But suddenly the victims of our struggle have been thrown into the limelight —-
not the leaders of our civil rights marches, not our Martin Luther Kings, not
our crusaders in Washington, not the countless unsung heroes who struggle each
day against poverty and human isolation —- but the victims of Jack Kevorkian
who gave up in their struggle and found a serial killer/public folk hero who
built a popular crusade from the destruction of their lives. Perhaps for the
first time, our movement is not on the margins, but at the center of a major
Not Dead Yet is a national disability rights group which opposes the
legalization of assisted suicide and euthanasia, because we believe that any
alleged benefit to a few is far outweighed by the deadly danger to this nation’s
largest minority group, people with disabilities. To date, eight other national
disability organizations have formally adopted positions opposing legalization
of assisted suicide: the National Council on Independent Living, the National
Council on Disability, ADAPT, Justice for All, TASH, the National Spinal Cord
Injury Association, the World Association of Persons With Disabilities and the
World Institute on Disability.
The issue is not ordinary suicide, which is not illegal in
any state. Nor is the issue the right to refuse unwanted medical treatments and
accept a natural death, That legal right is firmly established, and has been
widely extended to surrogate decision makers.
The issue is whether there will be an exception from society’s
long-standing laws and policies about how suicidal people are treated, an
exception which would specifically deny the equal protection of such laws only
to ill and disabled people — and whether such an exception will also be
extended to surrogate decision makers (a position already advocated by some in
the pro-euthanasia movement).
Assisted suicide first gained the significant attention of
the disability movement in the early 1980s because of a 26-year-old woman with
cerebral palsy named Elizabeth Bouvia. At the age of 10, she’d been put in an
institution. But she had gotten out, used a motorized wheelchair, and she went
to college. She got married and was going to have a baby. But then she had a
miscarriage. In a short time, her marriage broke up. Her brother died in a
drowning accident. Her mother got cancer.
So she went to a hospital and said she wanted help to die.
The hospital said "no," but a lawyer named Richard Scott took her
case. He was a co-founder of the national Hemlock Society, the nation’s
leading pro-euthanasia lobby group. And they found a psychologist named Faye
Girsh, now the Director of the Hemlock Society, to say that Ms. Bouvia’s
desire to die was rational and permanent, that her desire was based on her
suffering from her disability rather than any of her recent traumas. Disabled
activists in Los Angeles protested that Ms. Bouvia was being treated differently
than a nondisabled woman facing similar setbacks would be treated. Society would
not help her commit suicide if she were nondisabled. It was discrimination,
clear and simple.
But no one listened to the disability community. The media,
the general public and ultimately the appellate court found that she should have
a so-called "right to die" by starving herself while receiving
morphine and comfort care. The California Appeals Court compared Ms. Bouvia to a
terminally ill person, and said: Petitioner would have to be fed, cleaned,
turned, bedded, toileted by others for 15 to 20 years! Although, alert, bright,
sensitive, perhaps even brave and feisty, she must lie immobile, unable to exist
except through physical acts of others. Her mind and spirit may be free ... but
she herself ‘is imprisoned and must lie physically helpless, subject to ...
humiliation and dehumanizing aspects created by her helplessness... We cannot
conceive it to be the policy of this State to inflict such an ordeal upon
But the court case took a couple years and, by then, she did
not use her newly won right, and is still alive.
But a lot has happened since then.
The Hemlock Society and similar organizations have
increasingly gained public acceptance. In the late ‘80s and early ‘90s, it
worked to expand the right to refuse heroic medical treatment to include food
and water, to expand decisions by competent persons to refuse life support to
include decisions by family members and other surrogates, and to expand
surrogate decision making beyond those who are in comas to people who are not in
comas but are severely impaired. These practices are completely private and
abuses are not addressed. There have been more deaths of people with nonterminal
disabilities, some public, such as Christine Busalacchi in Missouri, and
countless others we will never hear about.
Of course, research proves that most families make their
decisions based on the physician’s recommendations. Several research studies
also show that physicians consistently and dramatically underestimate the
quality of life of people with severe disabilities compared to our own
assessments. For example, one study reported that 86 percent of quadriplegics
rated their quality of life as average or better than average. In contrast, only
17 percent of their emergency room doctors, nurses and technicians thought that
their own quality of life would be average or better if they became
Nowadays, some managed care companies offer bonuses to
physicians who save them money on expensive patients by not providing medical
treatments they may need. Meanwhile, the American Medical Association and many
individual hospitals are developing futility guidelines, which allow doctors to
withhold medical treatment against the expressed wishes of a patient or the
family decision-maker. One such guideline, proposed by a multistate hospital
system, would determine futility, not simply based on whether the treatment
would positively affect the condition it’s meant to treat, but also based on
quality of life as judged by the physician. With today’s managed care trends
and government health care budget cuts, what can we realistically expect to
happen when most physicians’ subjective biases and financial self-interests
both discourage a high quality of care?
For the majority of people with disabilities, whose only
information about living with a disability comes from health care providers,
today’s trends do not bode well. This article has focused so far on cases
involving discrimination in the withholding and withdrawal of medical treatment.
