NDSC Joint Statement
Editor’s note: This article was written before
Terri Schiavo’s
death
by Kathy
In October 2003, the National Down Syndrome Congress (NDSC) joined
25 other national disability groups in a statement regarding the
Terri Schiavo case. The statement is listed below, or can be found
at www.raggededgemagazine.com.
Also of interest is an op-ed piece written by Steve Eidelman, the
Executive Director of The Arc of the United States at www.msnbc.msn.com/id/7287283/#050325a.
Issues
Surrounding Terri Schindler-Schiavo Are Disability Rights Issues,
Say National Disability Organizations Oct. 27, 2003 — We,
the undersigned, come together in support of Terri Schindler-Schiavo
and her human and civil rights. We are the national spokespersons
for the rights of millions of Americans with disabilities whose voices
are often not heard over the din of political and religious rhetoric.
We come together for those who will be touched by disability in their
lifetime and who will need our help to make their voices heard. We
call on the media to join with us in ensuring that the real story
about Terri Schindler-Schiavo, and thousands like her, is told.
We ask the general public, who are clearly confused about what is
best for Ms. Schindler-Schiavo and others like her, to read this
joint statement, signed by national organizations and our allies,
and then to act accordingly to signal their support for Terri Schindler-Schiavo.
She deserves nothing less than the full advantage of human and civil
rights the rest of us are fortunate to enjoy as Americans. We will
not rest until her most basic humanity is secure.
The “right to life” movement has embraced her as a cause
to prove “sanctity of life.” The “right to die” movement
believes she is too disabled to live and therefore better off dead.
Yet the life-and-death issues surrounding Terri Schindler-Schiavo
are first and foremost disability rights issues—issues which
affect millions of Americans with disabilities, old and young.
Can she think? hear?
communicate? These questions apply to thousands of people with
disabilities who, like Ms. Schindler-Schiavo, cannot currently
articulate their views and so must rely on others as substitute
decision makers. The law requires that a guardian’s decision
be based on written documentation or other clear and convincing evidence
of the patient’s wishes.
Her husband and guardian, Michael Schiavo, says she would not have
wanted to live in her current condition, but there is no written
documentation or compelling evidence of this. There is just his word.
Early on in Michael
Schiavo’s quest to remove his wife’s
source of nourishment, an independent guardian was appointed upon
request by Schiavo’s own attorney, George Felos. That guardian,
attorney Richard Pearse, issued a report to the judge stating that
Michael Schiavo was not a credible witness to his wife’s end-of-life
wishes because he waited several years before coming forward with
the claim that she wanted to die. Pearse also noted that Michael
Schiavo would benefit financially from her death. Pearse was quickly
removed at the request of Felos. Experts on the issue of guardianship
point out that it is always desirable that a person in Terri Schindler-Schiavo’s
position have an independent representative who has no particular
interest in the case other than her. Since the dismissal of Pearse
in 1999, Terri Schindler-Schiavo has never been appointed another
independent guardian. The law Governor Bush signed now calls for
one.
The peculiar series
of events which have led up to the current debate seem to have
avoided both the judge’s scrutiny and media coverage.
Michael Schiavo says his wife would not have wanted to live in her
current condition. And under Florida law a spouse has the right to
decide, though his powers are limited by the U. S. Constitution.
Michael Schiavo conveniently
remembered Terri’s alleged wishes
only after the malpractice judgment was awarded. A review of court
records shows that, of the $700,000 from a malpractice settlement
Michael won that was to go for her care, over half has been spent
on his legal fight to disconnect her feeding tube. Over $200,000
of it has been paid to his attorney George Felos. Michael Schiavo
has refused to let his wife receive therapy from a speech pathologist,
a common type of rehabilitation available to people with brain injury.
A prominent expert filed an affidavit that Terri Schindler-Schiavo
can swallow her own saliva, and could potentially be weaned from
the feeding tube and recover some speech, so that she could indicate
her own wishes.
A recent report in the
New York Times Sunday Magazine stated that after months or years
with little sign of consciousness, people may still be capable
of complex mental activity. The reporter, Carl Zimmer, wrote, “To the medical world, …hundreds of thousands
of...Americans who suffer from impaired consciousness present a mystery.” Whether
Terri Schindler-Schiavo is—or isn’t—capable of “high
level thought” is not the real issue here. It is clear that
she is conscious and responsive beyond mere reflexes, as has been
demonstrated by her ability to track with her eyes, respond to verbal
commands by physicians who examined her on video, and react to those
she loves.
She has a severe brain injury, yet has not undergone the rehabilitation
that is typically given to people with this type of disability. People
with severe cognitive disabilities are devalued as lives not worth
living. In truth, the lives of all of us with severe disabilities
are often considered expendable. This is why we are speaking out.
Americans who have disabilities—cognitive disabilities like
Ms. Schindler-Schiavo— have rights. Congress decided that in
1990 when it passed the Americans with Disabilities Act. Yet most
of society does not consider Terri Schin-dler-Schiavo as having any
rights other than the right to die. We believe she has a right to
therapy and support; we believe the Americans with Disabilities Act
requires that.
Consider David Jayne,
a 42-year-old man with ALS. Every five seconds, a ventilator on
a cart next to his bed pumps air into his lungs. He is not able
to move. Twelve years ago, Jayne would have dismissed this existence
as a living hell. “Yes, I am very passionate
about the Terri Schindler-Schiavo issue, because I live it,” says
Jayne, who was profiled in TIME Magazine in 2001. Jayne, like many
of us, would have once said he could not imagine living in his current
state. “If someone had told me I would be paralyzed and tethered
to a ventilator, yet still find meaning in life, I would not have
believed them.” Today he says, “It is incredibly wrong
for society to decide who lives or dies based on their opinions of
what level of quality of life is worth living.”
