July/August 1999

Visit Not Dead Yet's website ALSO SEE these short items accompanying this story: What's In A Name? The Duty to Die "We cannot legislate permission . . . " HMO executive drafted Oregon suicide law, says author. Busy - But Not Dead Yet. By Mary Johnson Mary Johnson edits Ragged Edge magazine. Battling a California right-to-die bill. Keeping an eye on Kevorkian sidekick Georges Redding. Preparing a brief in the Robert Wendland appeal. Not Dead Yet is busy. Too busy. Activists had no sooner gotten home from the Michigan trial of Jack Kevorkian, where their presence had been credited with finally locking up the man they referred to as "Ted Bundy with good PR," than they were off to Princeton to protest the appointment of Australian bioethicist Peter Singer to the faculty of the University's Center for Human Values. Many NDYers say Singer is more dangerous than Kevorkian. "Singer is not Kevorkian," says NDY supporter Ron Amundson, a professor of philosophy at the University of Hawaii. "He is respected in the academic community for work that doesn't touch on our issues." He adds, "Singer did not create the demand for genetic testing nor the demand for euthanasia. Most people believe these things without ever having heard of Singer. " "One of the reasons Singer is respected," says Amundson, "is that he really does say what other people are thinking but don't dare say." In addition to the Singer protest, Not Dead Yet was working on filing a brief in the appeals case of Robert Wendland. Wendland, paralyzed and unable to communicate due to brain damage after a 1993 auto accident, became the focus of a California court case in July 1995 when Wendland's wife Rose asked the hospital to remove his feeding tube, reportedly saying her husband had told her he would not want to live if he couldn't "be a husband, father or a provider." His mother, Florence Wendland, fought to keep him alive. Wendland supporters say he cannot walk or speak, but he is aware of his environment, breathes on his own, and has communicated nonverbally with other people. In Dec., 1997, San Joaquin County Superior Court judge Robert McNatt refused to okay the feeding tube's removal. Rose Wendland appealed the decision. The California appeals court will likely hear the case this fall. Wendland's case, like others NDY has been involved in, has become a cause célèbre with the right-to-life movement. NDY is often characterized, particularly by detractors, as being a pawn of pro-lifers, a charge that infuriates NDY leader Diane Coleman. A majority of Not Dead Yet supporters have been active in civil rights, women's rights and gay rights issues. Coleman warns NDY supporters "it's important we don't get too close to our allies on the topic." . "The right wing defines it as a 'right to life' issue," says NDY activist Janine Bertram Kemp. "Progressives define it as a 'choice' issue. But we say, 'Nothing about us without us' -- and we define it as an economic issue." . "People who call themselves progressives need to see this for what it is: a class struggle," says Coleman. Progressives have been deluded into thinking that assisted suicide is a simple dispute between "compassionate progressives" and "conservative right-to-life" proponents, says Coleman. Dion Aroner comes to mind. Aroner, a Democrat known for representing progressive causes, introduced a version of the Oregon right-to-die bill in the California legislature this spring. Aroner represents Berkeley, with its large and active disability rights community. Historically a friend of disability rights, she was frustrated when disability activists, many of them Not Dead Yet supporters, worked to defeat her proposal. One disability group noted that data from Oregon showed that all but one of those requesting medication to end their lives feared loss of autonomy, inability to participate in activities and loss of control of bodily functions -- "disability issues that we have been dealing with for decades," as they put it. Aroner's bill was tabled in June after efforts by disability, Latino and workers' coalitions kept it from gaining the support it needed in committees. "I don't think we can win this battle if we don't get the liberals and lefties on our side," says Amundson. Yet that has been a continuing struggle. It rankles NDY that groups like the Arc (formerly known as the Association for Retarded Citizens), brain-injury organizations and groups like the National Multiple Sclerosis Society have been slow to take positions on the issue. The reluctance, they say, stems from the fact that many groups' governing boards are dominated not by people with disabilities but family members who are themselves ambivalent about having to care for severely disabled relatives. Another theory popular among NDYers is that these groups have sought out board members who are "rich and connected," as one NDYer put it, who seek to be aligned with progressives supportive of the "right to die," such as the American Civil Liberties Union. To oppose a popular liberal idea "might cost them politically, even as it ravages their members," said one NDYer. "Our emphasis is on discrimination--especially disability bigotry, but also racism, ageism and socio-economic discrimination," says Coleman. "The struggle to save 'burdensome' and 'nonproductive' lives needs to be recognized by people who think of themselves as 'liberal' or 'compassionate.'" "It's not compassion, it's