"Why Don't You Just Die?" Facing Hard Truths about Disability and Dependency Gary Presley  Disability and Liberal Humanist Thought To the those who would ignore us, we must say "Nothing About Us Without Us. To the liberal humanist who would tell us to take the easy way out, we must say Not Dead Yet. The people we regard as conservatives within what passes for political philosophy in the USA might consider physical and mental disability as the consequence of fate, a fact of life to be accepted. That same school tells us the Americans with Disabilities Act infringes upon property rights. Those we call liberals tend to support so-called human rights over property rights, and we thank them for the support of legislation like the ADA. However, within that humanist philosophy, you are more likely to see support for right-to-die and euthanasia laws. Right-to-die laws - assisted suicide laws - cannot be tolerated by people with disabilities who believe a humane and just society must appreciate and value of the life of every person. "Only 17 of Jack Kevorkian's 69 assisted suicides were of patients who were terminally ill, according to an analysis described in a letter to be published today in the New England Journal of Medicine."  - from a Detroit News story Speaking for the Silent "My dad was a very brittle diabetic and suffered two strokes a few months apart. Following his last stroke, he was dying. The hospital wasn't giving him anything in the form of liquids. My mother questioned that. She knew he was dying, but felt that liquids, even in IV form would make him feel better. The doctor granted my mother's request. My mother believed that even unconscious or comatose, he still could feel discomfort. I think she was right. I know I felt better about it." In Charlotte, North Carolina on Monday, December 11th, according to Observer reporter Karen Garloch, "Fifteen disabled people and advocates for the disabled carried signs and chanted Not Dead Yet and Let Her Live outside the Mecklenburg County Courthouse on Monday, protesting a mother's request to withdraw food and water from her physically and mentally disabled daughter. 'This is just unthinkable,' said Eileen Teachout-Smith, assistant director of Programs for Accessible Living, an advocacy agency for the disabled. 'It affects us all. It could be any of us. We have to be vocal and ever present.'" Other disability activists, noting that both the hospital ethicist and the attending physicians had agreed to the action wondered why such eagerness to act contrary to the Hippocratic Oath. First do no harm. Garloch did report "One of the doctors who testified was Bill Mazzella, a third-year medical resident at Carolinas Medical. He declined to speak to The Observer, but others who know details of the case said he continues to disagree with the mother's decision to let her daughter die. Activists also found it curious that the lawyer representing the mother demanded the hearing be closed. "People with disabilities are not ill, and starving people to death is not humane," said PAL's advocacy coordinator, Linda Linfors, who like the other demonstrators has no first-hand information about the case. "We need to presume that there's a will to live rather than a will to die."     The question is both political and personal. The question can be both benign and brutal. Even a cursory reading of history tells us people with disabilities were among the first to be swept up in the horrors of Nazi genocide during the Third Reich. Today's newspapers remind us people with disabilities can be killed in the name of humanism as easily as they can in the name of racial purity. Last month newswires buzzed with the word Holland revamped laws legalizing euthanasia, "The reform of the Netherlands' law legalising mercy killings is the addition of a special criminal liability exclusion to Articles 293 and 294 of the Dutch Criminal Code." Words and Meaning "Voluntary euthanasia is the ending of the life of another person at their request," says an international society promoting legalization of the concept. The organization's Web page is illustrated with a picture of a healthy, happy woman saying, the goal is to "give me control over which treatments I do and do not want." And disability activists say, Write a law to that effect, and our society will view human life as subjective rather than sacred, leaving people with disabilities the obligation to justify their continued existence. From Theory to Reality In Charlotte, North Carolina early in December, a woman with disabilities was hospitalized after suffering a seizure. Her condition apparently deteriorated. She was placed on a ventilator. At some point in the treatment sequence, the ventilator was removed, but the woman did not die. "UNC Charlotte medical ethicist Rosemarie Tong, who has not been involved in the woman's case, said decisions of whether to withdraw food and fluids from a person who has never been competent to express his or her wishes 'are the most controversial, ethically, legally and morally.' ... 'This gets into some of the deepest issues people have about quality of life and the intrinsic value of human beings and yet the desire not to have somebody suffer unnecessarily.' ... 'You usually want to err on the side of continuance rather than discontinuance. You want to be awfully sure.' "  - from a Charlotte Observer story by Karen Garloch "When that piece of equipment was removed, she continued to live, but is unable to talk. Her guardian and the doctors at Carolina's Medical Center agreed to withdraw food and water from her," so says a report issued by disability activists in the Charlotte area - who characterized the action as legalized assisted euthanasia. Looking Reality in the Face Three things are exceptionally odd about the North Carolina case. Let's look at the article written by Karen Garloch for the Charlotte Observer. The physicians' acquiesence to involuntary euthanasia: "Neither the woman's doctors nor the hospital's medical ethicist, who agreed with the decision to withdraw food and water, have talked to The Observer. The hospital and the governor's council, citing confidentiality concerns, decline to name the woman." The woman has recuperated: "Raburn said her staff received a call from one of the patient's former caregivers who worried that the young woman was being allowed to starve to death ... Raburn said the former caregiver said the patient's health has been restored to her pre-hospital condition. She is mentally retarded and has multiple physical impairments, Raburn said. She cannot walk, talk or feed herself." The guardian's responsibility did not change: "Although the patient's mother has been her legal guardian for 10 years, the mother and daughter have not lived together during that time, Elkins said he was told. When she was hospitalized, the patient was living in a 24-hour care center, he said." The warehousing of disabled people in nursing homes - raw material for profit-oriented enterprises - is another story. Does the issue in North Carolina case is relate to the fact someone's right-to-life may be in the process of being decided by people who may have something to gain by the termination of that life?