Members of the national disability rights group, Not Dead Yet, will rally Oct. 5 in Washington as the U.S. Supreme Court hears oral argument in two major disability rights cases this term.
The high court will hear argument in an assisted suicide case, Gonzales v. Oregon, and in a case regarding the burden of proof in education, Schaffer v. Weast.
Not Dead Yet is based in Forest Park, IL. It organizes and leads other disability organizations in opposing legalization of assisted suicide, euthanasia and other forms of medical killing. More details on the Washington rally can be found at their website, www.notdeadyet.org
The group joined with other disability rights groups from across the nation in opposing the court rulings in the Terri Schiavo case, filing amicus curiae briefs and testifying before hearings regarding heath care issues.
Diane Coleman, president of Not Dead Yet testified before the subcommittee on Criminal Justice, Drug Policy and Human Resources of the Committee on Government Reform of the U.S. House of Representatives earlier this year and said that the prevalent prejudice that no one would want to live like Terri Schiavo transferred into her guardian’s unfettered right to treat her at best as a prisoner suggests that the Schiavo case may be the “tip of a very large and almost fully submerged iceberg.
The far right wants to kill people with disabilities “slowly and painfully by cutting the things we need to live such as health care, public housing and transportation”, Coleman told the subcommittee of the federal House during an oversight hearing on federal health programs, while “the far left wants to kill us quickly and call it compassion, while also saving money for others perhaps deemed more worthy”.
Terri Schiavo, 41,severely incapacitated and brain damaged, died March 31 at a Pinellas Park, Florida hospice 13 days after her estranged husband and guardian, Michael Schiavo, was ordered by the court to remove her assisted feeding. Her husband had petitioned the court for permission to kill her because he said she had no hope for recovery and she would not want to be kept alive by assisted feeding. She had left no living will.
Her parents, Mary and Robert Schindler Sr., contested their son-in-law’s efforts to kill their daughter, saying that she was not in a persistent vegetative state as the judge had determined and removing her nutrition and hydration would be against her religious beliefs and upbringing.
Coleman, who has a juris doctorate and masters in business administration from the University of California at Los Angeles, is the executive director of the Progress Center for Independent Living in Forest Park, Ill. a non-profit nonresidential service and advocacy center operated by and for people with disabilities. She is a member of the California bar, currently on inactive status. During the past 20 years, she has been employed first as an attorney for the State of California, then as co-director of an assistive technology center in Nashville, Tenn.
In commenting on the results of the Schiavo autopsy, NDY said the findings left the central issues in her life and death unanswered. For example, contrary to articles stating the autopsy report “supported” the diagnosis of “persistent vegetative state (PVS),” a neuropathology expert was careful to say that PVS is a clinical diagnosis rather than a pathological one.
“The real elephant in the living room, of course, is whether or not we can really know how conscious anyone labeled “PVS” really is”, Colesman said. Several studies have revealed high misdiagnosis rates, with conscious people being mistakenly regarded as totally and irrevocably unaware.
The autopsy also documented significant brain atrophy, and the medical panel called the damage “irreversible.”
This is not the same as saying she had no cognitive ability.
“It’s always seemed to us that PVS isn’t really a diagnosis; it’s a value judgment masquerading as a diagnosis,” said Stephen Drake, research analyst for Not Dead Yet. “When it comes to the hard science, no qualified pathologist went on the record saying she couldn’t think or couldn’t experience her own death through dehydration.” Coleman agreed. “The core issues remain the same. Protection of the life and dignity of people under guardianship, and a high standard of proof in removing food and water from a person who can not express their own wishes. These are issues of great concern to the disability community – evidenced by the 26 national disability groups that spoke out in favor of saving Terri Schiavo’s life over the past few years.”
In the Gonzalez v. Oregon case, the Oregon “Death With Dignity Act” has been challenged by the U.S. Department of Justice under the Controlled Substances Act, asserting that federal law prohibits physicians from prescribing controlled substances for assisted suicide, on the grounds that it is not a “legitimate medical purpose” for their usage. The District and Circuit Courts have upheld the Oregon law, and the U.S. Supreme Court has agreed to hear the case. The legal issues pertain to the respective roles of federal and state government. Oral argument is scheduled for Oct. 5.
Not Dead Yet has filed an amicus curiae brief in the case along with other disability rights groups including, ADAPT, Center on Disability Studies, Law and Human Policy at Syracuse University, Center for Self-Determination, Hospice Patients Alliance, Mouth Magazine/Freedom Clearinghouse, National Council on Independent Living, National Spinal Cord Injury Association, Self-Advocates Becoming Empowered, TASH and the World Institute on Disability.