contempt," she wrote in an opinion piece in the Chicago Tribune this spring. Many right-to-die groups use some form of the word "compassion" in their names, says Andrew Porter, who teaches philosophy at Berkeley's Graduate Theological Union. "'Com-passion' actually means 'co-suffering.' People of real compassion are willing to suffer with the medically unattractive, because people of real compassion know that deep down, they are just like the medically unattractive. "The pretense of compassion" is what Porter calls a "cover" for assisted suicide proponents. "It's not compassion at all," he says. "In no way is it a willingness to suffer with the suffering." He, like Coleman, says it's really a form of contempt. To NDY's Senior Research Director Stephen Drake, the growth of the assisted suicide movement -- NDY wags call it "physician-induced death," or PID -- bespeaks a society which cannot face the idea of living with disability. "We expected Big Medicine to make us all perfect," Amundson says. "In the 60s and 70s everyone believed in the limitless growth of medical science. You can actually find people suggesting that serious disabilities would be wiped out in the future as medicine advanced. "Exactly the opposite happened," he continues. "Medical science made it possible to live longer with serious disabilities and illnesses. This was shown dramatically in the Vietnam war -- hundreds of people survived with injuries that would have killed them in previous wars. And prior to the discovery of antibiotics, quads had very low life expectancies. This created a mismatch in public perception. We expected Big Medicine to make us all perfect," said Amundson. "But what Big Medicine actually did was very different. It made it possible for more and more people who were more and more disabled to live disabled.That's a big disappointment (in public perception). We expected to be able to live to 100 with perfect bodies, and what we got was the ability to live to 100 even when we're seriously disabled. "From this perspective, PID can be seen as a sour-grapes reaction to the failure of Big Medicine to keep us perfect. 'If I can't be perfect, I want to die.' " The "logic of euthanasia proposals" rests on an pre-supposition (that's never actually stated) "that death is better than disability" says Porter. Safeguards in right-to-die bills, he argues, "shift attention away from the essential presupposition in a way that nevertheless grants that essential presupposition." Coleman, an attorney, notes that the only "ironclad" safeguards in any of the right-to-die laws now being proposed are for the doctor or the person assisting in the death. Not Dead Yet is watching bills in a number of states, including Maine and Wisconsin. Californians for Disability Rights told Aroner it was "dangerous to assume" safeguards would be adequate in a culture "where medical costs are a growing concern, and where acceptance of disability by general society is a goal we have yet to achieve." . "I believe that members of every community should be trusted to make the right decision for themselves based on their own ethical, moral, religious and personal beliefs," Aroner had written to disability acivist Alana Theriault, who had organized opposition to Aroner's bill. Aroner was "missing the point," Theriault told her. "As long as people fear being a burden on their loved ones, they will lean more readily toward the option of suicide. "This is not about free will in a multi-option situation. This is not about 'the pain is too great.' This is about money and access to health care." Those were not the "side issues" Aroner thought they were, Theriault told her. "There are a vast number of uninsured, working, middle-class Californians who are forced to spend down their resources to a mere $2,000 if they're single, and $3,000 if they're married before they can access Medi-Cal [Medicaid]," says Theriault. By the time people realize they have a costly, eventually terminal condition, "they cannot buy private health insurance due to pre-existing condition clauses." And Medicare pays for neither medications nor attendant services, says Theriault. "They and their family members must spend everything they have. "If that's not a guilt trip to hasten death, I don't know what is." "Talk with constituents who support your bill," Theriault advised Aroner. "How many of them are confident that they have a good health plan? Ask them if they are willing to spend down their resources that they worked all their lives for in order to pay for attendant care when they can no longer bathe themselves. Would they feel comfortable having their family and friends feeding them and wiping their bottoms over the months before they die in order to save the money?" We have left the dark tunnel of naivete and reached the light of reality," the World Health Organization's David Nabarro told reporters in May. "You can't think about healthcare without thinking about available resources. Economic issues are now at the center of health." Marta Russell, longtime disability activist and author of Beyond Ramps: Disability at the End of the Social Contract (Common Courage Press, 1998) argues that today's death politics is the logical extension of free-market capitalism. "No one has a right to live unless they have some economic worth" -- either by working themselves or making a profit for someone. "Assisted suicide becomes the hot social issue, while universal