In this matter of living
as a disabled person, those of us who live with disability, are
the experts—not husbands, not parents,
not doctors. We know that life with a disability is worth living,
and we know that what makes life awful for us is the attitude of “better
off dead” that drives much of the thinking surrounding people
like Terri Schindler-Schiavo.
The fear of disability
and the resulting bigotry adhered to by most non-disabled Americans
is often cited by people with disabilities as one of the most difficult
barriers to overcome. In a recent column, Bill Press stated, “I wouldn’t want to live like that,
would you?” We respond: “like what?” Terri Schindler-Schiavo
is characterized as “...a brain-damaged woman who has been
kept alive artificially.” Meant to signal horror, the concept
has no real meaning to us who live by “artificial” means.
Is a person on dialysis being kept alive artificially? Is a person
taking insulin being kept alive artificially? Is a person who undergoes
open-heart surgery, or cancer treatment, or intensive care in a hospital
being kept alive artificially?
It is a well-known fact
among those of us who live with disabilities that a feeding tube
is a low-tech support, and people who use them can and do live
full and meaningful lives. It was invented in the nineteenth century
and relies on nothing more than gravity to make it work. Terri
Schindler-Schiavo is said to be in a “persistent
vegetative state.”
But is she? In court,
the medical experts were divided. Florida Circuit Judge George
Greer says she has not demonstrated sufficient actions to prove “cognitive function” because her actions
were not “consistent” or “reproducible.” But
Florida law defines “PVS” as a condition in which there
is no evidence of responsiveness. By ignoring Florida law, Judge
Greer has violated her due process rights, as many of us asserted
in our friend-of-the court briefs.
Historically, many people with disabilities such as autism, Down
syndrome and cerebral palsy have been thought to be incapable of
communication.
Increasingly, yesterday’s assumptions about inability are
being thrown out when confronted with the reality of people exceeding
the low expectations put on them by others. In 1990, the Supreme
Court held, in the Cruzan case, that the experts’ subjective
determinations of things like “persistent vegetative state” invite
the very “quality of life” judgments that the Court found
as inappropriate. Terri Schindler-Schiavo’s fate is entwined
with all disabled people who rely on surrogates. If the legal standard
in cases involving termination of life support is reduced to the
point where Ms. Schindler-Schiavo’s “quality of life”—as
determined by others—justifies her death by starvation, then
what protections exist for the thousands of us who cannot speak due
to disabilities?
Discrimination against
people with severe disabilities is part of our nation’s history. Eugenicists advocated for the involuntary
euthanasia of 60,000 “hopeless cases” of persons with
disabilities in institutions in the last century, and urged the killing
of “defective” children. Thousands in our nation were
sterilized against their will because they were “defective.” Infants
born with disabilities have been denied lifesaving medical treatment.
And people who become severely disabled, like Terri Schindler-Schiavo,
are said to be better off dead. The need for constitutional limits
on the powers of surrogate decision makers is nowhere more clear
than on a question as fundamental as life or death, because the consequences
of abuse or misjudgment are both ultimate and irreversible. Treating
people differently based on health or disability status violates
the rights of people with disabilities under the ADA. Absent proof
that it is truly the person’s decision, withholding medical
care based on the belief that he or she would rationally want to
die because of a disability is discriminatory.
Due to bias against
disability and ignorance about the support systems and successful
coping strategies that preserve autonomy, meaning and pleasure
in life, some physicians have decided that some deaths are more
rational than others and that incompetent ill and disabled people
do not deserve the same type of health care that “competent” people
would receive. When health care providers deny people with severe
cognitive disabilities the health care they need to live, we believe
they are violating the Americans with Disabilities Act.
The belief that people
with disabilities like Schindler-Schiavo’s
are “better off dead” is longstanding but wrong. It imperils
us all. As spokes-people for millions of Americans with disabilities
and their families, we stand with Terri Schindler-Schiavo to protect
her civil and human rights as a living American. She requires the
equal protection of the law.
SIGNED:
ADA Watch http://www.adawatch.org; ADAPT http://www.adapt.org;
AIMMM - Advancing Independence http://www.aimmm.org/;
Center for Self Determination http://www.self-determination.com/;
Center on Human Policy http://soeweb.syr.edu/thechp/;
Citizens United Resisting Euthanasia (CURE); Disability Rights
Center Disability Rights Education & Defense
Fund http://www.dredf.org; Disability
Rights Project of the Public Interest Law Center of Philadelphia;
Hospice Patients Alliance
http://www.hospicepatients.org/;
National Catholic Partnership on Disability http://www.ncpd.org;
National Coalition for Disability Rights http://www.adawatch.org;
National Coalition on Self-Determination
http://oaksgroup.org/nconsd/;
National Council on Independent Living
http://www.ncil.org; National
Disabled Students Union http://www.disabledstudents.org/;
National Down Syndrome Congress http://www.ndsccenter.org/;
National Organization on Disability http://www.nod.org;
National Spinal Cord Injury Association http://www.spinalcord.org;
Not Dead Yet
http://www. notdeadyet.org;
Self Advocates Becoming Empowered (SABE)
http://www.sabeusa.org; TASH http://www.tash.
org; World Association
of Persons with disAbilities http://www.wapd.org;
and World Institute on Disability http://www.wid.org
