[Editor’s Note: NDY’s letter to Governor Brown enclosed a 1976 image of the Governor, during his previous stint as Governor of California, appointing Ed Roberts, considered the “father of independent living”, to head up the California rehabilitation agency.]
September 21, 2015
Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814
Dear Governor Brown:
Even though I was born with a disability, I didn’t become part of the disability rights movement until my early 30’s, when I joined the board of directors of the Westside Center for Independent Living in Los Angeles. One of the first stories I heard was about Ed Roberts and how you appointed him to head up the state rehabilitation agency. Your groundbreaking and courageous action in making that appointment flew in the face of common disability stereotypes and began a transformation that affected the whole country.
I met Ed several times over the years. As I’m sure you know, he went on to lead the World Institute on Disability, along with Judy Heumann. What you may not know is that the World Institute on Disability came to oppose the legalization of assisted suicide. The same is true of every other national disability organization that has taken a position on the assisted suicide issue.
It’s frustrating to see the issue portrayed as a progressive social cause. By the time disability rights activists entered the fray, well-funded assisted suicide proponents had already framed the debate for the media. Nineteen years ago, urged by friends and colleagues with whom I had struggled to be heard on this issue, I founded Not Dead Yet. We’re a national, grassroots disability group with activists in most U.S. states, including California, who oppose legalization of assisted suicide. We also promote policies that seek to ensure that the withholding and withdrawal of life sustaining healthcare is truly informed and voluntary, not the result of devaluation of the lives of old, ill and disabled people.
Initially, Not Dead Yet’s opponents told the media that we should be dismissed as mere “puppets” of the religious right. As our voices grew and that strategy worked less and less, we were dismissed as having unreasonable fears, unsupported by the facts. But the reality is that we live on the front lines of a health care system, with long term health issues that give us a better informed perspective on the weaknesses of that system and the ways that it too often fails to meet its stated goals.
On behalf of Not Dead Yet, and for the sake of all across this nation who may be impacted by public policy in a state as important as California, I’m writing to urge you to veto AB2X 15, the assisted suicide bill.
Many of us have spent a lifetime advocating for the rights of disabled people, young and old, to control our own lives and not have our choices dictated by doctors and other professionals. So you might wonder why we oppose a bill that is widely portrayed as giving people choice and control over their own death.
But who actually has choice and control under assisted suicide laws? Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible. Doctors make the determination that a person is terminally ill and likely to die in six months, and that the request for assisted suicide is voluntary and informed. The advertised “safeguards” in assisted suicide bills are entirely in the hands of doctors, from the diagnosis, prognosis, disclosures, request form, decision whether to refer for psychological assessment, prescription and report after death.
Who are the doctors who are giving lethal prescriptions? The public image is that one’s own doctor, someone who knows you and has taken care of you throughout your illness, will be the one who assists your suicide. But in Oregon, the majority of assisted suicides involve a doctor referred by Compassion and Choices (C&C). [See references under “Doctor Shopping” section of Why Assisted Suicide Must Not Be Legalized.] The state does not interview doctors who said “no” to the person’s request, so we don’t know why so many people had to go shopping at C&C.
The prescribing doctor’s also fill out a final report after the death, among other things stating the reasons for the request for assisted suicide. Among the top five reasons given are feelings of being a “burden on others” (40%) or feeling a “loss of autonomy” (92%) or “loss of dignity” (79%). These are not about pain from a terminal disease, but are psychological and social issues that cry out for meaningful supports and genuine care. Yet the assisted suicide law does not even require disclosures about consumer controlled home care options to address feelings of loss of autonomy or being a burden, much less require that those services be provided.
The bill specifically provides that depression is not a barrier to getting a lethal prescription. All that is required is that the depression is viewed as not impairing the person’s judgment, a subjective and speculative assessment at best. Psychiatrists and psychologists are not immune from prevailing social biases against people whose illnesses make them dependent on others for basic physical care. In some cases, they are just as likely as anyone to say, “If I were in your shoes, I might want to die,” and render an opinion that treatment for depression is not necessary, paving the way for a lethal solution.
Still, some might say, didn’t the person initiate the request for assisted suicide? Didn’t they have to self-administer the lethal dose?
I understand that the media has been flooded with images of Brittany Maynard, who held the lethal drugs in her hand, and appeared to be in full control with a loving family supporting her choice to die in the bedroom we saw on TV that she shared with her husband.
But most people who have been reported to use assisted suicide in Oregon do not resemble Ms. Maynard. Most are age 65-84, in a society where one in ten elders are abused according to federal figures. The abusers are usually family members. About half the people reported to use assisted suicide in Oregon did not have a health provider present at the time of death. With no independent witness required, there is no evidence that they self-administered the lethal drugs, or even that they consented at the time of death. These bills have to be considered in light of the sad reality that not all seriously ill people have loving family. Assisted suicide laws grant blanket immunity and effectively foreclose investigation of wrongdoing.
Moreover, as a person who has been disabled all of my life, I’ve learned that some of the health care that I’ve needed will not be covered by the available forms of insurance, because it won’t cure me and it “costs too much”, things that would have helped me maintain more physical function longer or reduced the help I needed from family. This is a common experience in the disability community. The idea of mixing a cost-cutting “treatment” such as assisted suicide into a cost-conscious health care system that’s poorly designed to meet a seriously ill patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill. It doesn’t increase my comfort to know that the California Medical Association has gone neutral. When push comes to shove over the health care needs of a disabled Californian, whose corner will the doctor be in? These realities undermine the image of “choice” that is being sold by assisted suicide advocates.
Finally, although I’ve been disabled all my life, the majority of people with disabilities acquire their disabilities through traumatic injury or a medical event or illness, such as a stroke or multiple sclerosis. The practical losses associated with acquiring a disability are multiplied exponentially by the crushing social oppression and internalized stigma of disability. In the early and uncertain phase of a disabling event, many of our activists, friends and colleagues, have been viewed as potentially terminal. The impact of a public policy of assisted suicide that, like Oregon, accepts psycho-social reactions to disability as justification for medically assisted suicide, poses perhaps the gravest threat to the tens of thousands of persons who are newly disabled each year.
There are many more reasons that an immunity statute for assisted suicide is bad public policy, too many to detail in one letter. But we hope that when you examine how this assisted suicide bill, that was rammed through a special session of the legislature, affects the vast majority of us, you will see that the dangers to the many far outweigh any alleged benefits to a few. Please veto AB2X 15.
Diane Coleman, JD