Carol Cleigh Sutton: I Oppose Assisted Suicide and Euthanasia Because It Is Ableist

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The very heart of the argument for assisted suicide/euthanasia (AS/E) is that an individual may be better off dead than disabled.

The fact that this argument can be made in respectable public forums demonstrates just how ableist this society is. How deeply the severely abled fear and loathe those of us who live with disability.

Ableism, like racism and sexism, is an ugly prejudice that society holds towards its minority members.

What does ableism look like? First you exclude us from nearly all public life and especially gainful employment and instead put us ‘on the dole.’ Then, periodically, you cut those supports from under us or make us try to prove that we’re ‘worthy’ of such supports. You openly stare at us and your comments and prurient questions make public spaces hostile. If we object, you accuse us of being maladjusted or just not being able to take a joke. A disabled man in the Netherlands is constantly told that it is ‘his fault’ that he lives with a disability; after all, he could kill himself. Where AS/E has become the norm, disabled people are even more outcast.

Our lives are seen as not worth living, but these are the lives we have.

This ideology, which we call BDTD (Better Dead Than Disabled), permeates ableist society, but even more deeply infects the medical system, and the more society in general accepts it, the more we encounter it every time we have to deal with medicine. My husband, who was nearly 80 and disabled, was brought to the hospital by ambulance after a heart attack. Until I arrived and started raising the roof, they put him in a dark room in the back. He should have been connected to an EKG and given aspirin, and IV lines should have been established. But because he was disabled, he received none of this. They assumed he’d want to die. Thankfully, we had years after that, but if I’d been held up in traffic? Would their killing him have been prosecuted? Investigated?

Are you really wanting to create this ‘special class’ of people who can be killed and no one prosecuted? A class whose deaths won’t even be investigated? Is your ableism so strong that you’d change the law to allow others to kill us without consequence? That is what happens in Oregon. Thomas Middleton’s death was not prosecuted. Did he ingest the poison willingly or was his death part of the real estate fraud for which his ‘caregiver’ was prosecuted? It’s already all too easy for those who would inherit, or steal, our property to arrange our deaths. Do you really want to make it easier? In US jurisdictions, assisted suicide laws give immunity to those who kill so long as they choose their victims from among the old, ill and disabled.

Before you say that this isn’t about disability, it’s only for those who are imminently dying, let me remind you of two things: First, physicians are notoriously bad at predicting when we’ll die. Oregon state data show that people outlive their 6 month prognosis every year; one lived for 1009 days. (2016 report, page 11) I’m 10 years past my last expiration date, and more than 60 years past the first, and still going strong. Secondly, and perhaps more importantly, there has never been an instance where this is legalized that it hasn’t expanded far beyond those at whom it was originally aimed, sometimes with breathtaking speed. Canada is already moving to use it on people who are not imminently dying and they legalized it just a year ago and, in the Netherlands, even those who advocated for it say that it is out of control.

Because the argument is based on BDTD, all who are considered disabled are at risk.

Not Dead Yet Statement Condemning Racist Violence in Charlottesville, VA

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Beginning on August 11, 2017, hundreds of white nationalists have marched and committed racially motivated violence on the streets Charlottesville, Virginia. Today, on August 12th, a car driven by one of those racists plowed into a crowd of anti-racist protesters, killing one and injuring 19.

Not Dead Yet is horrified by and condemns this violence and the racism and anti-semitism that motivated it, and we deplore the failure of police and other authorities to protect innocent people.

As people with disabilities and our allies, Not Dead Yet acknowledges the shameful reality that our country was founded on racism and oppression of Indigenous people, African slaves and other marginalized immigrants.

In solidarity with the victims, their families and the city of Charlottesville, we state in the clearest terms that racism and anti-semitism, like misogyny, homophobia, transphobia, ableism and religious bigotry, has no place in our society.

[Thank you to Anita Cameron, NDY’s Director of Minority Outreach, for her assistance in preparing this statement.]

Anita Cameron: Three Big Reasons Black People Should Join the Anti Doctor-Assisted Suicide Movement

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(Head and shoulders photo of Anita Cameron, an African-American woman.)

Although a 2013 Pew Research Center study shows that 65 percent of Blacks are against assisted suicide, there are not many Blacks who are active in the anti-doctor assisted suicide movement. Here are three reasons that we Blacks must join this critical movement.

1. Our Healthcare System is inherently racist. Studies show that Blacks are treated differently than White patients and receive inferior care, particularly in the areas of cardiac, diabetes, and pain management. Blacks are more likely to die because doctors have overlooked something critical or will not listen to or believe what we have to say about our health and pain. This puts us at a greater risk for persuasion or coercion into assisted suicide should we acquire a terminal illness.

2. Black patients, particularly those of us with disabilities, are more likely to be poor and either not have access to or be aware of services, supports and financial assistance and accommodations, putting us at risk of doctors devaluing our lives and persuading or coercing us into assisted suicide, citing financial burdens on our families.

3. Groups like Compassion & Choices are making inroads into our communities and convincing some Black folks that doctor assisted suicide is a good thing when in fact it is not. We Black folks have a natural tendency toward suspicion of the medical community because of experiments like The Tuskegee Project, sterilization and other atrocities perpetrated against us without our knowledge or consent. As doctor assisted suicide becomes legal in more diversely populated states, Blacks and people of color will be at greater risk of this practice.

It’s time we stop looking at doctor assisted suicide as a privileged White folks issue. It’s also time that we expand our reason for objection from simply a religious issue to what it actually is–a deadly form of discrimination against people with disabilities and seniors. It sets up a two-tiered system where young, healthy folks get mental health treatment for suicidal feelings, while disabled, sick or seniors, especially poor folks, would get the “option” of doctor assisted suicide long before we get quality pain relief and other needed supports. This isn’t something that may happen. Insurers in Oregon and California have already begun to deny people cancer treatment and offer the suicide cocktail.

