The following Op-Ed is from the August/September 2005 issue of Free Inquiry
During the prolonged, extensive media coverage of the fierce battle this past spring over whether Terri Schiavo should live or die, almost entirely ignored was the insistent presence of individuals and organizations who were most personally concerned with both the outcome of the conflict and its legacy. Attention was continually focused on the Christian Right, who rallied for Schiavo's right to live-traditional Catholics, Protestant evangelicals, and religious prolifers. (Not all prolifers are religious, to which I can attest.) Overlooked, however, were the twenty-nine national disability-rights organizations that filed legal briefs and lobbied Congress to demonstrate that Terri Schiavo's was a disability-rights case, not a right-to-die case. They included the National Spinal Cord Injury Association; the National Down Syndrome Congress; the World Association of Persons with Disabilities; and the largest American assembly of disability-rights activists, the American Association of People with Disabilities. I have been reporting on disability rights for more than thirty years, and I have learned that many of these groups are determinedly secular and take care to not be linked with religious partisans or prolifers. Many disability-rights activists are pro-choice.
One such advocate is Mary Johnson, who runs an influential Web site linking many of these disability-rights groups (www.raggededgemagazine.com). She stated the concerns of the disabled brought to the fore by the Schiavo case: This isn't about Terri Schiavo anymore. . . . The danger faced by "incapacitated" or non-communicative persons-people who have been declared "incompetent" and their legal rights assigned to a "guardian"1-has been worrying disability rights activists for years. It is not about the "right to life"-it is about equal protection of the law. Over a dozen national disability groups have repeatedly urged Constitutional review of cases like Schiavo's.
Another writer who has drawn attention to the issue is Laura Hershey, who uses a ventilator. She wrote (the-nation.com, April 14, "Killed by Prejudice") that when she is hospitalized, she makes sure to write "Do resuscitate!" on all her medical charts because, the last time she was hospitalized, three hospital staffers assumed that, since she was disabled, her chart had to include a do-not-resuscitate order. In addition to "my disability identity," she writes, "I'm a lesbian feminist. I'm a secular thinker. . . . I abhor the fundamentalist religious movement's selective advocacy of some rights for some people." Tellingly, she adds: Yet many of my usual allies, people who support civil rights for other minority groups, have trouble embracing the rights of people with severe disabilities. . . . To my knowledge, no progressive or feminist group has tried to understand or address the injustices involved in this case of spousal and medical violence against a disabled woman (Terri Schiavo).
Many disability-rights advocates feel abandoned by the American Civil Liberties Union (ACLU). Despite the egregious conflicts of interest of Terri Schiavo's husband and guardian, Michael Schiavo (see my article, "Terri Schiavo: Judicial Murder," Village Voice, March 29, 2005), the ACLU was cocounsel in some of Michael Schiavo's court actions to remove the feeding tube of this forty-one-year-old woman who was not brain dead or comatose and breathed naturally on her own. Nor, according to neurologists I interviewed, was she in a persistent vegetative state.
Last November, Andrew J. Imparato, head of the American Association of People with Disabilities (on the opposite side of the ACLU in this case), testified before the Senate Subcommittee on Science, Technology, and Space on the rising dangers to the disabled of prenatal genetic testing technology. He spoke of the fear of many disabled about the return of eugenics:
When we start devaluing the lives of people with disabilities, we don't know where that's going to stop. You also need to take into account the financial implications of all of this. We have an economy that is not doing well as it once was and . . . one way to save money is to make it easier for people with disabilities to die.
Since the death of Terri Schiavo, disability-rights organizations have accelerated working with members of Congress to formulate legislation that will protect the Fourteenth Amendment rights of the disabled to due process and equal protection of the laws. One of the most liberal members of the Senate, Tom Harkin (D-Iowa), insists that "Where someone is incapacitated and their life support can be taken away . . . it is appropriate-where there is a dispute-that a federal court come in, outside of the state's jurisdiction, like we do in habeas corpus situations-and review it."
Having reported on the Terri Schiavo case for the past two and a half years-and having read all of the transcripts of court hearings-I am certain of one dimension of this case: Terri Schiavo was fatally denied due process because all the appellate courts, state and federal, relied wholly on the rigid misunderstanding of the central facts of the case by one Florida Circuit judge, George Greer. If this had been a case of a prisoner on death row with an execution date, the ACLU and a good many liberals would have demanded habeas review, from the beginning, of all the facts in the case.
