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

John Kelly: Revised How-To Guide for Urging Veto if CA Assisted Suicide Bill; Talking Points

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[Editor’s Note: This is an urgent update of John Kelly’s September 13th blog on ways to reach California Governor Jerry Brown to urge him to veto the assisted suicide bill.  It’s a bill that failed in the regular legislative session but was revived and rammed through a special session that was convened to address the Medicaid budget.  That juxtaposition is far from comforting to the disability community.]

For the sake of California and the country, Gov. Jerry Brown of California must veto assisted suicide bill AB2x 15, recently passed by the legislature. Governor Brown must veto a bill that tells vulnerable people that suicide is good for us. He must stop a bill that makes our terrible social inequality even worse. The legislature wouldn’t contribute more to Medi-Cal, but will fully fund the only medical “choice” less well-to-do people and people of color never asked for.

Suicide for certain people must never be declared a social benefit!

Now we have the chance to win an historic victory for social justice and disability rights.

If this bill becomes law, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.– Marilyn Golden, Disability Rights Education & Defense Fund (DREDF)

LETTERS, EMAILS, CALLS FOR A VETO

Your letter, your email, your calls matter. Every time the governor hears from us moves us closer to victory. Contact the governor for yourself, and for every other vulnerable person in California and the country. We are all in this together – older people, depressed people, poorer people, abused people, misdiagnosed people, people of color, non-English speakers, native people, and anyone considered “less than fully human.”

MAILING + FAX ADDRESS

Handwritten or typed letters and postcards.

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

FAX: 916-558-3160

Scroll down to the “Talking Points” for arguments the other side can’t answer!

EMAIL GOV JERRY BROWN New Instructions

Go online to the contact form.

At “Purpose of communication,” click “Have Comment.”

At “Please Choose Your Subject”, click on the down arrow at the right, and scroll all the way to the bottom. Click on the last topic. “X2AB00015\End of Life.”

(It probably doesn’t matter whether you check the box for wanting a reply. We probably won’t hear anything definite until the governor’s announcement.)

At the next page at the top, click on “CON” to show you are against the assisted suicide bill. If you don’t see the choice at the top, go back and make sure that you clicked on “Have Comment”.

Scroll down for talking points

TELEPHONE: 916-445-2841

It can be as simple as telling the aide you oppose assisted suicide. Or make a sentence or two out of it. For example, I will say, I am a disabled person who’s been told “better dead than disabled” for 30 years. Governor Brown must veto the assisted suicide bill.

Proven arguments are listed below. For example, I oppose assisted suicide because of all the innocent people that will lose their lives through mistakes and abuse.

TWITTER – Hashtag #VetoAssistedSuicide.

Governor Jerry Brown’s twitter address is @JerryBrownGOV .

Please ask him to #VetoAssistedSuicide . It’s a very clear, easily understood, hashtag.

If you begin your Tweet with an “@”, remember to put a “DOT” first. Here is a sample:

.@JerryBrownGOV Honor #SuicidePreventionMonth #VetoAssistedSuicide @autselfadvocacy @NoSuicideCA @LATimes http://video.foxbusiness.com/v/4486478956001/california-passes-right-to-die-bill/?#sp=show-clips @DREDF 

Here is the Tweet as it looks on someone’s twitter feed. That really long hyperlink? Twitter automatically reduced that to 16 characters.

Now watch the video! Social justice health advocate Ken Barnes insists on making life-saving points, politely.

To find some good tweets, go to twitter addresses and hashtags like

#VetoAssistedSuicide #AssistedSuicide #AlwaysDignified @2ndThoughtsCT @NotDeadYetUSA @JohnBrianKelly
@NoSuicideCA @DREDF @autselfadvocacy @NCILAdvocacy #2ndThoughts   #BlanketImmunity

and individual advocates you will find tweeting these messages.

Talking Points

1. Insurance Denial Poorer people, disabled people, and people of color have trouble getting ANY care. It’s no “choice” when your insurer denies you treatment but offers you suicide. Assisted suicide will always be the cheapest treatment. Your assisted suicide saves insurers money!

2. Abuse Elder abuse and abuse of people with disabilities are epidemic. Nothing in the law can stop an heir or abusive caregiver from steering someone towards assisted suicide, witnessing the request, picking up the lethal dose, and even administering the drug — no witnesses are required at the death, so who would know? The Oregon law has invited every sort of abuse.

3. Mistakes: Misdiagnosis that you are “terminal” can be deadly. People alive today are grateful that assisted suicide wasn’t available when they were diagnosed. People alive today are grateful they found a doctor willing to treat their illness.

For more Talking Points and other information from John Kelly, go to Second Thoughts.

