NDY In Solidarity: Speaking Out Against Racism

Anita Cameron, disability rights, inciting violence, media coverage, Our News & Commentary Blog, racism,

NDY’s Director of Minority Outreach Anita Cameron is often interviewed by both disability and mainstream press. She has a long history of activism on behalf of disability rights, especially in her decades of work with ADAPT to get lifts on buses as well as major increases in home and community-based services that help older and disabled people stay out of nursing homes. Media outlets often contact her as a spokesperson about that history.

Since Anita joined NDY’s staff in 2017, media have also contacted her about NDY issues, especially during 2020 concerning COVID crisis standards of care.

When articles quoting Anita don’t include NDY issues, NDY doesn’t typically mention them in this blog. We don’t get comments about them. An example would be a recent Time magazine article. But this week, apparently in response to that article, NDY received a comment that is horrific and cannot be ignored.

This comment was submitted on a blog featuring Anita’s October 2nd testimony at ADAPT’s virtual People’s Hearing on home and community based long term services and supports:

“The USA needs an all out race war and n***** wh***s like you need to be hanging from trees!”

This is an outrageous call to bring lynching back! It descends to the grotesque depths of human capacity for hatred and violence. And it’s one of too many comments NDY and Anita have received in recent days. There have also been many Facebook comments and Anita Cameron has reported receiving death threats by direct message.

I know there are people out there who will want to know more, trying to find some way to shift some blame to Anita for becoming a target of racial slurs and death threats. When Time contacted Anita about being interviewed, she was told the article would be about disability representation more broadly and not all about Helen Keller. Her only statement about Helen Keller – “I don’t have a perspective on Helen Keller. She’s just another, despite disabilities, privileged white person” – is simple fact. Keller’s family was well off.

NDY will continue to work in solidarity with the disability rights and broader community to combat racism. We raise our voices to support Anita Cameron and all who have experienced racial injustice in all its forms.

NDY condemns these outrageous comments and the social/political climate that gives them any form of permission to be expressed. They are unacceptable. They must not be tolerated. Whenever racism rears it’s ugly head, many say this isn’t who we are, this isn’t our country. But it has been from the beginning. We must acknowledge this and then work harder to end it.

 

Carol Cleigh Sutton: We Hold These Truths To Be Self-Evident…

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…but we don’t.

Image of Carol Cleigh Sutton, a fair skinned woman with white hair, pulled back, wire rimmed glasses, and a white turtle neck top with a silver necklace featuring two connected silver handcuffs with small white stones.
Carol Cleigh Sutton

In a phone conversation, a friend of a friend invited me to an event in the Spring. I said that it would depend upon a vaccine for Covid-19. Since our mutual friend and I are both high risk, neither will be traveling before then. She then volunteered that she thinks people in nursing homes ought not to get the vaccine because they are “useless.” A perfectly ordinary retired nurse, has no problem with people already denied liberty and mostly denied the pursuit of happiness, being denied life as well. In her view, equality, held to be ‘self-evident’ in the Declaration of Independence, doesn’t exist.

When I recounted this conversation to our mutual friend, she recounted a similar conversation she’d had with her brother. He had maintained that the virus only kills “the unproductive.” That is, until a good friend of his died.

The truth is that the history of human civilization is a tension between two positions: hierarchy of value and equity of value. Either we value all human lives equally or we don’t.

Many ideologies defend hierarchy, Divine Right to Social Darwinism to Utilitarianism have tried to normalize the rejection of equality. Of these, Social Darwinism and Utilitarianism seek to ‘perfect’ humanity by killing those they consider ‘useless.’

We come down on the side of hierarchy at our peril. There is real peril of becoming a victim, because those who have gone down the hierarchy rabbit hole have never been able to put limits on the devaluation of lives. They see society as a pyramid with themselves at or near the apex. When you cut off the base of a pyramid, you have a slightly shorter pyramid and new victims at it’s base. That retired nurse may well find herself being called “useless” by more privileged people at some point.

Niemöller wrote “First They Came,” as a warning to future generations, and make no mistake, in reality they came first for the disabled. We refuse that warning at peril of becoming monsters. Consenting to the deaths of others, even considering others ‘useless,’ causes us to lose something of our own humanity, something we can ill afford to lose.

Amy Hasbrouck Submits Powerful Testimony To Canadian Senate Committee

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On November 23, 2020, Amy Hasbrouck, NDY Board Member and Director of Toujours Vivant-Not Dead Yet, submitted testimony to the Senate Legal and Constitutional Affairs Committee of the Canadian Parliament.

