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Disability rights groups, typically supportive of individual liberty, have helped defeat bills out of fear that HMOs would see a chance to cut care. By James Ricci Five times in the last dozen years, bills on medically assisted suicide have risen in the California Assembly, and five times they have failed. In every instance, a great deal of the credit for their demise goes to a constituency associated with advancing personal choice and civil rights — namely, the disability rights movement. The latest attempt, Assembly Bill 374, which its backers called the California Compassionate Choices Act, failed to make it out of committee in June. Modeled on a statute passed by Oregon voters in 1997, it would have allowed mentally competent patients, whom doctors found had less than six months to live, to legally acquire lethal prescription drugs for self-administration. Many disability rights activists contend that the increasingly cost-conscious healthcare system, especially health maintenance organizations, inevitably would respond to legalized suicide by withholding expensive care from the disabled and terminally ill until they chose to end their lives. "HMOs are denying access to healthcare and hastening people's deaths already," said Paul Longmore, a history professor at San Francisco State and a pioneer in the historical study of disability. "Our concern is not just how this will affect us. Given the way the U.S. healthcare system is getting increasingly unjust and even savage, I don't think this system could be trusted to implement such a system equitably, or confine it to people who are immediately terminally ill." Longmore was stricken with polio in 1953, when the Salk vaccine, which would eradicate the disease, was first undergoing clinical tests. Now 60, he has limited use of only one hand and is dependent on a portable ventilator for breathing. Disabled people, Longmore said, "probably even more than most other citizens, understand the kind of suffering and needless pain that's inflicted on a lot of people and leaves some of them to prefer to die when they can't get the help they need." Disability rights advocates "have a lot of credibility on this," said Marilyn Golden, a policy analyst for the Berkeley-based Disability Rights Education Defense Fund who lobbied hard against AB 374. "We are on the front lines of this issue as it actually plays out in the medical system." Los Angeles activist Laura Remson Mitchell, 62, a San Fernando Valley activist with multiple sclerosis, kidney disease and diabetes, added that the federal government is considering cuts in aid "for people who are disabled and trying to live productive lives, and I find it disturbing that at a time like that we're even talking about assisted suicide, which would be a great way to cut costs and leave everybody with a clean conscience." Remson Mitchell said her own health has "been kind of going downhill" over the last year. "The conditions I have are expensive to treat, and it would be a lot cheaper for the healthcare system to just let my health go to the point where I would want to die." The activists believe the success they've had in combating assisted suicide legislation stems in part from the fact that they cannot be branded as religious conservatives and thus have more credibility among liberals and moderates. "We were not part of a moral or religious overlay, but, rather, we were speaking to the public policy," said Ann Guerra, who has multiple sclerosis and is executive director of an independent living center in Grass Valley, Calif. Disabled rights activists, however, resist being portrayed as the decisive force in the struggle, preferring to depict themselves as part of a broad coalition that includes religious believers and various medical associations. One of the bill's co-sponsors, Assemblyman Lloyd Levine (D-Van Nuys), said that "we really had two main groups working against us: the Catholic Church and the disability rights folks." Twenty-one states, including some "blue states" with progressive voting records, have rejected assisted suicide laws. "What has happened in each of these states," Golden said, "is that a cross-constituency has come together that spans left, right and center." Not all disability rights advocates oppose medically assisted suicide. Public opinion polls indicate rank-and-file disabled people tend to favor the practice, given adequate safeguards, but activists have attacked those polls as misleading. Alan Toy was 3 when polio struck him, the same year Longmore was afflicted. The disease cost Toy the use of his legs. At 57, he is an accomplished film actor, a member of the board of directors of the American Civil Liberties Union and founder of Living Independently in Los Angeles, an online resource for disabled people. Toy, who spoke out in favor of AB 374, said his fellow disability rights advocates' opposition to the medically assisted suicide laws "comes out of fear, and I'm tired of living my life from that perspective." "If we're always acting out of the history of all the injustices perpetrated against us, instead of the progress we've made, it reinforces societal notions that people with disabilities are victims," he added. Toy is convinced the direst fears of opponents of AB 374 are unrealistic. "I don't believe people will be looking for any tiny loopholes in the law so they can start exterminating us against our will. I don't know how they make the leap to thinking this is going to be the death of us." For him, the core issue in assisted suicide is free choice, which the disability rights movement has held sacred in nearly all other matters. "I'm a great lover of life — a boisterous lover of life, sometimes a bitter lover of life," he said. "If I were dying and in great pain, I'm not sure I'd kill myself. But I might. I just want to have that choice." Toy said concerns about draconian actions by HMOs if assisted suicide became legal are overblown. Many watchdogs exist, he said, "to raise hell if it seems HMOs are encouraging people to die so they can save money." In any case, Toy, a former staff member of the Los Angeles Homecare Workers Union, said, care of disabled people is a thriving part of the healthcare system. After the Oregon law was passed, he said, the availability of hospice care and pain-smothering drugs actually increased in that state. Toy's support of AB 374 drew harsh criticism from other disability rights activists, and he said he was a somewhat reluctant public spokesman for the measure because it divided him from accustomed allies. The emotional nature of the dispute among disability rights advocates has sometimes reached the level of intimidation, Levine said. "One of our witnesses in a wheelchair who testified in favor of the bill one time wouldn't come up the next time because he said other disability rights folks made it so uncomfortable," he said. Some of those who have been in the forefront of opposing such legislation said they could favor medically assisted suicide only if every possible medical, psychiatric and social support service were available to the terminally ill person considering it. "Oncologists and others who do end-of-life care have told me there's a lot of treatable depression in terminally ill people, but it often goes undiagnosed and untreated," Longmore said. "In a given case, I'd also want to know about the pain management the patient is getting. I'd want to know if they are worried about becoming dependent on their families. I'd want to know if they have access to hospice services. "Death with dignity means you get all the services you need and you don't have to worry about burdening your family or other people. People with disabilities understand that more clearly than most people." The Assembly bill, he noted, would have required doctors to give patients information on pain management and hospice care, but wouldn't have provided access to those services. Levine said it was unlikely he would try to revive AB 374 next year. "There will have been nothing that's changed in the Legislature," he said. "The Republicans are still in lockstep at zero votes. It's a shame, because it's a good law. [Opponents] have tried to whip people into a frenzy and make them afraid, and, unfortunately, that's carried the day." For some disability rights advocates, the prospect of not having to go into combat on the issue next year is a relief. "I'm tired of fighting it," Remson Mitchell said. "I'd much rather be working for healthcare reform than battling this, over and over and over again. Killing someone isn't improving anyone's care."
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