Consider the added possibilities for deadly discrimination if our society
legalizes assisted suicide and active euthanasia as currently proposed by the
Hemlock Society and its affiliates.
There is great reason for concern about newly injured people.
8,000 new people are spinal cord injured each year, and 99,000 are hospitalized
with moderate to severe head injuries. In critical periods after injury, people
could easily be swayed to make a so-called "choice" for death. Many of
our colleagues with disabilities who now enjoy their lives say that they would
not have survived the first stages of their injuries if assisted suicide and
euthanasia were legal.
A Civil Rights Analysis
Some euthanasia advocates have argued, "Although we have
laws governing how society will normally respond to prevent suicide, we can
carve out an exception to those laws for certain people and have safeguards.
After all, these people may need help to do it."
Sometimes analogies are helpful. According to the Detroit
Free Press, four out of five completed suicides are by men, but women try to
commit suicide three times as often as men. Obviously, women must "need
help to do it." But would society consider legalizing assisted suicide for
women? This could be done with the usual so-called "safeguards,"
requiring that the woman make the request for assistance two times in a 14-day
period, is not diagnosed as mentally ill, and is not being coerced in any way
evident to two disinterested witnesses who have no financial stake in her
demise. Would society pass a law to make sure that women can exercise their
"choice" for suicide as effectively as men? Clearly, such a law would
constitute illegal gender discrimination.
In New Hampshire, the Hemlock Society lobbied for an assisted
suicide bill, which applies to people with both terminal and non-terminal but
incurable conditions that shorten their overall life span. This would make most
people with disabilities and chronic health conditions "eligible" for
assisted suicide. Not Dead Yet contends that the New Hampshire bill, if enacted,
would clearly violate the Americans with Disabilities Act. Though somewhat less
obviously, so does the Oregon law. The ADA has been specifically found to cover
persons with cancer and HIV and, presumably by analogy, other terminal
conditions as well. Therefore, the Oregon law violates the ADA.
Unfortunately, the civil rights violation inherent in
legalizing assisted suicide based on health status is not as obvious to most
people as it would be if assisted suicide were legalized based on gender or
At the Heart of a Class Struggle Over Health Care Access
It is no doubt true that many, even most, proponents of
legalized, assisted suicide are well-intentioned people who really believe that
the primary effect of the law would be to stop unremitting pain and suffering
based on a truly voluntary request from a person who is really near death.
However, a study of the first year under the Oregon law, which included
information supplied by physicians who decided to voluntarily report their
assisted suicide activities, demonstrated that none of the patients who died fit
the profile. Pain was not the issue. Most expressed fear of future disability
and dependency as their illnesses progressed. "Death with dignity"
really means "death before disability."
The median income of Hemlock Society’s members is $52,000.
They can be described as the Four W’s —- the white, well-off, worried well.
"Choice" is nice rhetoric to borrow, but it’s not that simple. What
are the safeguards that ensure a voluntary suicide without coercion? First, the
individual must give consent after having been informed of the
"feasible" medical alternatives. This alleged "safeguard"
does not address two key issues: (1) None of the assisted suicide bills or
referenda require that the costs of the medical alternatives be covered,
actually making assisted suicide nothing more than the much touted "last
resort," and (2) Non-medical alternatives that might address the individual’s
concerns are not part of the informed consent.
Give Me Liberty or Give Me Death
Throughout the’80s, there were several court cases
involving people with nonterminal disabilities who were also granted this
so-called "right to die." Most of them were ventilator users who
wanted to be freed from confinement in a nursing home, but didn’t know how to
achieve that goal in the oppressive system they faced. Instead of personal
assistance and freedom, most of them got death. David Rivlin in Michigan and
Kenneth Bergstedt in Nevada are examples of lives already lost over this issue.
Olmstead won the right under the ADA Title II requiring that
governmental services (including long-term care services) must be provided in
the "most integrated setting" appropriate to the needs of the
This is our Brown v. Board of Education, the disability
community’s ultimate desegregation case.
A new pro-euthanasia book has a different answer for people
who would rather die than go to a nursing home. In Freedom To Die, Derek Humphry
(Hemlock Society’s well-known co-founder and author of Final Exit) and
Mary Clement write:
Surveys have consistently found that most people would
rather continue to live at home rather than in a nursing home. What has not been
known until recently, however, is that the aversion to "such a facility is
so strong that a new study of seriously ill people in hospitals found that 30
percent of those surveyed said they would rather die than live permanently in a
" (The Age, Dec. I 0, 1996.) This information begs
the question: "Why do we, as a nation, not allow these people to die, if
they have no alternative to a nursing-home existence and this is what they want?
Their lives would conclude with dignity and self-respect, and one measure cost
containment would be in place. (Freedom To Die, Chapter: The Unspoken
Argument, p. 319, emphasis added).
No "Safeguards" Through the Courts
There is already significant evidence that neither the civil
nor criminal justice systems will draw the line and protect our lives,
regardless of what any legal fine print may say.
