NDY Press Release: NDY Files Brief In New Mexico Assisted Suicide Case

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[Editor’s Note:  The October 1, 2015 press release below is also available online in PDF format through PRWeb here.  The friend-of-the-court brief described in the release can be read here.]

Not Dead Yet and Five Other National Disability Groups File Friend of the Court Brief in New Mexico Supreme Court in Assisted Suicide Case

On September 30, 2015, Not Dead Yet and five other national disability rights organizations filed a friend-of-the-court in the New Mexico Supreme Court in support of the State Attorney General’s request that the state’s high court uphold a Court of Appeals ruling that physician assisted suicide is not a right under the state constitution. Joining in the Not Dead Yet brief are ADAPT, Autistic Self Advocacy Network, the Disability Rights Education & Defense Fund, the National Council on Independent Living and United Spinal, collectively referred to as the “Disability Amici.”

The case is Morris v. Brandenburg (S. Ct. No. 35,478) and the disability brief supports the Court of Appeals ruling, which was issued August 11, 2015 (Court of Appeals Case No. 33,630), and the State Attorney General, who is seeking to uphold the appellate ruling.

According to the brief filed in the New Mexico Supreme Court, “State-sanctioned assisted suicide degrades the value and worth of people with disabilities and violates the antidiscrimination rights, protections and mandates of the Americans with Disabilities Act, 42 U.S.C. § 12101, et seq.”

“Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s a problem,” said Not Dead Yet’s president and CEO, Diane Coleman.

The dissent in the Court of Appeals decision that is the subject of the appeal to the state Supreme Court noted that the State Attorney General did not call witnesses or submit evidence of alleged any abuses in Oregon and Washington state where assisted suicide is legal. In their Supreme Court brief, the Disability Amici urge that, if the Court is not prepared to simply uphold the Court of Appeals at this stage, the Court should remand the case and allow one or more of the disability groups to assist the Attorney General or intervene as defendants in the case to ensure a full hearing of facts that were allegedly omitted in the original trial court.

A free subscription to the Not Dead Yet blog is available online.

Autistic Self Advocacy Network Sends Powerful Letter To Governor Jerry Brown

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[Editor’s Note:  The California assisted suicide bill hit Governor Brown’s desk last Friday, which means that he has until Wednesday, October 7th to decide whether to veto it.  Please add your message to the many others who are urging him to veto this discriminatory and dangerous legislation.  For information on how to send a letter, online or twitter message, go to John Kelly’s blog here.]

ASAN

Autistic Self Advocacy Network

September 25, 2015

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Subject: – Veto AB 2X 15

I write as Director of Public Policy of the Autistic Self Advocacy Network (ASAN) to urge the Governor to veto AB 2X 15, which would permit physician-assisted suicide in California.

ASAN believes that physician-assisted suicide legislation like AB 2X 15 discriminates against people who are aging, ill, or have disabilities. During the course of its advocacy for people with disabilities, we repeatedly encounter attitudes that life with a disability – not only developmental disability but also disability caused by age or illness – is “undignified” and that people with disabilities cannot live happy lives at home among their loved ones.

The belief that it is better to die than to depend on others for assistance is central to arguments in favor of so-called “death with dignity.” Supporters frequently focus on the “indignity” of needing help to eat, move, or take medications. In Oregon, which passed nearly identical legislation, 93% of those who died from physician-assisted suicide in 2013 cited “loss of autonomy,” or disability, as a motivation. Less than 28% cited concerns about pain control.1

This harmful mindset perpetuates stigma, isolation, and depression among people with disabilities and can create significant or even fatal barriers to accessing health care and needed services. Medical discrimination against people with disabilities is unfortunately widespread.

Moreover, although AB 2X 15 claims to limit its scope to people who have a terminal illness, it has the potential to affect nearly everyone who has a disability or a significant illness (including age-related illnesses). Doctors typically cannot make six-month prognoses with an acceptable level of certainty. The disability community is full of people who have outlived “six-month” prognoses by decades. There is every reason to believe that legalized physician-assisted suicide in California would shorten the lives of many people by months, years, or decades.

People facing life-threatening diagnoses – especially diagnoses expected to cause some level of disability as part of the diagnoses’ natural progression – are a highly vulnerable population. It is extremely common for people to feel depressed in the face of progressive disability. Moreover, people with disabilities, including disabilities resulting from age or illness, are also at heightened risk of abuse, isolation, and exploitation.