We need to join the disability community in speaking out and fighting against doctor assisted suicide. Don’t be fooled by Compassion & Choices, their media lackeys or doctors who place little or no value on our lives. Don’t fall into the trap of thinking that this is about “choices” or “rights”. It is about discrimination, plain and simple.

Lisa Blumberg: What Principles Should Govern Charlie Gard’s Case?

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The Charlie Gard case concerns a young British child with a very rare genetic condition that has currently left him unable to move, breathe or eat on his own. His parents wanted to take him to the United States for experimental treatment but his London doctors, believing he has suffered enough, wanted to turn off life support before that can happen.  In the protracted legal fight, the courts have sided with the doctors. The Gards have now given up the case, believing that the time during which there was  hope that Charlie could benefit from the treatment has passed. Their only request now, which entails a battle in itself, is that they be permitted to bring him home.

I cannot get a handle on the situation from news reports.  Is Charlie terminally ill or is he instead locked in? Do his doctors even know? Is he in irremediable pain or is his suffering intuited by his “undignified” circumstances? Would the new treatment, if given timely, have offered a hope of stabilizing his condition or giving him an increase in function, even though he still might have had a considerable disability? Would the treatment be very painful?  Thus, my eye caught on the title in Stat, “Why Charlie Gard’s case is so disturbing to Americans”.

Unfortunately, the opinion piece written by American ethicist Michael S. Dauber would have been better entitled “Why Charlie Gard’s case should not be disturbing to Americans”.

Dauber believes that Americans may be disturbed by a legal body determining the manner of a person’s death.  However, he feels that what must be remembered is that this is type of thing courts do in England.

He goes on to say that “as far as medical ethics theory goes”, the justifications of the courts in this case “are comparatively noncontroversial.” Wrapping up, he asserts, “…it’s important to keep in mind that such decisions are based on perhaps the most essential and cherished elements of ethical care…the alleviation and minimization of human suffering.”

So, suck it up, Americans!  Actually, the case is a much greater cause Celebre in Britain than it is over here.

I cannot comment on the decisions in the Gard case. I haven’t read them. However, is it possible – just possible – that a court in dealing a similar scenario might range beyond the well-being of the person involved and factor in public policy considerations? Might there be a concern that if one family could challenge medical decisions, others could as well, and then where would the health care system be?

Dauber all but ignores the twist in the Gard case. The Gard’s, conceding that there is nothing more that the London doctors can do for their son, wanted to change doctors and approaches. It seems as if the right to die (or for other people to have you die) can supersede the right to try.  This may be what is really troubling folks on both sides on the pond.

In the outpatient world, where medical ethics theory holds a bit less sway, people switch doctors all the time.

Indeed there are ethicists, including some who you may not expect, who believe that the Gards should have been allowed to seek new treatment for their son when there seemed to a narrow window of opportunity, instead of forcing them into court with the clock ticking. How does that minimize suffering?

To repeat, I don’t have an informed opinion on the decisions in the Gard case. I can say though why I am so disturbed by Dauber’s piece. His view at best is parochial. He appears to think that life and death decisions can be solely made “within frameworks of medical ethics” and does not acknowledge other perspectives. He hews to the formula – no likely benefit + likely harm = no treatment – without recognition that various ethicists have defined the terms benefit, harm and treatment in hugely different ways.  Then at the  end of the piece, he conflates medical ethical theory with ethical standards and talks about “enforcing” them. Have ethicists been elevated to an unelected, shadow legislature?  Can medical ethics theory be balanced by a presumption of the merits of survival?

My bent is towards equal protection and due process, principles enshrined in the U.S. Constitution and derived from the Magna Carta.

NDY Statement on the First Anniversary of the Sagamihara Murders

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[Editor’s note: Disability advocates in Japan requested this Statement which was written by Stephen Drake, NDY’s Research Analyst, and will be translated and read during a ceremony to be held on July 26, 2017 honoring the victims of the Sagamihara murders.]

One year ago, 19 disabled people were brutally stabbed to death by a young man who justified his murderous attack by saying disabled people “live like animals, not humans” and that “it’s better that disabled disappear.”

As we mourn, it would be wrong to dismiss this young murderer as uniquely “disturbed” or even “a monster.” Rather, his actions were simply the most extreme expression of the dehumanization, hatred and revulsion of disabled people still embedded in countless countries and cultures across the world.

Disabled people are still often forced into crowded and unsanitary living conditions, barred from participation in society, and even killed. The killing of disabled people most often occurs quietly – in institutions, in families and in smaller hate crimes. And then, when these horrible things happen, society blames disabled people – us – for what society has done to us. Unless society changes, more blatant and brutal acts of disability hate, such as the one that ended in the 19 deaths a year ago, are guaranteed to happen again.

Today is a day to mourn. Tomorrow – and every day – is the time to organize our disability rights and independent living movement. Organize and advocate for a world that respects the disability community for all our diversity and beauty. Organize and advocate for our right to live, go to school and work in our communities. Organize and advocate for our right to enjoy our lives and freedom like everyone else.

Across the world, let’s work together for a time when we can gather, not to mourn our murdered dead, but to celebrate our achievement of equality and justice for all disabled people.

***

A year ago, NDY reported on news coverage of the killings here, and the National Council on Independent Living issued a statement here.

A recent report in Japan Times states that the killer “was indicted in February on six charges including murder and attempted murder, but his trial is unlikely to start soon due to the volume of trial preparation work, according to judicial officials.”