Memo for Fran Pavley (SB 128)
Subject: The Disabled Community Opposition to End of Life Option (SB 128) bill
I am writing this essay in response to Senator Pavley’s concern about whether SB 128 will have an impact on the disabled community. [1]
The simple answer is that SB 128 will have no direct negative effect on any member of the community, whether abled or disabled.
SB 128, modeled after Oregon’s “Death with Dignity Act,” is focused on ending pain. “Right-to-death laws” do not impose death on the very sick. Rather, they allow people who face imminent death to do so peacefully and without agony. “Right-to-death” laws are only applicable to those who voluntarily choose them.
SB 128 would allow an adult who meets certain qualifications, and who has been determined by an attending physician to be suffering from a terminal illness, to make a request for medication prescribed pursuant to these provisions for the purpose of ending their life.
The complex answer is that SB 128 and the “right-to-death laws” do have an indirect effect on the disabled community because they reflect society’s prejudice against the handicapped. [2]
Not Dead Yet and other “grass roots” advocacy groups like ADAPT, the National Council on Independent Living, and the Disability Rights Education & Defense Fund (DREF), are against the legalization of physician assisted suicide; because the top five reasons doctors in Oregon prescribed lethal dosage pertained to disability and not terminal status. That is, the fear of future dependency, and not pain, is the primary reason the majority of individuals chose suicide. [3]
A study released in 2013 showed that for the 114 patients who went to a cancer care center in Seattle and asked about information on the process, the main concerns had little to do with physical suffering.
The reasons for participation in our program reflect concern about autonomy, dignity, and functional status rather than disease-related symptoms or depression.
Those words are upsetting for disabled readers, many of whom have experienced derision and prejudice for having different “functional statuses” for their entire lives. In fact, it’s this very concern that drives their opposition to “death with dignity” laws.
The disabled communities reaction to Brittany Maynard’s suicide is instructive. [From Suicide is Awful – Unless You’re Disabled ]
Maynard’s death is tragic to the disability community because it is subtle coercion telling us that we not only have the right, but the duty to die. That’s what its all leading to – these physician assisted suicide laws and the belief that people with disabilities who take their own lives are heroes – it is leading us down the path to the day when we won’t have a choice – we’ll have laws on the books requiring us to die – unless we can stop this notion that us killing ourselves is an act of bravery, selflessness or heroism. To get to that, we have to abolish the worldview that it’s better to be dead than disabled.
Why is it that disabled folks are considered brave for killing ourselves? It all goes back to the societal attitude of better dead than disabled or better dead than to have THAT condition. People see those of us with disabilities as useless and worthless. We are presumed incompetent and our abilities, indeed, everything we do, including the act of living, is called into question. [4]
Value and Respect
“As a culture we are ingrained with idea that disability truly tragic, horrible thing. We can lead quality lives even when having support and assistance with bathing, if we are showing people that they are still valued and respected.” Samantha Crane, director of public policy at the Autistic Self-Advocacy Network.
Value and respect is what a disabled person wants and deserves, but is absent in a society that stigmatizes impairments and extols physical ability.
However, denying someone in unbearable pain, the right to a peaceful death because they admit the humiliation and burden of being disabled is even greater than the pain, will not get the disabled community “value and respect” from the abled-bodied community.
The disabled community opposes “right-to-death laws” because they see them as jeopardizing and undermining their place in society. People with disabilities continue to seek accurate portrayals that present a respectful, positive view of individuals as active participants of society. The right-to-death laws support a view by many that it’s better to be dead than severely handicapped. [5]
Will denying someone in the horrific pain resulting from ALS, an inoperable cancer, Parkinson’s, Alzheimer’s, or multiple sclerosis the right to a peaceful death, change the way society views the handicapped? [6]
We cannot in good conscience allow the reflection of societies view that the disabled are individuals to be pitied, feared or ignored, to be a factor in opposing the death with dignity laws.
The question of society’s prejudice against the handicapped should have absolutely no bearing on whether or not a person who qualifies for a physician assisted suicide is entitled to a peaceful death, because they admit the humiliation is worse than the pain.
Imagine the injustice to a terminally ill patient who is forced to endure their last days in excruciating pain because they will admit the humiliation of wearing a diaper and being incontinent is even worse than the pain.
Should we refuse hundreds of people in unbearable emotional and physical suffering the right to a peaceful death because Stephen Drake is worried that the right-to-die laws send the wrong message: that it’s better to be dead than severely handicapped about being disabled?