Instead of addressing these risks, legislation like AB 2X 15 actively exacerbates them. Neither the Oregon law nor AB 2X 15 requires that individuals be provided either accurate information on pain management, nor long-term supports or referrals to services such as peer counseling and mental health screening. These types of information and referral services are the gold standard in the disability community. In 2013, only two of the 71 Oregonians who died from physician- assisted suicide were even referred for formal psychiatric or psychological evaluation. It is unthinkable that a doctor would respond similarly to patients without disabilities expressing suicidal feelings in the face of serious life stress.

In addition, neither the Oregon law nor AB 2X 15 requires any sort of safeguard to ensure that the lethal medications are taken voluntarily after they were prescribed. Given the heightened risk of abuse and neglect among people who rely on others for help with day-to-day tasks, this is simply unacceptable.

People with significant disabilities, including people with life-threatening diagnoses, should not have to die in order to have dignity. Instead, they need access to the things that help them make the most of their remaining time: quality palliative care, respectful in-home supports, counseling, and assistive technology to maximize autonomy. Let’s focus on aid in living, not “aid in dying.”

Samantha Crane
Director of Public Policy
Autistic Self Advocacy Network

1http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents /year16.pdf.

NDY Advocate Lillibeth Navarro Speaks at Sacramento CA Rally for Veto

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A diverse group of advocates led by people with disabilities held a rally at the State Capitol in Sacramento, California on September 24th to urge Governor Jerry Brown to veto the assisted suicide bill rammed through a special session of the state legislature two weeks ago.

Sacramento Rally Photo

[Photo of people with signs gathered near the stage of the rally.]

Among the disability leaders speaking at the rally was Lillibeth Navarro, a long time advocate with Not Dead Yet who is also the Founder and Executive Director of Communities Actively Living Independent & Free (CALIF).  Lillibeth discussed cost-cutting pressures on elders and people with disabilities to forego life sustaining medical care.  These pressures too often come from doctors, who would be the gatekeepers of assisted suicide.

Lillibeth and Marilyn 1 9-24-15 onstage

[Photo of Lillibeth Navarro speaking at rally with sign with the words “Doctor Assisted Suicide” in a red circle with a slash through it, with Marilyn Golden with a sign with the words “assisted suicide: Rx for Abuse” and a sign language interpreter also onstage.]

The full text of Lillibeth Navarro’s remarks are below.

My name is Lillibeth Navarro, a polio survivor dependent on a motorized wheelchair for mobility. I have a ventilator for breathing at night and a personal care assistant helps me with chores of daily living. I take pains to describe these details because I’m aware that I stand in line for the health care cost chopping board that could, with one policy decision, cut me off from the life giving supports I need as a person with a disability. Yet I work full time as a disability rights advocate and I manage an independent living center in Downtown Los Angeles.

With my work in the disability community, I see this frightening trend. Last week, a former co-worker called me distressed because the doctors wanted his grandmother brought to hospice care and to just be given sleeping medication and less food. They said her Alzheimer’s Disease is far gone affecting her ability to manage some basic bodily functions. Up to that point, the family was caring for their grandmom—she would still ride with them in the car for outings and sit with them watching TV. When they noticed that their Grandmom was getting slower and slower, they brought her to the doctor, hoping to get her some medication to improve her condition. They were shocked at the doctor’s suggestion of hospice care. Rejecting the prospect of leaving the Grandmom to the hospice nurses, the family decided to continue caring for her as they have been doing.

Two years ago, a school teacher brought me the case of a student with disability (specifically a speech impairment) distraught because she was in a fight with her brother for the life of their mother battling with cancer. The brother wanted their mother euthanized but his sister was opposing it because she was closer to her mom who had expressed the desire to live even just a little more. The hospital ethics committee forbade us from helping the daughter fight for the mother and was booted out of the ethics review committee meeting and entertained only the brother. Clearly the institutional bias was with the more able bodied sibling believed more competent to decide on the mother’s fate.

In an atmosphere like this, not even the tightest written safeguards purportedly included in the AB 15 Assisted Suicide bill will protect people with disabilities. What is most frightening of all is that the bill (and other similar bills) creates the most precipitious slippery slope toward the silent extermination of our people, the most vulnerable of them being people with terminal illnesses, most of whom are at the mercy of their HMOs, with no financial resources and physical energy to fight for their lives.

