be kept to levels I can function with . . . . I am afraid of being institutionalized, of being unemployed, and of becoming ill and having no recourse to medical treatment. I am afraid of losing the supports that are in place that allow me to have a decent home life (and to eat regularly, and so on) and of having those supports that allow me, at least to some extent, to participate in my community, removed.

Disabled people often have to face these fears, and all too often the reality that they have come true. If these were not real and present fears threatening so many of us, I too might be embracing the right to have a physician kill me. For now, however, if I decide choose that route I am willing to settle for a messier, more painful way of doing it myself.

Delury's debates

" . . . . I doubt [that] you could observe the agony of the long-term, hopelessly and progressively disabled person and [then] deny that person a right to give up the struggle merely to save your own skin from a hypothetical danger. Congratulations on your courage and determination."

The online note to Mark Siegel ending with the cliche was unsigned. A message's ID tag may or may not make the identity clear; this one bore the tag "Geedel." By the end of January, George E Delury, whose case became a cause celebre in right-to-die circles when he was prosecuted in New York for assisting wife Myrna Lebov's suicide, was signing his full name to his messages.

Not Dead Yet supporters' "demand for 'ironclad' certainty" was based on "a fear of death at best, a religiously-motivated red herring at worst."

"If the energy [fighting the "right to die"] were put into development and advocacy of specific and broad protections of the disabled, I suspect their general lot would see great improvement." What he called their "lack of focus" made Delury "mistrust the real aims, origins, and financing of the Not Dead Yet."


"I find it interesting that the able disabled--that is, those who can get around, manage for themselves more or less, make choices--want to deprive the unable disabled--the bedridden and extremely feeble--of assistance to do what every other living human is free to do. I find it interesting that they are apparently so afraid for their own lives that they are willing to see people much worse off suffer for their sakes. Much of the opposition to PAS is tinged with this readiness to see others suffer as living human sacrifices to anxiety about death.

Another message:

"My wife was not in pain. She refused medication that might have improved her outlook, saying 'It can change how I feel, but not the facts.' She had excellent and loving care from a home health aide and from me in a comfortable home. Also she was not terminal. Nor was she one who would give up easily. She had fought her disease (MS) with everything she and medicine and alternatives could come up with for over 15 years. But in the end, she couldn't see the point in going on and facing worse to come at no benefit to herself and at considerable loss to others. Her decision to leave was made despite a full menu of alternatives. She was just tired of being heroic and brave and decided to do something for herself.

If the energy put into anti-PAS advocacy were put into development and advocacy of specific and broad protections of the disabled, I suspect their general lot would see great improvement ...

-- George Delury in a Jan. 30 online message

Not Dead Yet supporter Carol Cleigh had finally had enough: "What makes you assume that we haven't? The fact is that the disability rights movement is over 50 years old and has had numerous legislative successes. . . .

"Don't think the movement doesn't exist because you aren't aware of it. That is your ableism -- and the fact that you don't have to be aware (as all oppressors don't). ..."

If we didn't spend so much money trying to do the impossible with the terminally ill and the unviable newborn, we would have the resources to enable the disabled not only to live without fear of PAS, but to vastly improve their lives."

-- George Delury in an online message

Someone who elsewhere identified herself as a psychiatrist responded, "The right to refuse medical treatment already exists. Are you suggesting that medical treatment should be withheld whether the patient agrees to it or not? Isn't that a very different issue from PAS which is supposed to be voluntary?"

Delury came back with this: "But the fact is that doctors do decide that now in many cases, and in too many cases the doctors recommends and exerts a subtle pressure to accept treatments that will be of questionable effectiveness at best, and all too often painful and expensive to boot. . . . ""


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