Article in the Harvard Crimson:

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FOCUS: Bigotry and the Murder of Terri Schiavo

By JOE FORD

“Misery can only be removed from the world by painless extermination
of
the miserable.â€? —a Nazi writer quoted by Robert J. Lifton in The
Nazi
Doctors: Medical Killing and the Psychology of Genocide  

The case of Terri Schiavo has been framed by the media as the battle
between the “right to dieâ€? and pro-life groups, with the latter
often
referred to as “right-wing Christians.â€? Little attention has been
paid
to the more than twenty major disability rights organizations firmly
supporting Schiavo’s right to nutrition and hydration. Terri
Schindler-Schiavo, a severely disabled woman, is being starved and
dehydrated to death in the name of supposed “dignity.â€? Polls show
that
most Americans believe that her death is a private matter and that her
removal from a feeding tube—a low-tech, simple and inexpensive
device
used to feed many sick and disabled people—is a reasonable solution
to
the conflict between her husband and her parents over her right to
life.

The reason for this public support of removal from ordinary
sustenance, I
believe, is not that most people understand or care about Terri
Schiavo.
Like many others with disabilities, I believe that the American
public, to
one degree or another, holds that disabled people are better off dead.
To
put it in a simpler way, many Americans are bigots. A close
examination of
the facts of the Schiavo case reveals not a case of difficult
decisions
but a basic test of this country’s decency.

Our country has learned that we cannot judge people on the basis of
minority status, but for some reason we have not erased our prejudice
against disability. One insidious form of this bias is to distinguish
cognitively disabled persons from persons whose disabilities are
“justâ€? physical. Cognitively disabled people are shown a manifest
lack
of respect in daily life, as well. This has gotten so perturbing to me
that when I fly, I try to wear my Harvard t-shirt so I can “passâ€?
as a
person without cognitive disability. (I have severe cerebral palsy,
the
result of being deprived of oxygen at birth. While some people with
cerebral palsy do have cognitive disability, my articulation
difference
and atypical muscle tone are automatically associated with cognitive
disability in the minds of some people.)

The result of this disrespect is the devaluation of lives of people
like
Terri Schiavo. In the Schiavo case and others like it, non-disabled
decision makers assert that the disabled person should die because he
or
she—ordinarily a person who had little or no experience with
disability
before acquiring one—“would not want to live like this.â€? In the
Schiavo case, the family is forced to argue that Terri should be kept
alive because she might “get betterâ€?—that is, might be able to
regain or to communicate her cognitive processes. The mere assertion
that
disability (particularly cognitive disability, sometimes called
“mental
retardation�) is present seems to provide ample proof that death is
desirable.

Essentially, then, we have arrived at the point where we starve people
to
death because he or she cannot communicate their experiences to us.
What
is this but sheer egotism? Regardless of one’s religious beliefs,
this
is obviously an attempt to play God.

Not Dead Yet, an organization of persons with disabilities who oppose
assisted suicide and euthanasia, maintains that the starvation and
dehydration of Terri Schiavo will put the lives of thousands of
severely
disabled children and adults at risk. (The organization takes its name
from the scene in Monty Python and the Holy Grail in which a plague
victim
not dying fast enough is hit over the head and carted away after
repeatedly insisting he is not dead yet.) Not Dead Yet exposes
important
biases in the “right to dieâ€? movement, including the fact that as
early as 1988, Jack Kevorkian advertised his intention of performing
medical experimentation (“hitherto conducted on ratsâ€?) on living
children with spina bifida, at the same time harvesting their organs
for
reuse.

Besides being disabled, Schiavo and I have something important in
common,
that is, someone attempted to terminate my life by removing my
endotracheal tube during resuscitation in my first hour of life. This
was
a quality-of-life decision: I was simply taking too long to breathe on
my
own, and the person who pulled the tube believed I would be severely
disabled if I lived, since lack of oxygen causes cerebral palsy. (I
was
saved by my family doctor inserting another tube as quickly as
possible.)
The point of this is not that I ended up at Harvard and Schiavo did
not,
as some people would undoubtedly conclude. The point is that society
already believes to some degree that it is acceptable to murder
disabled
people.

As Schiavo starves to death, we are entering a world last encountered
in
Nazi Europe. Prior to the genocide of Jews, Gypsies, and Poles, the
Nazis
engaged in the mass murder of disabled children and adults, many of
whom
were taken from their families under the guise of receiving treatment
for
their disabling conditions. The Nazis believed that killing was the
highest form of treatment for disability.

As the opening quote suggests, Nazi doctors believed, or claimed to
believe, they were performing humanitarian acts. Doctors were trained
to
believe that curing society required the elimination of individual
patients. This sick twisting of medical ethics led to a sense of
fulfillment of duty experienced by Nazi doctors, leading them to a
conviction that they were relieving suffering. Not Dead Yet has
uncovered
the same perverse sense of duty in members of the Hemlock Society, now
called End-of-Life Choices. (In 1997, the executive director of the
Hemlock Society suggested that judicial review be used regularly
“when
it is necessary to hasten the death of an individual whether it be a
demented parent, a suffering, severely disabled spouse or a child.�
This
illustrates that the “right to dieâ€? movement favors the imposition
of
death sentences on disabled people by means of the judicial branch.)

For an overview of what “end-of-life choicesâ€? mean for Schiavo, I
refer you to the Exit Protocol prepared for her in 2003 by her health
care
providers (available online at
http://www.cst-phl.com/050113/sixth.html).
In the midst of her starvation, Terri will most likely be treated for
“pain or discomfortâ€? and nausea which may arise as the result of
the
supposedly humane process of bringing about her death. (Remember that
Schiavo is not terminally ill.) She may be given morphine for
respiratory
distress and may experience seizures. This protocol confirms what we
have
learned from famines and death camps: death by starvation is a
horrible
death.

This apparently is what it means to have “rightsâ€? as a disabled
person
in America today.

Joe Ford ’06 is a government concentrator in Currier House.

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Robert A. Fink, M. D.
Neurological Surgery
2500 Milvia Street  Suite 222
Berkeley, CA  94704-2636  USA
510-849-2555

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NOTE:  The material above is not "medical
advice".  Medical advice can only be
given after an in-person contact between
doctor and patient.
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