Head and shoulders photo of white woman smiling with dark brown hair combed back from her face, wearing a white blouse.
Amy E. Hasbrouck

First, her description of TVNDY is a strong and moving introduction to the disability rights opposition to assisted suicide and euthanasia laws:

Thank you for the opportunity to address the committee. Toujours Vivant-Not Dead Yet (TVNDY) is a project of the Council of Canadians with Disabilities to inform, unify and give voice to the disability rights-based opposition to assisted suicide, euthanasia, and other ending-of-life practices that have a disproportionate impact on disabled people, women, elders, indigenous and racialized people, and persons subject to other forms of oppression. TVNDY was founded in 2013 as a progressive, non-religious organization of disabled people and our allies. We believe that there can be no free choice to die while old, ill and disabled people don’t have a free choice in where and how we live. We recognize that the movement toward assisted death is driven by the devaluation of disabled lives captured in the phrase “better dead than disabled” and manifest in society’s inequitable application of suicide prevention policies; where non-disabled people who want to die get suicide prevention services, while disabled people get suicide completion assistance.

The Canadian Parliament will soon be voting on a bill to expand the current euthanasia bill. This bill is in response to a court case (Truchon, et al.) in which two disabled people, one with cerebral palsy and one with MS, sued because doctors would not say their deaths were “reasonably foreseeable,” the vague standard under the current law. The testimony sums up the situation as follows:

In its 2015 decision in Carter v. Attorney General of Canada that struck down the prohibition on physician assisted dying, the Supreme court said that protecting “vulnerable” people (such as elders, women, LGBTQI and disabled folks, indigenous and racialized people) would require a “carefully designed system imposing stringent limits that are scrupulously monitored and enforced.” The language and implementation of Bill C-14, the medical assistance in dying or MAiD law have not met the Carter mandate.  Bill C-7 compounds this failure by rolling back protections beyond what is mandated by the Québec superior court in the Truchon c. procureur généraldecision, and before parliament has done the five-year review required in the MAiD statute. Far from being “an exceptional measure for exceptional cases” . . . , Canada’s program already has resulted in the deaths of nearly 20,000 disabled people, many of whom also have a terminal illness.

The TVNDY testimony highlighted the lack of independent living options impacting people with disabilities who request euthanasia, and pointed to concerns raised by the United Nations Special Rapporteur on the Rights of People with Disabilities:

In her 2019 End of mission statement, the United Nations Special Rapporteur on the Rights of People with Disabilities, Catalina Devandas Aguilar said she was “extremely concerned about the implementation of the legislation on medical assistance in dying” as well as the lack of options for independent living. In our series of webcasts “No Free Choice” TVNDY has documented numerous examples of persons who sought assisted death because they did not have the services and supports they needed to maintain a reasonable quality of life. . . . During the pandemic, disability rights activists have joined with racial and other social justice movements to declare that #NoBodyIsDisposable, yet 80% of deaths from COVID-19 have occurred in long-term care facilities.

Hasbrouck pointed out that the proposed amendments to the Canadian bill go beyond what would have been required by the recent Truchon decision, and make matters worse “before the five-year review mandated by Bill C-14 has been accomplished.”

Bill C-7 would reduce the number of witnesses required to sign the written request from two to one, and allow that person to be a care provider, thus setting the stage for an abusive attendant to coerce a person to ask for death, and then serve as the only witness to the request. Instead of clarifying what it means for someone’s natural death to be “reasonably foreseeable” — or scrapping the slippery and malleable concept altogether — Bill C-7 puts those folks on a fast-track to death.  The bill would eliminate the ten-day reflection period, as well as the requirement that the person be able to confirm their consent when the lethal injection is given; thereby creating a de facto advance directive. So even if a person must wait weeks to see if an antidepressant will relieve their emotional distress, or months to get access to palliative care, they can get the deadly dose right away.  That person with the abusive caregiver mentioned earlier; no one will even blink if they’re euthanized the same day they’re approved (as happened in Québec).

The testimony concludes:

Instead of rushing to pass over-reaching legislation to meet a court-imposed deadline in the midst of a pandemic, parliament should concentrate on performing a rigorous and balanced examination of the euthanasia program as a whole.  Parliament must determine whether the MAiD law . . .monitoring system is robust enough to detect problems, prevent the deaths of ineligible persons and impose consequences for those deaths. The five-year review could also answer the question whether it’s possible to enforce the MAiD law, let alone if it’s being enforced. Anything less would be a betrayal of the democratic process and the public trust.

To read the full testimony, please go to the TVNDY website here.

NDY Joined In PIPC Comment, and Filed Its Own, Regarding PCORI Principles

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At first, responding to the draft principles of the Patient-Centered Outcomes Research Institute (PCORI) seemed more complex than NDY could fit into our tight schedules. But the principles were in response to new language added to PCORI’s authorizing law:

. . . In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively. . . .

“Potential burdens and economic impacts” on “different stakeholders”? That language raised concerns.

