Disability Advocates Concerned As AMA Refers Assisted Suicide Policy for More Study

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Not Dead Yet, the Resistance

For Immediate Release: June 11, 2018

Contacts:
Diane Coleman 708-420-0539
Marilyn Golden 510-549-9339

Disability rights advocates led by Not Dead Yet are concerned with the American Medical Association’s decision today to continue studying the issue of physician assisted suicide. While the AMA’s longstanding policy against assisted suicide still stands, a simple affirmation of the policy was defeated in a 46-53% vote.

The current AMA policy states, in essential part:

“[P]ermitting physicians to engage in assisted suicide would ultimately cause more harm than good.

“Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Two years ago, some AMA members raised the possibility of taking a neutral stance on the issue, and the matter was referred to the AMA’s Council on Ethical and Judicial Affairs. After two years of study, the Council recommended that the AMA maintain its policy opposing assisted suicide, but this recommendation was not accepted and the matter was referred back for further study.

“We had hoped that the AMA would follow the Council’s lead and affirm current policy once and for all,” said Diane Coleman, president and CEO of Not Dead Yet, a national disability organization. “Assisted suicide proponents have repeatedly tried to make this a culture war issue, ignoring the strong opposition of the AMA and other medical organizations, as well as numerous national disability organizations. But we’ll keep fighting for this critical protection for patients.”

The top three concerns raised by disability advocates in opposing assisted suicide bills have been:

  • If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Will insurers do the right thing, or the cheap thing?
  • Elder abuse, and abuse of people with disabilities, are a rising problem. Where assisted suicide is legal, an heir (someone who stands to inherit from the patient) or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no witnesses are required at the death, so who would know?
  • Diagnoses of terminal illness are often wrong, leading people to give up on treatment and lose good years of their lives, and endangering people with disabilities, people with chronic illness, and other people misdiagnosed as terminally ill.

Coleman has analyzed the Oregon state assisted suicide data and found that it substantiates a number of their concerns. This information was included in Not Dead Yet’s second of two formal submissions to the AMA Council on Ethical and Judicial Affairs.

“If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes, coercion and abuse,” said Marilyn Golden, senior policy analyst with the Disability Rights Education and Defense Fund. “No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.”

 

John Oliver Takes on Guardianship Abuse

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For anyone unfamiliar with the show, HBO’s “Last Week Tonight with John Oliver” features in-depth, dark – and often viciously humorous takes on important news. The last show shared the often dark and abusive sides of guardianship in the USA:

This video is captioned. Three things about the captioning:

  1. The captioning is mostly accurate;
  2. John Oliver is a very fast talker – as a consequence, the captioning sometimes flies by quickly;
  3. For some reason, every expletive spoken is deleted from the captioning.

I recommend watching it and sharing it. While you’ll laugh in places, it’s a serious take on a serious topic – the rampant exploitation of people who lose their rights to control their own lives.

NDY UK Advocate Jamie Hale On Why Disabled People Fear Assisted Suicide

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A great opinion piece by Jamie Hale begins with a photo of two women in wheelchairs, seated in front of several artful props that suggest a graveyard. The photo has a caption above and below: I can see no safeguards to prevent people being pressured into ending their lives. What we need is more support to live . . .  ‘All I see is a system which divides lives, offering suicide prevention to some, and euthanasia to others.’ Campaigners against assisted suicide outside the Royal Courts of Justice in London.”

The article itself begins:

Opposition to assisted suicide – also called assisted dying – is characterised as being the preserve of the religious, stuffy and outdated, like religious opposition to gay marriage and abortion. In reality, some of the loudest voices opposing it are those of people with disabilities – because we have the most to fear. A poll done by Scope (a disability charity) showed that the majority of disabled people (64%) were concerned about moves to legalise assisted suicide.