health care remains back-burnered, off the agenda." "The right to die will become the duty to die," beats like a refrain in conversations with Not Dead Yet members. Bioethicists like Singer have been attacking access to health care for years -- "utilitarianism" and "communitarianism' are just other terms for it, says Not Dead Yet. These are concepts embraced by "physically buff yuppies with lots of disposable income but without the emotional, spiritual and intellectual contributions of much of the disability community." Coleman has dubbed them "The 4 Ws": "The white, worried, well off and well." . Several recall a panel at Michigan State University a few years ago on Ethics and Managed Care at which ethicist Leonard Flecki suggested disabled people were too "biased" to make the decisions as to the kind of care they should receive. Amundson says, "Medicine is not seen as working out compromises between the natural bodily reality of disease and disability and our desire to live and flourish. It is seen as creating and maintaining perfection." When some people realize that perfection is not able to be maintained, "they get all huffy and insist on death as an alternative 'choice' to imperfection. "We can see the arrogant disdain for one's own feared frailty in practically every statement from the Hemlock Society," he says. "The public needs a change in how medical science is seen," Amundson continues. "It's already happening with cancer and AIDS -- they are becoming diseases that people learn to 'live with,' like heart disease. They're not just enemies to be conquered. We need to change minds about disability in the same way. "That's why the cure fetishists, like Chris Reeve, are a problem." Private health insurance paid for only a few weeks of home care, Theriault reminded Aroner. "My nine hours a day of attendant care costs $1,700 a month, and my ventilator cost $2,900 a month." "These services have a sticky web of strings attached, indicating that I am a burden that society would rather not have," she continued. "Untangle that web first -- then we can talk about death with dignity." "The challenge," says Russell, "is to get beyond our current social adolescence and build an inclusive, more equitable and creative community where the economy serves people rather than enslaving them." "Most people, including health practitioners, cannot imagine living in a body that weighs 45 lbs., with limbs that can barely move and lungs that move air at 10% of average capacity," Theriault says. Since her twelfth birthday, rehabilitation doctors had told her mother "to not expect me to live through the winter. "These were 'experts' on disability," says Theriault. "I now refuse to discuss life expectancy with a physician. " The "incredible privilege of having peers who are surviving and thriving with their disabilities beside me, and a host of wonderful non-disabled allies" has given Theriaut a way "to fight depression and utilize the grossly inadequate support services that society has tossed in my general direction," she says. This is the first time in history that a euthanasia movement's victims have fought back, says Coleman. And that gripes the right-to-die movement, she says. Use of the term "compassion" allows right-to-die groups to assume the moral high ground, says Porter: "When A is compassionate toward B, A can't be hurting B! and if B complains, then B is ungrateful. If B complains, A is justified in treating B like a bad child -- or worse, like someone who is anti-social." "If you are compassionate, then you can be patronizing toward your intended victims," he adds. What Porter calls "the rhetorical master-stroke" is to get some prospective victims to {ask} for right-to-die laws. "'How can they be victims if they have asked for this?'. "You get some of the prospective victims to buy the rationale about compassion, to buy the essential presupposition (without really spelling it out too clearly), and they can actually ask for what you want to do!. "When people object, you can escalate your reply to shrill outrage, How could the objectors be so heartless! How could the objectors be so cruel! How could the objectors be so inhumane! How could the objectors be so evil!. "The uproar of shrill outrage is usually enough to frighten the objectors off, and in any case, it will convince the audience." The same warnings about "physician induced death" would be considered progressive were they coming from African Americans, women or gays, says Drake. His goal is to "get an acknowledgment in the press that people with disabilities are hated." There's a sense among NDY members that the euthanasia movement is a backlash to the increased rights granted disabled people in the U.S.; that people have had enough with cripples demanding equality. But the hatred is covert; no one will admit to hating cripple openly. Silence is the real problem, says Coleman; that's why NDY's tactics aim to polarize. "We want to show the history of hatred," she says. "We are the front, the leading edge of the struggle." People won't be dissuaded from supporting the right to die by pointing out the logic its proponents use to dupe them, says Porter. You can make them feel uncomfortable -- if you can get their attention -- but that won't stop them. "The great majority of voters don't care about the poor or the disabled," he continues. "They are afraid for themselves or their relatives. That fear has to be