—a Nazi writer quoted by Robert J. Lifton in The Nazi Doctors: Medical Killing and the Psychology of Genocide
The case of Terri Schiavo has been framed by the media as the battle between the “right to die” and pro-life groups, with the latter often referred to as “right-wing Christians.” Little attention has been paid to the more than twenty major disability rights organizations firmly supporting Schiavo’s right to nutrition and hydration. Terri Schindler-Schiavo, a severely disabled woman, is being starved and dehydrated to death in the name of supposed “dignity.” Polls show that most Americans believe that her death is a private matter and that her removal from a feeding tube—a low-tech, simple and inexpensive device used to feed many sick and disabled people—is a reasonable solution to the conflict between her husband and her parents over her right to life.
The reason for this public support of removal from ordinary sustenance, I believe, is not that most people understand or care about Terri Schiavo. Like many others with disabilities, I believe that the American public, to one degree or another, holds that disabled people are better off dead. To put it in a simpler way, many Americans are bigots. A close examination of the facts of the Schiavo case reveals not a case of difficult decisions but a basic test of this country’s decency.
Our country has learned that we cannot judge people on the basis of minority status, but for some reason we have not erased our prejudice against disability. One insidious form of this bias is to distinguish cognitively disabled persons from persons whose disabilities are “just” physical. Cognitively disabled people are shown a manifest lack of respect in daily life, as well. This has gotten so perturbing to me that when I fly, I try to wear my Harvard t-shirt so I can “pass” as a person without cognitive disability. (I have severe cerebral palsy, the result of being deprived of oxygen at birth. While some people with cerebral palsy do have cognitive disability, my articulation difference and atypical muscle tone are automatically associated with cognitive disability in the minds of some people.)
The result of this disrespect is the devaluation of lives of people like Terri Schiavo. In the Schiavo case and others like it, non-disabled decision makers assert that the disabled person should die because he or she—ordinarily a person who had little or no experience with disability before acquiring one—“would not want to live like this.” In the Schiavo case, the family is forced to argue that Terri should be kept alive because she might “get better”—that is, might be able to regain or to communicate her cognitive processes. The mere assertion that disability (particularly cognitive disability, sometimes called “mental retardation”) is present seems to provide ample proof that death is desirable.
Essentially, then, we have arrived at the point where we starve people to death because he or she cannot communicate their experiences to us. What is this but sheer egotism? Regardless of one’s religious beliefs, this is obviously an attempt to play God.
Not Dead Yet, an organization of persons with disabilities who oppose assisted suicide and euthanasia, maintains that the starvation and dehydration of Terri Schiavo will put the lives of thousands of severely disabled children and adults at risk. (The organization takes its name from the scene in Monty Python and the Holy Grail in which a plague victim not dying fast enough is hit over the head and carted away after repeatedly insisting he is not dead yet.) Not Dead Yet exposes important biases in the “right to die” movement, including the fact that as early as 1988, Jack Kevorkian advertised his intention of performing medical experimentation (“hitherto conducted on rats”) on living children with spina bifida, at the same time harvesting their organs for reuse.
Besides being disabled, Schiavo and I have something important in common, that is, someone attempted to terminate my life by removing my endotracheal tube during resuscitation in my first hour of life. This was a quality-of-life decision: I was simply taking too long to breathe on my own, and the person who pulled the tube believed I would be severely disabled if I lived, since lack of oxygen causes cerebral palsy. (I was saved by my family doctor inserting another tube as quickly as possible.) The point of this is not that I ended up at Harvard and Schiavo did not, as some people would undoubtedly conclude. The point is that society already believes to some degree that it is acceptable to murder disabled people.
As Schiavo starves to death, we are entering a world last encountered in Nazi Europe. Prior to the genocide of Jews, Gypsies, and Poles, the Nazis engaged in the mass murder of disabled children and adults, many of whom were taken from their families under the guise of receiving treatment for their disabling conditions. The Nazis believed that killing was the highest form of treatment for disability.
As the opening quote suggests, Nazi doctors believed, or claimed to believe, they were performing humanitarian acts. Doctors were trained to believe that curing society required the elimination of individual patients. This sick twisting of medical ethics led to a sense of fulfillment of duty experienced by Nazi doctors, leading them to a conviction that they were relieving suffering. Not Dead Yet has uncovered the same perverse sense of duty in members of the Hemlock Society, now called End-of-Life Choices. (In 1997, the executive director of the Hemlock Society suggested that judicial review be used regularly “when it is necessary to hasten the death of an individual whether it be a demented parent, a suffering, severely disabled spouse or a child.” This illustrates that the “right to die” movement favors the imposition of death sentences on disabled people by means of the judicial branch.)
For an overview of what “end-of-life choices” mean for Schiavo, I refer you to the Exit Protocol prepared for her in 2003 by her health care providers (available online at http://www.cst-phl.com/050113/sixth.html). In the midst of her starvation, Terri will most likely be treated for “pain or discomfort” and nausea which may arise as the result of the supposedly humane process of bringing about her death. (Remember that Schiavo is not terminally ill.) She may be given morphine for respiratory distress and may experience seizures. This protocol confirms what we have learned from famines and death camps: death by starvation is a horrible death.
This apparently is what it means to have “rights” as a disabled person in America today.
Joe Ford ’06 is a government concentrator in Currier House.