Arguments around the legality of suicide and the right to refuse treatment are often conflated with assisted suicide. Suicide is legal, and there is already a right to refuse treatment. People with mental capacity can also create an advance directive to ensure their wish to refuse treatment is respected in future. This leaves people often able to die on their own terms. What assisted dying advocates are requesting is to create a system in which it is legally and morally permissible for people to engage in a deliberate action designed to end someone else’s life.

***

Some 5% of people in Oregon dying by assisted suicide cited financial pressures as a cause. Meanwhile, the number citing being a “burden on family/friends/caregivers” increased from 13% in 1998 to 55% in 2017. This tallies with Scope’s research that the majority of people with disabilities are concerned that legalising assisted suicide might lead to disabled people choosing it in order not to be a burden on others.

To read the full article, go here.

Disability Activist Stephanie Woodward Quoted In An NY Newspaper Article

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An article in the Altamont Enterprise included some great quotes by disability rights activist Stephanie Woodward.

Stephanie Woodward, director of advocacy at the Center for Disability Rights, said that “assisted suicide has a discriminatory, disparate impact on disabled people that is deadly and can’t be reversed.”

Data from the state of Oregon, where medical aid-in-dying has been allowed for over two decades, according to Woodward, shows that the top five reasons people choose assisted suicide have nothing to do with pain, but instead have to do with disabling conditions, like “feeling like a burden on my family,” or “feeling like you have a loss of autonomy or independence,” or “loss of bladder or bodily function control.”

Actually, in the data, these responses do not fall under a heading of reasons for wanting to die, but “end of life concerns.”

Woodward said, “These are all disabling conditions that people with disabilities face every single day, and we don’t believe that they should be a basis for wanting to die.”

The idea that they do make terminally ill people in Oregon want to die clearly shows the need for more supports and services, Woodward said, adding, “If our health care does not provide the services and support people need to live, then we cannot create an option to die and call it an option.”

Unfortunately, Woodward’s important insights are left till near the end. The article focuses on a few people who want assistance to commit suicide, downplaying the fact that what assisted suicide bills really do is grant a virtually unassailable immunity to doctors and other people involved in the death. In practical terms, the bills offer no protections for a patient from healthcare providers or family members who have financial or other motives to coerce or engage in any form of foul play. 

The article also discusses how hospice is insufficient, but then provides examples of people getting healthcare treatments they don’t want. These examples make no sense given the clear right to refuse treatment. Despite all the article’s comments about hospice, it never mentions the surprising fact that New York has an extremely low rate of hospice use – it’s #48 in the nation.

Michael Burgess of Guilderland, the former director of the New York State Office for the Aging and a spokesman for the New York Alliance Against Assisted Suicide, said he likes to seek common ground; what people on both sides of this issue have in common, he emphasized, is concern for people who are suffering at the end of life.

“A lot of older people can be depressed and can feel like it’s time to go,” Burgess said, “or they feel like they’re being encouraged in that direction.”

Burgess wants to see hospice and palliative care expanded and more widely publicized, so that more people know more about it. Also key, he says, are social and spiritual support. Having a “network of care” in place that includes all of those elements, he said, even in states like Oregon that have enacted legislation, can often be enough, he said.

Introduction by Sarah Cavar – New NDY Intern!

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Sarah Cavar

Hello all, I’m Sarah Cavar and I use they/them/theirs pronouns. I’m proud and delighted to be Not Dead Yet’s first intern. I’m a person of several labels: I’m genderless (my preferred term is “neutrois”), a lesbian, Mad/disabled, and neurodivergent. I’m a full-time student, and when I’m not doing student-y things, I’m reading, writing (fiction, creative nonfiction, poetry, and news), editing (zines and for my college’s newspaper), and working at my college (as a peer writing mentor and as an assistant to our office of disability services).

I’m nineteen and going into my junior year this fall; my major is a subject called “critical social thought.” Within the wide, varied collection of critical-theory related areas of study covered by this label, I focus on critical disability/mad studies and gender & sexuality studies. I marry these two in my focus on pathologization (how peoples’ minds and bodies are marked as disabled/deviant), biological essentialism (the reduction of peoples’ behavior, appearance, etc. to biological things like genes and hormones rather than social conditions), power relations, and the consequences of those things across spacetime.