In the brief, disability rights attorney Max Lapertosa wrote:
Amici support the Attorney General’s interpretive ruling that assisted suicide is not a “legitimate medical practice” under the Controlled Substances Act, 21 U.S.C. ßß 801-971. . . . . . . If a state overtly excluded people with “terminal” disabilities from suicide prevention laws and programs, it would undoubtedly violate federal civil rights laws such as the Americans with Disabilities Act. . .. Yet that is precisely the design and effect of the Oregon assisted-suicide law. A more devastating form of discrimination would be difficult to imagine. By assuming that it is irrational for a non-disabled person to end his or her life, but rational for a disabled person to do so, the law assumes that the non-disabled person’s life is intrinsically more valuable and worthwhile than that of a disabled person.
Assisted suicide also raises serious ethical concerns regarding the medical profession’s treatment of the disabled. It requires doctors to make difficult, if not impossible, determinations of a person’s competency and life expectancy, the consequences of which are both ultimate and irreversible. The availability of assisted suicide also distracts from the determination whether a person’s desire to die might be lifted with improved treatment, community-based health care or other measures that improve a person’s independence and dignity. . . .
The Court of Appeals avoided this analysis by holding that the Attorney General’s directive on prescriptions for assisted suicide “interferes with Oregon’s authority to regulate medical care within its borders” . . . If any federal restriction on the practice of medicine infringed upon a “fundamental” state function, it would call into question Congress’ entire regulatory scheme for prescription medication, which has been in effect for three decades and has been repeatedly upheld and enforced. . . . Indeed, it is difficult to understand how the practice of medicine could be considered solely a state function . . .
The Court of Appeal’s holding is of significant concern to amici beyond its implications for assisted suicide. Congress and federal agencies often regulate “medical care” to prevent abuse of or discrimination against people with disabilities. . . .For example, in Olmstead, this Court held that the unnecessary institutionalization of people with disabilities by states was discrimination under Title II of the Americans with Disabilities Act (ADA). Although Title II’s definition of discrimination did not explicitly identify unnecessary institutionalization, the Court relied in part upon the Attorney General’s regulations and interpretations of the Act in discerning Congress’ intent. . . . Although this interfered with a “medical” decision approved under state law (and carried out by the State itself), it was nevertheless understood as appropriate federal action.
According to NDY, many people who favor legalization of assisted suicide object to the involvement of disability rights organizations in the public debate. After all, they say, assisted suicide is about terminal illness, not disability.
The disability experience is that people who are labeled “terminal,” based on a medical prediction that they will die within six months, are — or almost inevitably will become — disabled. Furthermore, virtually all “end-of-life care” issues — access to competent health care, adequate pain relief, in-home personal care and flexible, consumer-responsive supports, peer counseling, family support — have been disability rights issues for decades.
In fact, although intractable pain has often been given as the primary reason for enacting assisted suicide laws, the reasons doctors actually report for issuing lethal prescriptions are the patient’s “loss of autonomy” and “feelings of being a burden.” These feelings arise when a person acquires physical impairments that necessitate relying on other people for help in tasks and activities formerly carried out alone. Studies of attitudes of terminally ill people toward assisted suicide and euthanasia confirm that interest in physician-assisted suicide appeared to be more a function of psychological distress and social factors than physical factors.
It should be noted that suicide, as a solitary act, is not illegal in any state. Disability concerns are focused on the systemic implications of adding assisted suicide to the list of “medical treatment options” available to seriously ill and disabled people.
NDY points out that the Oregon Law grants civil and criminal immunity to physicians providing lethal prescriptions based on a stated claim of “good faith” belief that the person was terminal, acting voluntarily, and that other statutory criteria were met. This is the lowest culpability standard possible, even below that of “negligence,” which is the minimum standard governing other physician duties. As the Oregon Reports on physician-assisted suicide make clear, the state has not been able to assess the extent of non-reporting or noncompliance with the law’s purported safeguards. There are no enforcement provisions in the law, and the reports themselves demonstrate that non-terminal people are receiving lethal prescriptions.
More disturbingly, the reasons doctors actually report for issuing lethal prescriptions are the patient’s “loss of autonomy” (87 percent), “loss of dignity” (80 percent), and “feelings of being a burden” (36 percent). People with disabilities are concerned that these psycho-social factors are being widely accepted as sufficient justification for assisted suicide, with most physicians not even asking for a psychological consultation (5 percent in 2004, 16 percent overall or the intervention of a social worker familiar with home and community-based services that might alleviate these feelings. The societal message is “so what?” or “who cares?” Recent government reports rank Oregon highest in the nation in elder suicide.
“The Oregon law is not about individual choice but rather physician judgments”, NDY says. “Studies consistently demonstrate that physicians and other health care providers rate the quality of life of people with significant disabilities and illnesses significantly below the individual’s rating of their own quality of life. The Oregon law gives physicians the power to judge whether a particular suicide is “rational” or not based on his or her prejudicial devaluation of the individual’s quality of life, and then to actively assist certain suicides based on that judgment. This should be viewed as a violation of the Americans with Disabilities Act, which prohibits discrimination based on disability. That is the core of the disability argument in the Gonzales v. Oregon case” 9-28-05 © 2005 North Country Gazette