As a person with a disability who has survived polio and cancer, I have watched in alarm how quickly the atmosphere has changed over the years in the attitudes of the medical community about our treatment. The presumption of life has been eroded and replaced with a disturbing presumption of so-called “choice”, often interpreted to be the withdrawal of even the most routine life-sustaining food and water. Five years ago, I was asked by a physician if I would like a tracheotomy done on me if suddenly I came down with pneumonia and could not breathe! The episode alarmed me. Why was it even a question for him? Why do I first have to declare it on paper that I want to live if this doctor has sworn to the Hippocratic oath?

I find it quite outrageous that the terms “assisted suicide” are equated only with people with terminal illnesses. People without disabilities are not given help to commit suicide. They are given assistance of a different sort—they are encouraged to live by being put on suicide watch because their lives are perceived as worth saving. Hundreds of suicide hotlines are available in the community to coach them to rethink life toward possibilities and hope. On the other hand, people with disabilities are encouraged and assisted to do suicide and AB 15 is proposed to exonerate those who assist them to do it.

Because people with polio were not being “mercifully” killed in the 40s and 50s, because Vietnam veterans were coming home from the war and needed to be assisted to live, scientists and inventors have come up with with the most amazing gadgets that allow us today to move around in our motorized wheelchairs, to drive around with vehicles with hand-controls, therapies that allow us to work, have families, and participate fully in society.

Governor Brown, WE NEED YOUR VETO on this bill !

NDY’s Letter to Governor Jerry Brown Urging Veto of Assisted Suicide Bill

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[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.

Sincerely,

Diane Coleman, JD
President/CEO

Disability Activist Jean Stewart’s Letter to Governor Brown

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[Editor’s Note:  Jean Stewart is a long time disability activist, one of the earliest members of ADAPT and other social justice efforts that include civil disobedience, and author of the acclaimed book, The Body’s Memory.  She is one of those who, over two decades ago, urged the formation of an organization like Not Dead Yet.]

Dear Governor Brown,

I am a 68-year-old power wheelchair user and a resident of El Sobrante. I urge you to veto AB 2X-15, which I strongly oppose. I believe my life, and the lives of my disabled and elderly friends, will be directly threatened if AB 2X-15 becomes law. Physician assisted suicide, like the death penalty, is final and irreversible. When abuses are committed or mistakes are made, the dead person cannot be brought back.

The lives of people with disabilities are historically undervalued by American society. All too often, family members, caregivers, the medical establishment, and the courts regard us as a burden on society; this attitude becomes internalized, leading many of us to choose physician assisted suicide when, in our hearts, we would prefer to go on living with our disabilities. In Oregon, where assisted suicide is legal, 40% of people who died by assisted suicide reported feeling like a burden on their families and caregivers as a reason for requesting lethal drugs, according to the Oregon Public Health Division’s records. (By contrast, only 24% reported inadequate pain control, or concern about it, as a reason.) An overwhelming 91% cited “losing autonomy” as a reason. Those of us living productively with our “loss of autonomy” within a pervasively ableist society are inclined to translate this reason as fear of disability.

Passage of AB 2X-15 would provide society with legal cover to dispose of us. If we care about true justice, we must strive to provide elderly and disabled people with the supports necessary to live full, rich lives with comfort, pride, and, yes, DIGNITY. Such supports include affordable, accessible housing (NOT institutionalization in nursing homes), home care, and appropriate medical care, including comprehensive, compassionate palliative care.

I would remind you that a treatable condition or illness can quickly morph into terminal when the treatment is denied by one’s insurer; as you know, it’s commonplace for insurers to deny treatment, particularly to poor people—and disabled folks are statistically among the poorest populations in the country—and people of color, who are demographically underinsured and less skilled at navigating the bureaucratic jungle of red tape required to challenge an insurer’s decision. A number of cases in Oregon involve individuals who chose suicide when their insurers denied them treatment.

The “safeguards” provided in AB 2X-15 provide no guarantee against abuse. In Oregon, “doctor-shopping” in search of a physician who will support assisted suicide has become commonplace. Further, the so-called “safeguards” do nothing to prevent abusive family members or caregivers from steering an individual toward assisted suicide. Nor do the safeguards prevent economic pressures from driving an individual to “choose” lethal drugs, as has been documented in a number of Oregon cases.

There is nothing reasonable, fair, or compassionate in the rush to legalize physician-assisted suicide. This “choice” is not a choice.

Sincerely yours,

Jean Stewart

El Sobrante, CA