In Our Misery

Illustration by Mr. Fish

Poor Terri Schiavo, at long last, has been mercifully released from the prison of her lifeless body. But if you think that puts an end to the Republicans’ assault on the right to die with dignity, think again. Another attempt to pass sweeping federal restrictions on that right will soon be made by the GOP Congress — even as California’s Legislature is poised to pass a new law giving some terminally ill patients the right to legally obtain prescriptions for life-ending medication.

The chairman of the U.S. Senate health committee, reactionary Republican Mike Enzi of Wyoming, opens hearings this week on proposals for more federal control of an individual’s right to choose death without suffering. In the House, a member of the powerful Appropriations Committee, Florida GOP Representative Dave Weldon — a doctor who is an opponent of stem-cell research, and a condom opponent who has tried to slash funding for HIV prevention — has, with the approval of Speaker Dennis Hastert, re-introduced a bill that the House passed two weeks ago but the Senate rejected. HR 1151, the so-called Incapacitated Person’s Legal Protection Act, requires federal courts to intervene at the request of any family member or loved one if a state court “authorizes or directs” the withholding of food or life support when there is an alleged dispute over the patient’s wishes. (Florida Christian primitive Mel Martinez, Bush’s former housing secretary, has introduced the same bill in the Senate.)

If this bill becomes law, the federal courts would be clogged with thousands of Schiavo cases, in which parents or relatives who are religious extremists could obstruct an individual’s wish to die without suffering, through litigation that could drag on for years.

“This legislation is motivated by nothing more than pandering to a small group — and Congress has done enough of that in the Schiavo case,” growls Westside Los Angeles Congressman Henry Waxman, the ranking Democrat on the House Government Reform Committee and a ferocious critic of Bush administration health policies. In the wake of polls showing overwhelming public opposition to congressional intervention in the Schiavo case — 70 percent to 80 percent, depending on the poll — Waxman told the L.A. Weekly, “many Democrats” who voted for the bill the last time “are reconsidering their votes.”

When The New York Times reported on the new Republican push for clamping down on the right to die last week, its story gave the impression that the man who led the fight against Tom DeLay’s strong-arm Schiavo bill — Massachusetts Democratic Congressman Barney Frank — was in favor of new legislation regulating this choice by those terminally ill or totally incapacitated. Not true, Frank told me. “There has been no showing that there’s a failure on the part of the states to protect the rights of the disabled. Absent that, there’s absolutely no need for any such legislation,” Frank says. He adds that the Weldon-Martinez bill “violates two constitutional principles: federalism and the separation of powers — and it leaves out the economics of the circumstances of those who want to exercise a right to die. We need hearings that will take up the whole range of issues involving the disabled — the Bush administration’s cuts in Medicare and in housing for the disabled, its failure to provide adequate health care, and all those things that surround the decision to die, to make sure that a choice to die isn’t linked to being poor.” Although nearly half the House Democrats who voted on the DeLay Schiavo bill voted for the Weldon-Martinez bill, Frank, too, says, “Many of my colleagues have been chastened by the public’s negative reaction to it in the polls. I’ve talked on the floor to at least 10 Democrats who no longer feel that way and regret their vote.” Frank believes that, if the public pays attention to the Weldon-Martinez bill, it will have a tougher time passing the House again. But that’s a big “if.”

Besides the push by the Christian right for such legislation, much of the impetus for new federal regulation is coming from groups claiming to represent the disabled. But there’s a serious disconnect between the leadership of some of those groups and the disabled themselves. Three consecutive Louis Harris polls have found that more than 60 percent of people with disabilities support the right to assisted dying for competent, terminally ill people. In the most recent Harris survey of disabled people on this question, from December 2001, a whopping 68 percent of respondents with disabilities support the right to assisted dying. Among all Americans, 65 percent of respondents to a 2002 Harris poll supported the legalization of aid in dying for the terminally ill. In a number of other studies, people with AIDS support the right to assisted dying by anywhere from 60 percent to 90 percent.

One of the reasons for this huge difference in opinion between disabled Americans themselves and some disabled organizations is that many of the latter have been on the take from ultraconservative members of the Philanthropy Roundtable, a collection of foundations that have funded conservative causes ranging from abolition of Social Security to anti-tax crusades and United Nations conspiracy theories. A conservative counterpart to the mainstream Council on Foundations, the Roundtable initially operated under the aegis of the Institute for Educational Affairs, an organization founded in 1978 by two well-known figures of contemporary conservative politics, William Simon and Irving Kristol. The Philanthropy Roundtable members’ founders include scions of America’s wealthiest families, like Richard Mellon Scaife (heir to the Mellon industrial, oil and banking fortune and a well-known financier of ultraright causes), Harry Bradley (electronics), Joseph Coors (beer) and the Smith Richardson family (pharmaceutical products).

