http://www.raggededgemagazine.com/schiavostatement.html
>Issues Surrounding Terri Schindler-Schiavo Are Disability Rights
>Issues, Say National Disability Organizations
>
>Oct. 27, 2003 -- We,
><http://www.raggededgemagazine.com/#signatures>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
>millionDisability Rights National Spokespersons statement on Terri
>Shindler Schiavos 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. Terri Schindler-Schiavo is alive. 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 her 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 Gov. Jeb Bush has
>just signed calls for one now.
>
>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 that Terri Schindler-Schiavo has 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. Fl.
>Circuit Judge George Greer say 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 were 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 spokespeople 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:
>>
>><http://www.adawatch.org/>ADA Watch
>><http://www.adapt.org/>ADAPT
>><http://www.aimmm.org/>AIMMM - Advancing Independence
>><http://www.self-determination.com/>Center for Self Determination
>><http://soeweb.syr.edu/thechp/>Center on Human Policy
>>Citizens United Resisting Euthanasia (CURE)
>>Disability Rights Center
>><http://www.dredf.org/>Disability Rights Education & Defense Fund
>>Disability Rights Project of the Public Interest Law Center of Philadelphia.
>><http://www.hospicepatients.org/>Hospice Patients Alliance
>><http://www.ncpd.org/>National Catholic Partnership on Disability
>><http://www.adawatch.org/>National Coalition for Disability Rights
>><http://oaksgroup.org/nconsd/>National Coalition on Self-Determination
>><http://www.ncil.org/>National Council on Independent Living
>><http://www.disabledstudents.org/>National Disabled Students Union
>><http://www.ndsccenter.org/>National Down Syndrome Congress
>><http://www.nod.org/>National Organization on Disability
>><http://www.spinalcord.org/>National Spinal Cord Injury Association
>><http://www.notdeadyet.org/>Not Dead Yet
>><http://www.sabeusa.org/>Self Advocates Becoming Empowered (SABE)
>><http://www.tash.org/>TASH
>><http://www.wapd.org/>World Association of Persons with disAbilities
<http://www.wid.org/>World Institute on Disability
--
Marta Russell
Los Angeles, CA
http://www.martarussell.com/