11 May Why disability rights advocates oppose assisted suicide (Commentary) | syracuse.com
By Diane Coleman
People are often surprised to learn that all of the major national disability rights groups that have taken a position on assisted suicide oppose bills to legalize it. It may seem counterintuitive that the National Council on Independent Living, the Disability Rights Education and Defense Fund and similar organizations that fight for increased rights for people with disabilities would oppose a public policy often characterized as a new right.
Simply put, assisted suicide sets up a double standard, with suicide prevention for some and suicide assistance for others, depending on their health or disability. If such distinctions were based on race or ethnicity, we’d call it bigotry. The dangers of mistake, coercion and abuse it poses to old, ill and disabled people are rooted in a profound and still largely unacknowledged devaluation of our lives.
Those of us with serious disabilities have good reasons to be skeptical about the mantra of choice being used to market assisted suicide in our profit-driven health care system. Anyone could ask for assisted suicide, but the law gives doctors the authority to decide who is eligible.
Doctors used to exercise near-total control over the lives of people like me with significant disabilities, discouraging parents from raising such children at home, sentencing us to institutions, and imposing their own ideas about what medical procedures would improve our lives.
Disability groups started paying attention to the problem of doctors making life and death determinations in the 1980s in high-profile court cases involving the right to refuse treatment. One involved Elizabeth Bouvia, a 26-year-old woman with cerebral palsy who had a miscarriage and marriage breakup and wanted a hospital to make her comfortable while she starved herself to death. Other cases involved men on ventilators stuck in nursing facilities like Larry McAfee, who wanted the right to live in apartments or real homes, or else “pull the plug.” The doctors, courts, media and public all viewed these severely disabled individuals as the equivalent of terminally ill. They did not get suicide prevention equal to that offered nondisabled people, nor the right to live in real homes instead of facilities, but courts uniformly granted them a “right to die.”
Then the 1990s brought Dr. Jack Kevorkian, conducting assisted suicides using lethal drugs, with two thirds of his body count being people who were not terminally ill. As before, the difference between being disabled and dying was not recognized or considered relevant. As before, the difficulties disabled individuals faced in living – community access, getting a job, getting married – were not considered, or worse, accepted as rationales for ending their lives.
The 17 years of reports on medically assisted suicides from the Oregon department of health offer a clear window into motivations behind hastened deaths. The top five reasons doctors give for their patients’ suicides are not pain or fear of future pain, but psychological issues that are all-too-familiar to the disability community: “burden on others” (40 percent), “loss of autonomy” (91 percent) or “loss of dignity” (79 percent).
We don’t know if or to what extent the doctors knew about consumer-controlled personal care services, which could address these concerns. The Oregon law doesn’t require doctors to report whether such concerns were addressed or whether home care was provided to improve the patient’s quality of life. But disability advocates know that being in charge of one’s home care makes a critical difference.
Disability advocacy groups also worry about the increasing prevalence of abuse of disabled elders, with federal authorities estimating that one in 10 elders is abused, mainly by family and caregivers. Against this backdrop, so-called safeguards in assisted suicide bills are hollow. An heir or abusive caregiver can suggest assisted suicide to an ill person, sign as witness to the request, and pick up the drugs. No independent witness is required at the death and in half of Oregon’s cases no such witness was present. So how would anyone know if the lethal dose was self-administered, or even if the person consented at the time? Oregon’s law looks the other way, with no evidence of what happened at the end.
Disability rights advocates have become a leading voice in the public policy debate over assisted suicide. We urge state lawmakers to look behind the public relations images of assisted suicide and consider the dangers to the many elders, ill and disabled people who are not safe from mistake, coercion and abuse.