Editor’s note: This article was written before Terri Schiavo’s death
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.
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