Suppose a woman with a progressive but nonterminal disability
such as multiple sclerosis felt like a burden on her husband and family, because
they couldn’t afford her medications, which Medicare doesn’t pay for, or
couldn’t get enough in-home support services. Even though her needs could be
met and her family could be supported, they often are not, and rarely without a
fight. Too many tired sighs from her husband, too many looks away, a negative
comment overheard. What makes her suicide more voluntary than that of a
nondisabled woman facing spousal rejection?
Approximately 15 percent of Jack Kevorkian’s victims had
nonterminal multiple sclerosis, most of them women. By his own admission, Jack
Kevorkian has presided in the deaths of 130 individuals, and a Wayne State
University study reveals that a 70 percent majority of these were not terminally
ill: Sherry Miller, Janet Atkins, Wallace Spolar, Loretta Peabody, too many to
After nine years of serial killing, Kevorkian has been
convicted of second-degree murder. But why did people with disabilities have to
wait so long for the equal protection of laws that others could take for
granted? If he had assisted in the suicides of any other defined group, such as
death row prisoners (as he has proposed), or people who were the victims of
documented abuse, or homeless people, society would not have accepted the
argument that he was relieving suffering. Death is a solution to anyone’s
suffering, healthy or otherwise. But why has death been viewed as the only
viable solution for us? The "better dead than disabled" mentality of
the pro-euthanasia denied people with disabilities the equal protection of the
Kevorkian is not the only example of a perpetrator not
brought to justice. Consider the killing of Henry Taylor, a 69-year-old African
American at a Chicago area HMO hospital in autumn 1998. The day before he died,
the newspaper reported, Taylor told his brother that he was expecting surgery
the next day. The only document he signed was a standard "do not
resuscitate order," not a consent to euthanasia. The physician admits he
killed Taylor by lethal injection, and his license was suspended, but no
criminal charges have been brought six months after the killing.
Since the Oregon law immunizes all participants, to what
extent might it be interpreted by the public as permission to hasten the deaths
of family members without the involvement of health care providers? According to
the FBI, 55.9 percent of all homicides of children ages 0-11 are committed by
family members, and 21.2 percent of homicides of individuals age 50 and over are
committed by family members. Overall, approximately one in seven of all
homicides are perpetrated by family members of the victim. [Snyder, Howard N.,
and Finnegan, Terrence A. (I997) Easy Access to the FBI’s Supplementary
Homicide Reports: 1980 - 1995].
In 1997, a graduating Harvard law student, Amy Hasbrouck,
wrote a paper on the criminal sentencing of family members who killed disabled
children, based on cases reported in Lexis. According to Ms. Hasbrouck’s
study, out of 98 such reported cases, 35 contained sentencing information. Of
these, 15 convicted killers of disabled children received no jail or prison
time, and eight received some jail time ranging from only three months to five
years. Contrast the infamous case of Susan Smith!
We can also begin to see claims of assisted suicide and
"mercy killing" being raised as defenses in murder cases. George
Delury, who later admitted to using a plastic bag to kill his disabled wife,
served four months in jail for an alleged assisted suicide. In 1997, significant
evidence that Delury’s wife did not want to die was presented on Dateline
NBC. In 1997 in New York, John Bement was sentenced to two weeks in jail and
400 hours community service for killing his disabled wife, claiming that it was
an assisted suicide. Advocates argued that Robert Latimer should serve only one
year for killing his 12-year-old daughter with cerebral palsy, somewhat short of
the constitutional minimum 10-year prison sentence for a conviction on second
degree murder charges in Canada. The Canadian appellate court, however,
overturned the lower court’s ruling to exempt Latimer from the longer
sentence. On June 19th, the Fort Lauderdale Sun-Sentinel reported
on a young woman charged with killing her disabled boyfriend: When the physical
evidence did not support her initial story that he killed himself, she changed
her story to assisted suicide. And we still have not heard whether charges will
be brought against the so-called "Angel of Death" in a. Los Angeles
nursing home murder case involving over 40 victims.
Given this track record, people with disabilities should have
no confidence that either the civil or criminal justice systems will value our
lives enough to protect us equally in a society that is more and more open in
its certainty that everyone would be better off without us.
Involuntary Euthanasia and the
Recently the Hemlock Society has begun to advocate
legalization of involuntary
euthanasia. On December 3, 1997, Hemlock issued a
widely ignored press release in which its executive director, Faye Girsh, asked
that family members and other "agents" be able to procure court orders
to euthanize "a demented parent, a suffering severely disable (sic) spouse,
or a child" if their life, "in the belief of the patient or his agent,
is too burdensome to continue." That’s involuntary euthanasia. It’s not
a slippery slope; it’s a political agenda.
Will costly people soon be seen as greedy if they want to
live? In 1997, a leading bioethics journal, The Hastings Center Report,
published a cover article entitled "Is There a Duty to Die?" The
article began with favorable comments on former Colorado Governor Richard Lamm’s
claim that the elderly have a duty to die if they cannot take care of
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