Buffalo News published Diane Coleman’s letter (12/27/21) describing how “Assisted Suicide Puts Pressure On The Elderly And Disabled” – that’s the title that the NY Alliance Against Assisted Suicide correctly gave it. This letter is about the deadly mix between our profit-driven health care system and legalizing assisted suicide – will insurers do the right thing or the cheap thing? Unfortunately, the title Buffalo News gave it – “Many would not choose physician assisted suicide” – missed the point. Still, we appreciate that it was published. Here’s the letter:
Anyone who has received a health insurance denial knows something about the cost cutting pressures in the health care system. I have good employer sponsored insurance, but just received my second denial in two years of breathing support I need to live. Given my severe neuromuscular diagnosis, it’s outrageous that I have to go through an appeal again.
When proponents of physician assisted suicide claim there’s no reason to be concerned about legalizing intentional medical provision of lethal drugs, I wonder what planet they are living on.
The arguments in a recent Another Voice column and a responding letter ignore the economic pressures that too often deny needed health care and home care to individuals and families. The column asks, “Would they want to die in their sleep, comfortable, surrounded by loved ones? Or would they rather be hooked up to hospital machines for days, suffering…,” falsely indicating that we don’t already have the right to refuse machines and hospitals in favor of palliative care that lets us die in our sleep. The proponent letter in response admits this, but tries to leverage current legal options into a “why not” argument for assisted suicide.
What they’re really talking about is throwing older, ill and disabled people under the bus, just as society has already been doing throughout the pandemic. Experience and reason tell us that, in a profit driven health care system, assisted suicide laws will only add pressures to die sooner than some of us would choose.
A Boston University News Service article, Medical aid in dying bills split Massachusetts once again, yesterday extensively quoted John Kelly, NDY’s New England Regional Director, as well as Ruthie Poole, President of the statewide organization M-POWER. While their disability rights based concerns about the Massachusetts assisted suicide bill should have been featured much earlier in the article, their insights contributed to a more balanced overall piece than we usually see. Below are the quotes and paraphrases from these two strong disability activists:
John Kelly, director of the disability rights group Second Thoughts Massachusetts and New England Regional Director of Not Dead Yet, said his organizations have been fighting against aid-in-dying bills for years.
“The proponents say that it’s about pain and suffering,” said Kelly. “But it’s almost never about pain. It’s about dignity and control.”
***
A recurring concern from the opponents is that the choice to end one’s life, while marketed as an individual one, is never truly individual, as people can experience pressures from friends and family. People who seek to end their life, said Kelly, do so because they fear being a burden or because they are upset about losing “dignity and social status.”
Ruthie Poole, president of M-POWER, a statewide organization made up of people with “lived experience of mental health diagnosis, trauma, and addiction,” testified that the bill would disproportionately affect people with mental health.
“Suicide contagion is real,” Poole said. “Any assisted suicide program will send the message to people in mental distress – old, young, physically ill or not – that suicide is a reasonable answer to life’s problems. It isn’t.”
Kelly, who has been paralyzed below the shoulders since his 20s, said that the prejudice stacked against people with disabilities and social situations are driving these bills. If passed, he said, they would only reinforce the idea that a life as a disabled person is a life not worth living.
“People who have spent their whole life identifying as able, when they become disabled, they use the same prejudice that they applied against others to themselves,” Kelly said. “Because in this country, if you’re disabled, you’re seen as less than.”
Many opponents of the bill argue that the focus should be on providing better end-of-life care, rather than death. In particular, they noted the COVID-19 pandemic highlighted the disproportionate care received by communities of color and the disability community.
Focusing on providing better choices includes providing financial support to the patients, providing home care, and ensuring they do not have to rely on their families at the end of their lives.
“As palliative care experts say, there’s always more that you can do,” Kelly said. “What we think is that palliative care should be improved and everyone should have the same rights to counseling, spiritual guidance, pain relief.”
In recognition of the December 3rd International Day of Disabled Persons, NDY posts the following statements by United Nations experts contained in a press release issued earlier this year.
GENEVA (25 January 2021) – UN human rights experts today expressed alarm at a growing trend to enact legislation enabling access to medically assisted dying based largely on having a disability or disabling conditions, including in old age.
“We all accept that it could never be a well-reasoned decision for a person belonging to any other protected group – be it a racial minority, gender or sexual minorities – to end their lives because they experience suffering on account of their status,” the experts said.
“Disability should never be a ground or justification to end someone’s life directly or indirectly.”
Such legislative provisions would institutionalize and legally authorize ableism, and directly violate Article 10 of the UN Convention on the Rights of Persons with Disabilities, which requires States to ensure that persons with disabilities can effectively enjoy their inherent right to life on an equal basis with others.
