Fighting “Better Dead Than Disabled” – NDY Year In Review

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Cartoon drawing of wheelchair user looking at stairs to a suicide prevention door while pointed to an access ramp to an assisted suicide door.There’s never a dull moment in NDY’s fight against the constant messages that we disabled people are better off dead – and society is better off without us. We couldn’t do it without the active involvement of disability advocates and organizations. We may be small but, because of your efforts and support, together we are leaving a big footprint. For more details about our work, please see our Annual Activity Report below. And, if you can, please consider making a year-end donation to help us continue the fight for our lives.

Not Dead Yet Annual Report:  October 2020 – September 2021

Not Dead Yet (NDY) is a national disability rights group headquartered in Rochester, New York since 2008. NDY is governed by a national Board of Directors and currently employs three staff members, a President/CEO, Director of Minority Outreach and New England Regional Director. NDY also contracted with the Disability Rights Education & Defense Fund as well as individual disability advocates to do policy work, research and write on our issues. We were profoundly grieved by the passing of our partner and friend, Marilyn Golden, DREDF’s Senior Policy Analyst. NDY’s activities are summarized below.

Publications: During the reporting year, NDY published 47 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment and homicides of persons with disabilities. There were over 59,927 views of the website during the reporting year, and NDY posted 130 Facebook entries and 176 tweets. NDY created or participated in three videos on NDY topics.

Media: National NDY issued three press releases and participated in two press conferences. NDY staff, board and activists authored 9 op-eds published in mainstream outlets. NDY staff and advocates submitted 8 letters to the editor at least one of which was published. Print and broadcast media coverage: NDY staff, board and advocates were interviewed for one TV and seven radio broadcasts. There were at least 19 print or online news articles covering NDY messaging, including in the Washington Post, New York Times, Boston Globe, Hartford Courant and National Public Radio.

Systems Advocacy:  NDY staff and advocates pursued several key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.

  • Assisted Suicide: NDY opposed assisted suicide laws or expansion through training, community organizing, legislative meetings and testimony in seven states (CA, CT, MA, NV, NM, NY and RI). New Mexico legalized and California expanded assisted suicide, but the others did not. NDY’s Director of Minority Outreach worked in Massachusetts to form a group of Black disability advocates opposed to an assisted suicide bill. NDY also participated in efforts to support reintroduction of House Concurrent Resolution 79 expressing the Sense of Congress that assisted suicide laws are bad public policy.
  • COVID-19 and Crisis Standards of Care: Litigation in which NDY joined with NMD United and individual NY vent users in a civil lawsuit against the state (Not Dead Yet v. Cuomo) regarding a policy allowing reallocation of personal ventilators was filed Oct. 7, 2020 and continued throughout the reporting year. NDY continued blogging and other networking regarding discrimination in crisis standards of care.
  • “Futility” Cases: NDY joined in an amicus brief filed 10/08/21 in the Texas futility case of infant Tinslee Lewis. ASAN and NDY also filed an OCR complaint on 12/11/20 in the N. Garcia case involving a person with developmental disabilities denied COVID treatment.
  • Opposing QALYs: NDY participated in the Partnership to Improve Patient Care Rapid Response Workgroup challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions.
  • Opposing Bills to Make Assisted Eating Subject to Advance Directives and Surrogate Decisions: NDY worked with NYAIL and CDR to oppose NY A2634/S4967 which would allow assisted eating and drinking to be discontinued under advance directives and surrogate decisions, ending the life of a person deemed incapacitated. Met with Speaker Heastie and sponsoring legislators concerning the dangers of these bills to disabled people who require assistance to eat.
  • Non-Discrimination in Healthcare: NDY worked with DREDF and others on communications with the federal HHS Office for Civil Rights to advocate for improved policies on non-discrimination in organ transplant eligibility, futility and suicide prevention.

NDY also filed two formal public comments during the reporting period:

On 05/13/21, NDY also submitted a public comment thanking the National Council on Disability for its work opposing the use of QALYs in connection with the H.R. 3 bill and on Crisis Standards of Care. NDY signed onto 27 policy letters and position statements initiated by other organizations during the reporting year.

Conference, Workshop & Other Training Presentations: Not Dead Yet provided 30 online video training presentations, workshops, university guest lectures and webinars.

Collaboration and Networking:  Throughout the year, NDY participated in at least 108 meetings on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, and the National Disability Leadership Alliance.

 

 

Diane Coleman Letter Published in Buffalo News

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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.
Diane Coleman, JD, MBA
President/CEO
Not Dead Yet

John Kelly and Ruthie Poole Quoted On Disability Opposition To Assisted Suicide Bill

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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.”

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To read the whole article, go here.

U.N. Experts Say Disability Is Not A Reason To Sanction Medically Assisted Dying

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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.

Disability is not a reason to sanction medically assisted dying – UN experts

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.”

ENDS

The experts*: Gerard Quinn, Special Rapporteur on the rights of persons with disabilities;, Olivier De Schutter, Special Rapporteur on extreme poverty and human rights; and Claudia Mahler, Independent Expert on the enjoyment of all human rights by older persons

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.

If You’re Not Dead Yet, Please Support NDY On Giving Tuesday

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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.

Photo of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask
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.
Head and shoulders photo of smiling short haired white man with dark-rimmed glasses wearing a peach colored shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
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.

You believe in our goals:

  • Oppose legalization of assisted suicide.
  • Ensure that the withholding or withdrawal of life-sustaining medical treatment is truly voluntary, based on:
    • Informed consent with meaningful alternatives, including long term services and supports to live in the community; and
    • Surrogate decisions only when necessary, with clear and convincing evidence of the person’s wishes.
  • Oppose futility policies involving unilateral health care provider decisions to withhold or withdraw life-sustaining medical treatment.
  • Advocate for equal protection of the law in homicide cases when the victim is old, ill or disabled.

Your support makes our work possible. Please consider donating online today or follow the instructions to donate by check here.