allayed. "They will sacrifice the poor and the disabled in order to protect themselves, out of a feeling of necessity, if that fear is not allayed." Somebody needs to propose an alternative for society, he says -- so people "can afford to care for an ailing relative" and so the relative "can feel comfortable and loved." I was born in '65," says Not Dead Yet's Michael Volkman. "It is simply amazing, this steady rise in the number of people around me who care less and less about the world around them. There's no sense of history, of culture, of community -- except for what I see during those all-too-brief encounters with people from the disability rights movement." "I grew up nondisabled -- and grew up with huge stereotypes about disability," says Carrie Lucas, who has been working for the Colorado Cross Disability Coalition while finishing her master's degree. "We are the first generation to go to school after the Individuals with Disabilities Education Act." Yet that hasn't seemed to make a difference in perception, she says. "We learned in school about the Southern Freedom Movement, we learned about Vietnam protests, we learned about feminism and environmentalism. We never learned about disability rights. Those words were never spoken in the same sentence throughout my school and college careers. Disability is so far off the radar screen for most Gen Xers that it isn't even in the same solar system." "I'm beginning to think that we may have to take on a responsibility that goes way beyond PID," says Volkman. "Our collective perspective as a result of our experiences with discrimination and affecting systems change is so unique that we may be the best, if not the only, group of people who can take the kind of leadership that would set things on the right track. "We look out for each other in a way that is automatic and needs no explanation; it is a duty we all share as a community. Whatever our ethnicities, politics, or economic status, we maintain our principles of equality, respect, and justice. "If we can figure out a way to use this effectively, we have the potential to plot the course for humanity." Just weeks after Kevorkian's sentencing, authorities in Michigan and New Mexico began an investigation into the actions of Kevorkian sidekick psychiatrist Georges Reding, now suspected of being responsible for deaths in NM and other states, including that of 54-year-old New Mexico woman who had MS. Authorities say a grand jury indictment is likely but that Reding probably won't do jail time. For Not Dead Yet, that might be time for another action. So will Labor Day, 2000. That's when the World Federation of Right To Die Societies gathers in Boston. What's in a name? 'ey! I'm not dead yet!'. Indignant protest of peasant with bubonic plague as he's pitched onto a pile to be carted off to be buried, in Monty Python And The Holy Grail. Who says NDY doesn't have a sense of humor? . "During the first four months of 1996, two federal Circuit Courts had ruled that assisted suicide is a constitutional right, and Kevorkian was acquitted in the assisted suicides of two women with non-terminal disabilities," says Coleman. " I knew it was time to form a group to take the issue to the streets." The group was born that April when ADAPT activist Bob Kafka suggested the name at a disability conference and over 40 individuals and groups signed on to endorse Coleman's Congressional testimony against assisted suicide. The Duty To Die Modern medicine and an individualistic culture have seduced many to feel that they have a right to healthcare and a right to live, despite the burdens and costs to our families and society. But in fact there are circumstances when we have a duty to die. As modern medicine continues to save more of us from acute illness, it also delivers more of us over to chronic illnesses, allowing us to survive for longer than we can take care of ourselves. It may be that our technological sophistication, coupled with a commitment to our loves ones, generates a fairly widespread duty to die." John Hardwig, "Is There a Duty to Die?" Hastings Center Report, March/April 1997. "We cannot legislate permission . . . " Until all people with disabilities have adequate long-term care, a comprehensive safety net to protect us from abuse, access to health care that promotes quality of life, the option to work and get an equal education -- and the ability to live where and with whom we wish -- we cannot legislate permission to kill a specific group of people who has historically been killed in order to release others from physical, financial and emotional burdens. We should indeed be talking about Death with Dignity. But we cannot legislate these issues on a treacherous and uneven playing field. Alana Theriault. HMO executive drafted Oregon suicide law, says author. Oregon Compassion in Dying Federation executive director, Barbara Coombs Lee, who helped write Oregon's assisted suicide law, was an executive with Portland-based managed care companies in 1993 and 1994, the years in which she wrote and advocated for the law's passage, says "Forced Exit" author Wesley Smith. Information on Lee's position with the HMOs was mentioned in a brief article in the Aug. 24, 1997 Portland Oregonian newspaper. The Portland-based managed care company, then named the Ethix Corp., was purchased by New York Life in late 1994, according to a May 1997 Oregon Business Journal story. Back to table of contents