Whom better to ask than the disabled? They give some surprising answers.
When assisted suicide is legalised most of
the people who will die are disabled. And American disability advocates
take a very dim view of it. This is the theme of a hard-hitting series
of articles in the latest issue of the Disability and Health Journal
The editor, Suzanne McDermott, of the University of South Carolina School of Medicine, writes
that she changed her own mind after studying the issue. At first she
believed that assisted suicide was solely a personal autonomy issue.
But eventually she was persuaded that it is at the heart of the
movement for disability rights: "Almost all people at the end of life
can be included in the definition of ‘disability’. Thus, the practice
of assisted suicide results in death for people with disabilities."
The special issue is a response to a controversial 2008 decision by the American Public Health Association
(APHA) to back "aid in dying" (ie, assisted suicide). This slipped
almost completely under the media’s radar, but it means that the official policy
of the "oldest, largest and most diverse organization of public health
professionals in the world" – 30,000 of them – is to support assisted
suicide to the hilt. Or, as they prefer to call it in Oregon,
"patient-directed dying" or "physician aid-in-dying".
Rather than worrying about some ambiguous
language in the Obama administration’s health reform legislation or
scrutinising the publications of his health advisors for a few
indiscreet phrases, the elderly and their relatives ought to be worried
about the 30,000 members of the APHA. They are the ones who could be
sitting on the "death panels". The authors of the articles in the Disability and Health Journal certainly are worried.
Several themes emerge from the articles.
the very existence of legalised assisted suicide leads to an
expectation that the disabled, elderly and infirm should shuffle off
their mortal coil a bit early to relieve the burden on their carers.
This fear has been ridiculed by supporters,
who contend that all they want is choice at the end of life and that a
lifelong experience of disability is different from the pain of seeing
one’s life ebb away. They think that disability advocates are
demonising euthanasia lobby groups and exaggerating their own vulnerability
Nonsense, says Diane Coleman, of the lobby group Not Dead Yet.
She points out – quite eloquently -- that pity can be more dangerous than
a mad doctor in a nursing home. We are, she says, "more frightened by
the doctors who are out to help us but who see our lives as burdensome
and who know little about options that make life with disability
Why should valuable resources be wasted on
them, anyway? "Every week, I hear another person with a disability
recount a disturbing interaction with a physician, nurse, or other
health professional who clearly transmitted the view that life with a
disability is inherently burdensome," she writes. "It does not feel
safe to have one's life in the hands of someone who views that life as
unfortunate, maybe even tragic or unfair."
advocates of assisted suicide and euthanasia ignore the experience of
the disabled because they think that a dying
80-year-old is radically
different from someone who has spent a lifetime in a wheelchair. Show
me the evidence for this, Ms Coleman demands. Anyone, at any age, can
learn to cope with disability. "To dismiss these efforts as futile
because the individual is near the end of life has no empirical
foundation and raises questions about the commitment of assisted
suicide proponents to the genuine self-determination of people with
What these articles convey strongly is that
supporters of assisted suicide simply do not care how much collateral
damage their campaign for "dying with dignity" will do to people who
have lived with their disability for years. Ms Coleman savagely
comments: "Proponents of legalized assisted suicide are willing to
treat lives ended through abuses of the practice as ‘acceptable losses’
when balanced against their wish for a pleasant way out and their
unwillingness to accept disability, or responsibility for their own
the danger is not mandated euthanasia, as in Nazi Germany. Rather, it
is a subtle and widespread expectation that death is better than
disability. "If the legalization of assisted suicide continues, I
believe the rank and file will some day see nothing wrong with
hastening the deaths of many people," writes Dr Carol J. Gill ,
director of the Chicago Center for Disability Research. "They will
stand by and do nothing to stop it and will endorse the policies and
institutions that advance it – not because they are evil people but
because it will no longer be evil in our culture to do so. It will be
compassionate, respectful, routine."
several authors argue forcefully that Oregon's Death with Dignity Act,
which is the model for assisted suicide in the US, is deeply flawed.
After about 15 years, several intractable problems have emerged. The
authors claim that there is very little patient control; that
statistics are incomplete; that oversight is minimal and secretive;
that safeguards are easily circumvented; and that negligent doctors
cannot be prosecuted. Allegations that in Oregon and in the
neighbouring state of Washington, which has also legalised assisted
suicide, the circumstances of deaths are routinely falsified are
especially disturbing. In fact, Washington actually requires that
doctors falsify the death certificate by listing the terminal disease
as the cause of death rather than the lethal dose of barbiturates.
Nearly always the debate over assisted
suicide focuses on disabled people who want to choose death. Why not
ask disabled people who want to choose life? They are the biggest
stakeholders. Like most academic publications, the Disability and Health Journal
normally offers obscure and specialised reading. But this month’s issue
is a must-read for anyone interested in the future of "death with
Michael Cook is editor of MercatorNet.