Moreover, the alleged slippery slope “that is … once we allow assisted suicide, like Brittany Maynard’s, society will begin to allow various forms of involuntary, active euthanasia against the “unwanted” members of society: “cripples”, the aged, the mentally ill and the marginalized,” is not supported by any data in the states that have had the right to die laws on the books for over 20 years. Click here to read a thorough discrediting of all of the suicide/euthanasia slippery slope arguments put forward by the Care Not Killing Alliance.
Denying an individual the ultimate civil right is not going to get the disabled community the value and respect they deserve, and will never abolish the able-bodied world view that it’s better to be dead than disabled.
Therefore, unless you believe that a handicapped person’s self image is more important, and will be improved, if we force a person to wear a diaper, throw up all over themselves, and suffer excruciating pain and humiliation in their last days on earth, then you must support SB 128.
Breaking News
February 11th in San Francisco Superior Court, The national nonprofit disability rights advocacy group, The Disability Rights Legal Center (DRLC), filed a lawsuit clarifying the ability of mentally competent, terminally ill California patients to obtain aid in dying from their physician. The lawsuit is proof that the real voice of Disabled community is not the “grass roots “ activists organizations, but handicapped people who realize supporting end of life options for everyone is the right thing to do. [7]
Thank you,
Robert Singer
Footnote
[1] The idea with Oregon’s “Death with Dignity Act” isn’t to create pain, it’s to end pain. This is an important distinction in the discussion. For Brittany Maynard, it’s her desire for quality of life over quantity that is inspiring her to make this act. The Los Angeles Times recently wrote this: “Right-to-death laws do not impose death on the very sick. Rather, they allow people who face imminent death to do so peacefully and without agony.” This “right-to-death” laws are ONLY applicable to those who voluntarily choose them.
As it stands now, the idea of “physician assisted suicide” in Oregon’s “Death with Dignity Act” is both active and voluntary ONLY for those who are deemed terminally ill by the medical community.
[2] Survey Shows Most Americans Feel Awkward Around The Disabled
September 11, 1991|By ALAN CULLISON; Courant Staff Writer
[3] Janet Good of the Hemlock Society agrees: “Pain is not the main reason we want to die. It’s the indignity. It’s the inability to get out of bed or get to the toilet, let alone drive a car or shop without another’s help.” A Honolulu attorney and member of the Governor’s Blue Ribbon Committee on Death with Dignity said on KHET in 1996 that he was not afraid of dying, but he was afraid of “being in diapers and being dependent on others.”
[5] When able-bodied people become disabled, they may express the wish to die, but perhaps only because they have no concept of a happy, fulfilled life with a disability. And, the thinking goes, they have no concept of this because disabled people in America are either pitied or invisible. And so, when a recently-disabled person chooses physician-assisted death, it sends a lot of messages: “I never saw you,” “my life isn’t worth living,” and “neither is yours.”
[4] We humans tend to fear and hate what we don’t understand, and disability is no exception. It’s why our community is treated the way it is. Sure, many people will say that they support us, but I look at how we are treated by those who have the real power – those who make the laws, rules, policies and systems that govern our lives. I notice that laws designed to protect our civil rights are weak and ineffective, at best. I notice how difficult it is for us to get the health care, particularly the mental health care that we need, especially if we have severe disabilities. I notice how people grumble about how much money we cost, yet, will do everything in their power to keep us out of the workplace.
[6] The Death With Dignity Act Annual Reports list the top five reasons Oregon doctors issue lethal prescriptions are the “loss of autonomy” (89.9%), “less able to engage in activities” (87.4%), “loss of dignity” (83.8%), “loss of control of bodily functions” (58.7%) and “feelings of being a burden” (38.3%).
People who want to die usually have treatable depression and/or need better palliative care;
Pressures to cut health care costs in the current fiscal climate make this the wrong time to add doctor prescribed suicide to the options;
Abuse of elders and people with disabilities is a growing but often undetected problem, making coercion virtually impossible to identify or prevent.
[7] The plaintiffs, consisting of patients and doctors, are asking the court to declare that physicians who provide a prescription for medication to a mentally competent terminally ill patient should not be subject to criminal prosecution under existing California law.
The lawsuit argues that the choice of such a dying patient for a peaceful death is not “suicide,” nor is the physician assisting such a patient in “committing suicide.” Additionally, the case argues that patients facing the end of their lives have a right under the California State Constitution to make autonomous decisions about their bodies and how they will die.