ASAN Responds to GOP Debate on Vaccines: Not Better Off Dead Than Disabled

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[Editor’s Note:  This awesomely strong and timely Autistic Self Advocacy Network’s response to the GOP debate remarks on autism and vaccines is reprinted with permission.]

ASAN Statement on GOP Primary Debate Comments on Autism and Vaccination

Despite a wealth of scientific evidence debunking any link between autism and vaccinations, tonight’s Republican primary debate featured prominent commentary from a leading candidate repeating inaccurate information suggesting a link. The Autistic Self Advocacy Network is disappointed that long after the science has spoken, politicians and pundits continue to focus on causation, distracting from the real and pressing issues facing the autistic community. Politicians continue to talk about an autism epidemic – despite the fact that the science suggests that autism has always existed at its current rate within the general population. Autistic people are not new – and neither are our unmet needs. Unfortunately, those who focus on causation choose to push those needs aside.

Federal investment in autism research focuses overwhelmingly on basic research around causation and biology, with almost no funding going towards research on adults or services across the lifespan. The lack of focus on the key issues facing autistic people and our families – employment, housing, healthcare and rights protection – is shameful. Instead, too many commentators rely on pseudo-scientific causation myths and abdicate their responsibility to work towards improving the lives of Autistic Americans and our families.

While no link exists between autism and vaccines, of greater concern is the willingness of those who promote this theory to suggest that exposing children to deadly diseases would be a better outcome than an autistic child. Vaccinations do not cause autism – but the use of autism as a means of scaring parents from safeguarding their children from life-threatening illness demonstrates the depths of prejudice and fear that still surrounds our disability. Autism is not caused by vaccines – and Autistic Americans deserve better than a political rhetoric that suggests that we would be better off dead than disabled.

John Kelly: Urging California Governor Brown to Veto! Veto! Veto!

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FOR AN IMPORTANT UPDATE OF THIS POST, GO JOHN KELLY’S SEPT. 19 BLOG!

[Editor’s note:  By now, most of you know that assisted suicide proponents ramrodded a bill through the California special session convened to work on the state’s Medicaid budget, after the bill was killed in the regular session.  Too many legislators chose to ignore the documented record of abuses under the virtually identical Oregon and Washington laws.  John Kelly has put together the information on what you can do to stop this dangerous bill before it’s too late.  And if you’re in need of inspiration and hope, look at what the disability community did to help defeat assisted suicide by a vote of 330 to 118 in the UK, in A Matter of Life and Death.]

Veto!  Veto!  Veto!

It’s time for Gov. Jerry Brown of California to veto assisted suicide bill AB2x 15, which passed the State Senate Friday, September 11. Governor Brown must veto a bill that tells old, ill, and disabled people that suicide is good for us. He must stop a bill that plays on our huge social inequalities to fully fund the only medical “choice” less well-to-do people and people of color never asked for. Suicide for certain people must never be declared a social benefit!

Now we have the chance to win an historic victory for social justice and disability rights.

So Many Ways We Can Help Stop Assisted Suicide

1. Get out the Word. Talk to, write to, message, Facebook every like-minded person you know, ESPECIALLY CALIFORNIA RESIDENTS, and ask them to do likewise.

2. Telephone Governor Jerry Brown’s office at 916-445-2841.

Say something short like “For old, ill, and disabled people, please veto the assisted suicide bill.” Or say “For misdiagnosed people.” Or people without insurance. Suicidal people. Young bullied people. People of color. People abused by family and caregivers. Intellectually disabled people. Autistic people. Native people. Immigrants. Newly injured people.

3. Email Governor Jerry Brown in Easy-to-Follow Steps

Go online to the contact form.

At “Purpose of communication,” click “Need Help.”

At “PLEASE CHOOSE YOUR SUBJECT” click on “Legislation Issues/Concerns.”

Click on the box for wanting a reply to your email.

Ask Governor Brown to VETO the assisted suicide bill AB2x 15 .

A few lines are plenty! Plenty of material at Second Thoughts homepage.. If you are out of state, You can say this bill threatens everyone in the country.  Look at Diane Coleman’s letter to the California assembly. And John Kelly’s letter is here.

4. Tweet Governor Brown at .@JerryBrownGOV (Remember to put the “DOT first!)

Plenty of sample tweets at #AssistedSuicide #BlanketImmunity @NotDeadYetUSA @JohnBrianKelly @2ndThoughtsCT   @DREDF @NoSuicideCA @autselfadvocacy @NCILAdvocacy and so many great advocates!

5. Write a Letter or Send a Fax

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

Fax: (916) 558-3160

Remember, every single thing you to get the message to Governor Brown will be crucial to our victory. Do what is most comfortable!

***

If you’d like help with talking points, go to Second Thoughts, DREDF or the NDY Toolkit.