“Team Schiavo’s Deep Pockets,” an investigation by Working for Change columnist Bill Berkowitz — who monitors the right — demonstrated that groups with anodyne-sounding names like the National Organization on Disability, the World Institute on Disability, and the International Task Force on Euthanasia and Assisted Suicide — as well as the right-wing legal team representing Schiavo’s ultraconservative Catholic parents — have received millions from Philanthropy Roundtable affiliates, including the Scaife Foundation and the Richard and Helen DeVos Foundation (run by the heirs to the Amway fortune, Christian-right extremists who’ve bankrolled anti-gay initiatives like last year’s successful referendum in Michigan banning gay marriage and domestic-partnership benefits). Unfortunately, in the wall-to-wall TV coverage surrounding the Schiavo case, one heard only the voices of these well-funded extremists, like the spokesman for Schiavo’s parents, anti-abortion terrorist Randall Terry, but never the voices of advocates for the disabled who believe in the right to die with dignity, like’s president, Barbara Coombs Lee, a nurse and lawyer who argues that “the greatest fear of our constituents is that other people — complete strangers — will make end-of-life decisions for them. And God forbid that it be politicians.”

CompassionInDying’s Washington representative, Robert Raben, a former assistant attorney general in the Clinton administration who is leading the lobbying against the Weldon-Martinez bill, mocks the conservatives who are against Big Government — except in the bedroom and the hospital room. He says, “The Republicans are all over the place — this is a real quandary for the far right, because what do they do when people say, ‘I don’t want to live this way’? Take away their right to die? That’s what this bill does.”

Alan Toy, who has used a wheelchair since contracting polio at the age of 3, is a veteran disability-rights activist, former chairman of Santa Monica’s Americans With Disabilities Act Community Advisory Committee, and former vice chairman of California’s State Independent Living Council; he’s also an actor who’s appeared in films like In the Line of Fire and Born on the Fourth of July, and is widely recognized as Professor Finley, the nasty cult leader on Beverly Hills 90210. And he’s a sharp critic of the line taken by many disability groups over the Schiavo case. Says Toy:

“It’s generally thought okay to put animals like dogs or horses out of their misery, but we’re only supposed to help children and people with disabilities live, no matter what their individual circumstances may be. How does this notion volley with our complaints about society’s perpetual infantilization of people with disabilities? Isn’t it contradictory to abhor that tendency in others, while not allowing ourselves to make very adult decisions like how and when to die? And even if one agrees that people with disabilities shouldn’t be allowed to get help to die, isn’t it crossing the line into arrogance to argue that no one should be given assistance?”

Moreover, Toy adds, “I also sense a kind of perpetual victimization at the core of arguments about slippery slopes and mass euthanasia for the severely disabled. Sure, the post-Holocaust cry of ‘never again’ has been mocked by recent slaughters in Rwanda and the Balkans, proving that we are still a long way from being a fully evolved species. But does anyone really believe that proponents of assistance in dying want to kill off everyone with a significant disability, or that we are all at risk of mass extermination?”


Toy is a supporter of new legislation now making its way through the California Legislature. Next week, the Assembly’s health committee will vote on the California Compassionate Choices Act, co-sponsored by Assembly Majority Whip Leonard Levine of Van Nuys — and, assuming it is approved, the bill could be before the entire Assembly by June. Modeled on Oregon’s Death With Dignity Act (now being challenged in the courts by Bush’s Justice Department, despite its having been approved by Oregon voters in a referendum), Levine’s bill provides for medically supervised suicide for the terminally ill, but only if they have six months or less left to live. And it contains many safeguards: A patient must be mentally competent and make three requests — two oral and one written — for a prescription for life-ending medication; two physicians must evaluate the patient; there are two waiting periods before the medication can be issued; and the patients must take the drugs themselves — no one can assist them.

A March 2 Field Poll showed that 70 percent of Californians support the idea that “incurably ill patients have the right to ask for and get life-ending medication.” In addition, 68 percent of the California public, including 62 percent of seniors age 65 or older, would personally want to have this option if they themselves were terminally ill — numbers basically unchanged since Field began polling this issue 25 years ago. Assemblyman Levine says he’s spoken to Governor Arnold Schwarzenegger’s chief of staff and legislative counsel, “who say Arnold is ‘open to the idea’ of the bill.” And Levine argues that the right to die is a very personal choice: “If you don’t want to do it, then don’t do it. But why should your moral superiority tell me that I should suffer?”

That’s an unanswerably good question.

Doug Ireland can be reached through his blog, DIRELAND, at


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