Why Disability Rights Groups Oppose Assisted Suicide
Diane Coleman is president and CEO of Not Dead Yet, a national disability organization that opposes legalization of assisted suicide. Not Dead Yet is based in Rochester.
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” (42 percent), “loss of autonomy” (91 percent) or “loss of dignity” (77 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.
Why Disabled People Like Me Fear Medically Assisted Suicide
Stephanie Woodward is a graduate of Syracuse University College of Law and is the Director of Advocacy at the Center for Disability Rights in Rochester. This piece was originally published in the Syracuse Post-Standard.
By Stephanie Woodward
Having been born with a physical disability, I am all too familiar with the overwhelming number of people who feel that decisions should be made for me, not by me. I know the tactics used to coerce disabled people into doing what someone else thinks is best because they’ve been used on me. I am well aware of the “ableist” notions that society holds – that having a disability is a tragedy, that we’re a waste of resources and a burden on society, and that we’re “brave” to live with our disabilities (which essentially means that most people would rather die than be “brave” and live with a disability like me).
We’re often regarded as incapable of making our own decisions and unworthy of respect. However, when one disabled person announces they want to die, they’re lauded in the press and on social media. Sara Myers, for example, has Lou Gehrig’s disease and has received a slew of media attention for wanting assisted suicide because she began to experience disability. Media focused on Myers’s use of a wheelchair and her need for assistance in showering and toileting to demonstrate why assisted suicide should be available to her. For full disclosure, I use a wheelchair and have needed assistance with both showering and toileting in my life, and I expect I’ll need more assistance as I age. I take it very personally when media and society lists these as valid reasons to want to die.
With all of these negative stereotypes and stigmas against disabled people, combined with the praise a disabled person receives when they announce that they want to die, nothing scares me more than the legalization of assisted suicide.(David M. Rubin column, Oct. 30.)
Legalized assisted suicide has a disproportionate impact on disabled people. While everyone else receives suicide prevention, people with disabilities and certain illnesses and old people will receive a fast pass because our lives are viewed as less worthy.
Current legislation proposed in New York to legalize assisted suicide not only has no realistic way of protecting from mistake, coercion or abuse, but also lists no reporting requirements. This means that any doctor could prescribe a lethal dose and any person could administer that dose to kill a person, with medical confidentiality preventing any oversight. No independent witness is required during the death of an individual, so there’s no way to ensure that the individual administered the lethal dose himself or herself. In a world where abuse of people with disabilities and seniors is rampant, this alone is cause for concern.
For example, an adult child of an ill 80-year-old woman could accompany her mother to the doctor to obtain the lethal dose, and then administer it without her mother’s consent.
Situations like this have already happened.
Kate Cheney, an 85-year-old woman with early dementia, was brought to her doctor by her daughter to obtain a prescription for the lethal dose in Oregon where assisted suicide is legal. The doctor refused to write the prescription. Unfortunately, that did not prevent Ms. Cheney’s death. Instead, Ms. Cheney’s managed care provider found a different doctor to prescribe the lethal dose. This second doctor had Ms. Cheney undergo a psychiatric exam and found that Ms. Cheney lacked the capacity to make this decision, so the lethal dose was, again, not prescribed. Cheney’s daughter became very angry and demanded that her mother undergo another evaluation. This psychologist deemed Cheney competent, but noted that Ms. Cheney’s “choices may be influenced by her family’s wishes and her daughter, Erika, may be somewhat coercive.” Soon thereafter Ms. Cheney took the lethal dose and died.
My concerns about assisted death are shared widely throughout the disability community. In fact, every major disability rights organization that has taken a stance on assisted suicide opposes its legalization. Our concerns extend further than abuse.
As I mentioned, disabled people frequently encounter members of society who believe that they know what is best for us. The medical community is one of the biggest offenders. The medical community has historically encouraged parents not to have or raise their disabled children, has prevented disabled people from reproducing by forcibly sterilizing us without our consent, and has forced us into nursing facilities and other institutions simply because of our disabilities. To have this community in charge of deciding who can access assisted suicide is incredibly troubling.
In recent years, plenty of medical professionals have deemed that assisted suicide is appropriate solely if a person is disabled. For example, according to the New England Journal of Medicine, most of Dr. Jack Kevorkian’s victims were not terminally ill, they simply had disabilities. Furthermore, the top reasons given for wanting assisted suicide are not pain or fear of future pain, but feeling like a “burden on others,” experiencing a “loss of autonomy,” or a “loss of dignity.” These factors are all disability related, as disabled people are often made to feel like burdens because we need assistance, which also contributes to the perceived loss of autonomy and dignity.
I, along with my allies in the disability community, urge all New Yorkers to understand that assisted suicide is not a “right” to be glorified, but a double standard that is lethal to communities that are already marginalized, oppressed and abused. We deserve the same suicide prevention that nondisabled people enjoy, because despite the widespread belief otherwise, I assure you, our lives are worth living.