The experts said that when life-ending interventions are normalised for people who are not terminally ill or suffering at the end of their lives, such legislative provisions tend to rest on – or draw strength from – ableist assumptions about the inherent ‘quality of life’ or ‘worth’ of the life of a person with a disability.
“These assumptions, which are grounded in ableism and associated stereotypes, have been decisively rejected by the Convention on the Rights of Persons with Disabilities. Disability is not a burden or a deficit of the person. It is a universal aspect of the human condition.
“Under no circumstance should the law provide that it could be a well-reasoned decision for a person with a disabling condition who is not dying to terminate their life with the support of the State.”
The experts said that even when access to medical assistance in dying is restricted to those at the end of life or with a terminal illness, people with disabilities, older persons, and especially older persons with disabilities, may feel subtly pressured to end their lives prematurely due to attitudinal barriers as well as the lack of appropriate services and support.
“The proportion of people with disabilities living in poverty is significantly higher, and in some countries double, than that of people without disabilities,” they said. “People with disabilities condemned to live in poverty due to the lack of adequate social protection can decide to end their lives as a gesture of despair. Set against the legacy of accumulated disadvantages their ‘architecture of choice’ could hardly be said to be unproblematic.”
The experts also expressed concern at the lack of involvement of people with disabilities, as well their representative organizations, in drafting such legislation. “It is paramount that the voices of people with disabilities of all ages and backgrounds are heard when drafting laws, policies and regulations that affect their rights, and especially when we talk about the right to life,” they said.
“Ensuring that people with disabilities and their representative organisations participate meaningfully in key legislative processes affecting them, including with regard to assisted dying, is a key component of States’ obligations to promote, protect and fulfill human rights and respect everyone’s right to life on an equal basis.”
The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.
Please consider supporting NDY. This is our 25th year fighting the messages and policies that say “better dead than disabled.” You know who we are.
Diane Coleman, a white woman wearing a red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask.Anita Cameron, an African American woman smiling with long dreadlocks and brown sweater.John B. Kelly, a short haired white man smiling with dark-rimmed glasses wearing a peach colored shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
And many of you know the incredible and dedicated members of our Board of Directors, Samantha Crane, Horacio Esparza, Amy Hasbrouck, Lydia Nunez Landry, Germaine Martin, Shonda McLaughlin, Mike Volkman and Emily Wolinsky.
In a November 14th article in The Epoch Times entitled ‘Death Is Becoming an Industry’: Euthanasia Opponents Bemoan Rise in Medically Assisted Deaths in Canada, Euthanasia Prevention Coalition Executive Director Alex Schadenberg discussed the growing momentum of euthanasia in Canada. The article by Lee Harding included the following extensive quotes from NDY Board member Amy Hasbrouck about society’s devaluation of disabled people how we are treated as having —
‘More Disposable, Less Valuable’ Lives
Amy E. Hasbrouck, a white woman smiling with short dark hair and a white shirt.
Amy Hasbrouck, a Quebec resident and executive director of Toujours Vivant – Not Dead Yet, a project of the Council of Canadians with Disabilities, said the disabled have actively opposed euthanasia for over 35 years.
“Consciousness was made during the landmark case when Robert Latimer killed his 12-year-old daughter, [Tracy]. And while the court engaged appropriately by convicting and sentencing him to the usual sentence, the amount of public support he received for his desire to have a more lenient sentence was really shocking to those with disabilities,” Hasbrouck said in an interview.
“We’re accustomed to being considered more disposable and less valuable, but we were fairly surprised that people were so overt in their declarations that Tracy’s life was not worth living.”
The Truchon decision in Quebec in September 2019 legalized euthanasia for the disabled across Canada, a decision Hasbrouck believes did more to devalue people with disabling health conditions than empower them.
“The judge, basically, instead of saying, ‘You’re right. That’s the problem of our public policies and the way we treat disabled people. We need to do things differently,’ she said, ‘Oh, yes. You’re right. You should have the right to be killed by the state because, of course, you wouldn’t want to go into a nursing home,” Hasbrouck said.
“So the judge’s solution was, they would be better off dead.”
In 2020, Jonathan Marchand, a Quebec City man with muscular dystrophy, camped out in a makeshift cage in front of the Quebec National Assembly for five days to protest his confinement in a nursing home due to the lack of independent living options for people with disabilities.
“Quebec resisted and dragged their feet. And ultimately, they allowed Jonathan to create a program for himself, but they refused to extend the pilot project to other people. … [Yet] it costs less for somebody to live in the community than for the person that lives in an institution,” Hasbrouck said.
“It became much more apparent during the COVID pandemic that society in general considered disabled people [and the elderly in nursing homes] as a disposable population. Those are trends that we have seen most recently that are very worrisome.”
