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.
"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
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.
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
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
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
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
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
"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,"
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
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
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
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
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
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
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.
" . . . . 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
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
"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.
"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
-- 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
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. . . .