I was first exposed to disabled community and activism through the internet, in a completely unintentional way. When I was twelve, I stumbled upon the then-recently-published, now-disability-internet-classic blog post Quiet Hands by Julia Bascom. From there, I fell down a rabbit hole of autistic blogs and bloggers –– all of whom resisted the stereotype that autistic people are “lost” to the world, an idea perpetuated by Autism $peaks and their ilk.

From the blogs I read, I gained access to critical analyses of dangerous, ableist content. I also began to read the similar blogs of otherwise disabled writers and activists. I remember where I was when I watched A$’s infamous video, “Autism Everyday.” I was at my dining room table, alone and overwhelmed. In the video, a mother of an autistic child discusses, in front of said child, the way raising an autistic person drives her to consider committing murder-suicide. I learned quickly that the shiny veneer of “tolerance” that some disabled people see is always moments from giving way to the true, deadly intentions of abled society.

Then, in 2013, after already having followed the writings of writer-activist-powerhouse (and genderless person, like me!) Amanda Baggs (who prefers sie/hir pronouns, which I will be using for this reason), I learned that there were a number of doctors who wanted hir to die. This awakened me to the logical conclusion of ableist “cure” and “quality of life” rhetoric: efforts toward the eradication of disabled people. NDY covered the case, as did many others. Today, Baggs remains happily alive, but I learned from following hir case that there are many unknown disabled people who would not be so lucky as sie was.

I carried Baggs’ case with me as I learned more about eugenics, and also as I myself experienced medical/psychiatric abuse and mistreatment. I read the work of Harriet McBryde Johnson (RIP). In my first year of college, I read the work of Dorothy Roberts as well as others, which discussed the intersection of race and class with dis/ability and who is permitted to live and die.

I learned that becoming-disabled is believed to destroy the possibility of a “good life” –– that is, a “productive life” –– instead of starting a life both unique and valuable. Given the social conditions that call devalued lives “disabled” and then call “disabled” lives worthless, I know that we cannot divorce “personal” decisions around assisted suicide from cultural ideas of worth that exclude disabled people.

Free choice –– including the choice to live or die –– is not possible in a society whose very culture wants some minds and bodies gone; a culture in which this idea permeates our institutions, language, and relationships. It is dangerous to assume any person’s thoughts of suicide to be separate from social and cultural factors, and this includes the thoughts of those considered “terminal”.

My opposition to assisted suicide also stems from my understanding that the medical/psychiatric system routinely denies its patients autonomy –– especially when those patients are marked as disabled, as racialized, as non-men, as a sexual minority, as migrants, and as poor. In the medical system, it’s easy and frightening to observe the state of power relations today, including the way “professionals” hold the ability to dictate who lives and dies. Assisted suicide itself rests on the notion that the figure of The Doctor should be the gatekeeper between life and death, and that we all ought to defer to them.

We as disabled people must resist entrusting our lives and deaths to those schooled to see us as less-than-human. For this same reason, I as a psychosocially disabled, neurodivergent person do not entrust my mental wellbeing to someone who wants to cure the world of my existence. As knowledge is power, we must also gain an understanding of the forces that shape who and what we are in this world, realizing that no one is worthless in and of themselves, but is instead marked that way by oppressive outside sources. For me, opposing assisted suicide is not only rooted in a love and acceptance of all bodyminds as they are, but also in a devotion to exposing and changing the norms that produce “worthless” bodies in the first place.

My academic work has given me a lens through which I can peer at experiences I and those I care about have had. I hope to help write and argue on behalf of all of those living these experiences daily, but not taken seriously in the academic arena. I hope to share my knowledge with a wider audience through Not Dead Yet, make connections and learn from others, and take on some of the everyday labor required to make NDY’s content available and accessible for all.

Thanks for reading!