Speaking with the disabled over the years, I have been told, "It's worth keeping in mind that you are only temporarily able. You could unexpectedly, suddenly, become one of us." Also heeding that warning was Dick Rogers of the San Francisco Chronicle, whose March 29, 2005, column was headed: "Schiavo's Story Is about Us All." Pat Anderson, a former lawyer for Terri Schiavo's parents in their daughter's case, has resoundingly made clear why Terri Schiavo's story is about us all: "Euthanasia in America now has a name-and a face."
Adding resonance to her point is the increasing refusal of intensive care by hospitals whose physicians and bioethics committees decide that it is "futile" to continue to treat those patients whose "quality of life" is so tenuous, they say, no further treatment is required. In "The Culture of Death: Who Will Decide When You Should Die?" (Village Voice, December 1, 2003), I quoted Nancy Valko, a nurse whose specialties include oncology, kidney machines, trauma, cardiac and cancer care, and patients who may or may not be in a persistent vegetative state (that diagnosis has a considerable error rate). Valko, who works in an intensive care unit in a St. Louis county hospital, also gives workshops on medical ethics and writes extensively on disability rights. One of her articles, "Futility Policies and the Duty to Die," reported: This theory that [some lives are no longer worth living] has now evolved into "futile care" policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are becoming involved. . . . Thus, the "right to die" becomes "the duty to die," with futile care policies offering death as the only "choice." . . . A poor prognosis, which can be erroneous and is seldom precise, will become a death sentence.
Two years ago, Terri Schiavo's father, Bob Schindler, aware of the increasing odds against his daughter, said: "We pay great lip service in this country to disability rights, but as the degree of a person's disability increases, the level of legal protection that person receives decreases."
Agreeing, I turn, as I often do, to Wesley Smith, author of Culture of Death: The Assault on Medical Ethics in America (Encounter Books) for a start on increasing the legal levels of protection for the voiceless and the otherwise acutely vulnerable of the 56 million American children and adults with disabilities. In the April 11, 2005, Weekly Standard, Smith advised that States need to review their laws of informed consent and refusal of medical treatment to ensure that casual conversations-the basis for Terri's death order [according to her husband and disputed, under oath, by one of her close friends]-are never again deemed to be the legal equivalent of a well-thought-out, written advance directive [preferably a durable power of attorney]. We don't permit the property of the deceased to be distributed on their oral statements. Surely human lives deserve as much protection. He adds:
If people don't want feeding tubes if they become profoundly incapacitated, the law permits them to refuse such care [and other treatment]. That isn't going to change. But if that is their desire, they have the responsibility to make sure that such wishes are put in a legally binding document.
Absent that, the law should require the courts in contested cases to give every reasonable benefit of the doubt to sustaining life and not causing death by dehydration.
As for the rising doctrine of futility noncare in American hospitals, Smith warns that "unless people object strongly to this duty to die . . . and unless [federal] legislatures take active steps to intervene, this new and deadly game of 'Doctor Knows Best' will be coming soon to a hospital near you."
You may have noticed that God has not appeared in this article. Many who have leaped into faith do work against the culture of death as it envelops the disabled, but this is far from their exclusive crusade. Secularists are a permanent, vital force in this battle-in part out of our own self-interest. For example, I take seriously Tom Harkins's warning about "guardians" of the incapacitated who feel "that their ward is as good as dead, better off dead-or that the guardian himself or herself would be better off without the ward." I hereby state on this public record that I will not consent to my "duty to die." The disability-rights community, like all activists groups, is not monolithic. But the one phrase that all of their members dread hearing is "quality of life." Some have told me of their parents telling them how, when their disabled child was born, or soon after, physicians counseled them to "let the child die" because his or her "quality of life" would not make that life worth living. From some of these disability rightists, I first learned of Dr. Leo Alexander. An Austrian-born professor of psychiatric medicine at Tufts Medical School, he had served as an expert at the Nuremberg trials, having interviewed the German physicians who implemented Hitler's pre-Holocaust euthanasia program. Dr. Alexander's subsequent article in the July 14, 1949, issue of the New England Journal of Medicine, "Medical Science Under Dictatorship," is central to understanding the historical root of the "quality of life" debate in this country that has quickened since the judicial death by dehydration of Terri Schiavo.
Dr. Alexander emphasized that whatever proportions the [Nazis'] crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. At first, there was merely a subtle shift in emphasis in the basic attitude of physicians. It started with the acceptance, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived.