Fortunately, the Partnership to Improve Patient Care (PIPC) took on the task of developing a comprehensive public comment on the draft PCORI principles. NDY signed onto that, along with many other groups.

In addition, NDY submitted a short comment of our own, as follows:

Not Dead Yet is a national disability rights group whose focus includes protecting the right to receive desired life-sustaining care. Not Dead Yet has signed on to the comment submitted by the Partnership to Improve Patient Care, but we would like to submit a short additional comment.

A significant concern is the impetus behind the 2019 amendment to the PCORI reauthorization, which included the following ominous language:

“Research shall be designed, as appropriate, to take into account and capture the full range of clinical and patient-centered outcomes relevant to, and that meet the needs of, patients, clinicians, purchasers, and policy-makers in making informed health decisions. In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively.”

The PCORI Principles further clarify that “PCORI is charged with considering the full range of outcomes that meet the needs of ‘clinicians, purchasers, and policy- makers in making informed health decisions,’ in addition to those that meet the needs of patients.”

While it is comforting that PCORI reaffirms “the limitation that PCORI ‘not develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended,’” the 2019 amendment muddies the waters at best.

The principles are very well word-smithed, but the health insurers and other stakeholders whose highest priority is increasing their economic bottom line are very good at word-smithing as well. The amendment is a loophole, a potentially dangerous loophole, slipped into the PCORI authorizing legislation.

PCORI will have to be vigilant to prevent various stakeholders from using PCORI to their economic benefit at the expense of patients. Given the longstanding cost-cutting pressures in the healthcare system, now increased by the COVID crisis, this will be no small task. We hope that you will seek the assistance of a broad array of disability organizations in your efforts.

John Kelly – Assisted Suicide: It’s All about Disability

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Proponents of assisted suicide laws have insisted for years that assisted suicide has nothing to do with disability, when a glance at the reported “end of life concerns” in Oregon showed those concerns to be all about people’s psychological distress over the disabling aspects of their serious disease.

As one example, lead Massachusetts proponent of the assisted suicide ballot question in 2012, Dr. Marcia Angell, told radio station WBUR that “This has nothing to do with disabled people, nothing whatsoever… It’s fine for them to take whatever position they want to. But they have no special standing.”

On September 30, Director of Second Thoughts MA John B. Kelly engaged in a two-hour debate [full debate not yet captioned] on assisted suicide with Thaddeus Pope, the Director of the Health Law Institute at the Mitchell Hamline School of Law. During a segment discussing a question from a Massachusetts disabled man who would want to use assisted suicide because of feelings around incontinence, Pope and Kelly had the following exchange.

Referring to the Oregon reports, Kelly said that assisted suicide laws are “all about disability. All the reasons are about disability.” Pope replied, “Well, I mean, they are. I mean, that’s worth conceding, I think.… So everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability.”

He concludes that “I guess the key thing is that’s their judgment, right? Some people would say, ‘I find this condition intolerable.’ Other people won’t.”

Kudos to Thaddeus Pope for his honesty!

Now if other proponents can be equally as honest, we can have out in the open the outrage of declaring some people are “better dead than disabled.”

Second Thoughts MA and the national disability rights group Not Dead Yet argue that disabled people deserve equal protection under the law regarding suicide prevention services.

The transcript of the exchange is as follows.

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 Kelly

Thaddeus Pope: It’s a framing question. Is the State of Massachusetts thwarting, is it getting in the way or is it facilitating? All he wants is for the State of Massachusetts to get out of the way. He’s not asking for affirmative support or anything like that. He just says, just decriminalize it. Because as of now, the state government of Massachusetts has inserted itself between him, this questioner, and his physician. And all he wants is for the state to get out of the way.

John Kelly: I would say that, you’ve turned that on its head. The state gets involved by approving of the person’s reasons for wanting to die, and giving the doctor immunity by prescribing this. Now, if someone wanted to die because they felt that extraterrestrial beings were assaulting them and trying to kill them, well, they probably wouldn’t be seen as rational. But as long as the formulation that it’s rational for a person to feel lack of dignity over incontinence, then we are instituting massive prejudice against people who live with those conditions. That seems self-evident to me and I don’t understand how people can say, “oh, it has nothing to do with disabled people.” When it’s all about disability. All the reasons are about disability.

Moderator Lisa Schiltz: Thaddeus.

Thaddeus Pope: Well, I mean, they are. I mean, that’s worth conceding, I think. I mean his diagram, the two Venn diagrams, everybody who’s terminally ill probably is definitionally disabled. So if you have metastatic terminal cancer, you’re disabled. So everybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability. It’s because of the cancer or the side effects or the conditions from the cancer. So that’s a true statement, but I guess the key thing is that’s their judgment, right? Some people would say, “I find this condition intolerable.” Other people won’t.