This shift in emphasis began before Hitler came to power. In 1920 Karl Binding, a prominent German lawyer, and Alfred Hoche, a distinguished forensic psychiatrist, wrote a brief but influential book, The Permission to Destroy Life Unworthy of Life. In The Coming of the Third Reich, Richard Evans notes that "They emphasized that the incurable ill and the mentally retarded were costing millions of marks and taking up thousands of much-needed hospital beds. So doctors should be allowed to put them to death."
When Hitler came to power, many German doctors were ready to obey Hitler's directive to rid the nation of costly, unproductive "useless eaters." Before the Holocaust, "worthless" Germans were summarily eliminated by the Nazis. As an October 1, 2003, Associated Press story reported: A new study reveals Nazi Germany killed at least 200,000 people because of their disabilities-people deemed physically inferior-said a report compiled by Germany's Federal Archive. Researchers found evidence that doctors and hospital staff used gas, drugs and starvation to kill disabled men, women and children at medical facilities in Germany, Austria, Poland, and the Czech Republic. Concluding his 1949 New England Journal of Medicine article, Dr. Alexander emphasized, "It is important to realize that the infinitely small wedged-in lever from which this entire trend of mind received an impetus was the attitude toward the non-rehabilitable sick." (Emphasis added.)
Shortly before he died, Dr. Alexander read an article in the April 12, 1984, New England Journal of Medicine signed by ten doctors from such prestigious institutions as Harvard Medical School, Johns Hopkins University School of Medicine, and the University of Virginia Medical Center titled "The Physicians' Responsibility Toward Hopelessly Ill Patients." These healers advocated the withdrawal of artificially administered nutritional support-including fluids-from various kinds of patients, including those in "a persistent vegetative state," without mentioning how problematic the diagnosis of that state was and continues to be.
These distinguished physicians claimed it was "morally justifiable" when a patient is in a persistent vegetative state, or is otherwise nonrehabilitative, to withhold antibiotics, feeding tubes, and hydration, "as well as other forms of life-sustaining treatment, allowing the patient to die." A less Orwellian newspeak way of putting that would have been: "allowing the caregiver to kill the patient." After he'd finished reading the article, Dr. Alexander, depressed, told a friend, "It is much like Germany in the '20s and '30s. The barriers against killing are coming down." And indeed they have been coming down, as indicated by the continually growing doctrine of "futility" noncare in American hospitals, hospices, and bioethics committees.
As disability-rights activists mobilize to alert legislators and the rest of us to the legitimizing of euthanasia in this country for those whose "quality of life" makes them useless eaters, some of them point to a widely publicized letter that has long resonated within the disability-rights community. The letter was written in reaction to the increasing euthanizing of infants with Down Syndrome and other signs of inferior "quality of life." The letter by Sondra Diamond appeared in the December 3, 1973, Newsweek.
Due to severe brain damage incurred at birth, I am unable to dress myself, toilet myself, or write; my secretary is typing this letter. Many thousands of dollars had to be spent on my rehabilitation and education in order for me to reach my present professional status as Counseling Psychologist.
My parents were . . . told 35 years ago that there was little or no hope of achieving meaningful "humanhood" for their daughter. . . . Instead of changing the laws to make it legal to weed out us "vegetables," let us change the laws so that we may receive quality in medical care, education, and freedom to live as full and productive lives as our potentials allow.
On the other hand, in the July 1983 issue of Pediatrics, the official journal of the American Academy of Pediatrics, Professor Peter Singer-in an article entitled "Sanctity of Life" or "Quality of Life"-wrote:
If we compare a severely defective human infant with a nonhuman animal, a dog, a pig, for example, we will often find the nonhuman to have superior capacities, both actual and potential, for rationality, self-consciousness, communication, and anything else that can plausibly be considered morally significant. Only the fact that the defective infant is a member of the species homo sapiens, leads it to be treated differently from the dog or pig.
At the time Professor Singer's article was published, and increasingly since, infants whose "quality of life" is deemed not worth preserving have been euthanized, without, of course, their having had the opportunity to provide a living will or a durable power of attorney stating their wishes.
The questions before us, as part of the legacy of Terri Schiavo, are the crucial definitions of "quality of life," "futility," and "morally justifiable" with regard to the future of the disabled, from birth on. How this debate is resolved should be more than passing interest to those of us who are only temporarily able.
Nat Hentoff is a regular columnist for the Village Voice and the Washington Times, a United Media syndicated columnist, and the author of Living the Bill of Rights (University of California Press, 1999) and The War on the Bill of Rights and the Gathering Resistance (Seven Stories Press, 2004).
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