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.”
[THE COMMENT DEADLINE HAS BEEN EXTENDED TO DEC. 12. Go to www.regulations.gov.]
November 12, 2021
Jeffrey A. Koses
Chairperson
United States AbilityOne Commission
1401 S. Clark Street, Suite 715
Arlington, VA 22202
RE: RIN 3037-AA16 Prohibition on the Payment of Subminimum Wages Under 14(c) Certificates as a Qualification for Participation as a Nonprofit Agency Under the Javits Wagner O’Day Program
Dear Chairperson Koses:
Not Dead Yet is a national disability rights group that focuses on healthcare policies that are commonly referred to as “end of life.” All too often, these policies involve ending the lives of people with disabilities based on quality-of-life judgments. We appreciate the opportunity to comment on the recently published notice of proposed rulemaking (NPRM) titled Prohibition on the Payment of Subminimum Wages Under 14(c) Certificates as a Qualification for Participation as a Nonprofit Agency Under the Javits Wagner O’Day Program.
Not Dead Yet has joined with leading disability organizations like the National Federation of the Blind, Autistic Self Advocacy Network and others that have been consistent and vocal advocates for the elimination of the Section 14(c) special wage certificate program. As an organization concerned with the ways in which society undermines the economic security of disabled people, we are pleased to have been a part of the fight to ensure that people with disabilities receive the training, support, and ultimately the opportunity to obtain competitive integrated employment. We are also pleased to see the growing recognition that the Section 14(c) program represents a harmful and wrongful devaluation of disabled people.
Not Dead yet strongly supports the NPRM in prohibiting nonprofit agencies from paying subminimum wages on AbilityOne contracts. Moving forward with this rulemaking will send a strong message that the federal government neither supports nor condones the practice of paying less than the minimum wage to employees with disabilities.
As the NPRM states, the “costs of requiring . . . [nonprofit agencies] wishing to maintain their qualification in the AbilityOne Program to certify that they will not pay subminimum wages under a section 14(c) certificate on contracts are not substantial and are outweighed by the benefits.” Analyzing the data, the NPRM states that the proposed rule will mean increased wages for 674 employees out of approximately 42,000 individuals with disabilities employed at AbilityOne nonprofit agencies. Paying fair wages to less than 700 employees with disabilities scattered all across the country will not be a hardship on any single nonprofit agency, especially when similar organizations working with similar populations are already actively employing workers with disabilities without the use of a subminimum wage certificate.
Additionally, we believe that the logical next step for these nonprofit agencies and the individuals with disabilities they employ would be to transition those individuals into competitive integrated employment.
We thank the AbilityOne Commission for taking up such an important topic and moving toward long overdue change to enhance the lives of people with disabilities.
News of the Portuguese parliament’s passage of a euthanasia bill was included in the November 6thMedical Futility Blog, mentioning that new language was deemed more precise than a previous version that had failed constitutional standards. Interestingly, the blog did not reveal the actual content of the new bill and linked only to a non-English article about it. Fortunately, a quick Google search led to an article quoting the details left out. It’s not surprising that some might want to hide this direct targeting of disabled people:
Rephrasing the ‘imprecise’
The rephrasing of the bill clarified the “imprecise” definition for when euthanasia would be possible after the Constitutional Court found that the bill’s previous reference to “a definitive injury of extreme seriousness in accordance with scientific consensus” lacked “indispensable rigor.”
The new version of the bill, which passed Friday, said euthanasia could be possible in cases of “serious injury, definitive and amply disabling, which makes a person dependent on others or on technology to undertake elementary tasks of daily life,” and where there is “very high certainty or probability that such limitations endure over time without the possibility of cure or significant improvement.”https://www.dw.com/en/portugals-parliament-approves-euthanasia-bill/a-59734995
President Marcelo de Sousa must still sign the bill for it to become law and is said to have reservations about euthanasia. Messages can be sent to him via his website, urging him to again refer this to the Constitutional Court. This time, the problem is not so much “precision” but rather disability discrimination. BTW, Portugal is one of the 162 States Parties to the Convention on the Rights of Persons with Disabilities. The President’s English language message form is here. [H/T Euthanasia Prevention Coalition]
On November 2, Newsweek published an excellent op-ed by Matt Valliere, Executive Director of the Patients Rights Action Fund (PRAF), entitled The Brutal, Tragic, Consequences of Quality of Life Judgements. Though PRAF’s mission is focused on opposing assisted suicide laws, the op-ed does an uncommonly good job discussing other discriminatory and harmful medical practices that are largely based on quality of life judgments and devaluation of people with disabilities.
The article begins by describing the Alta Fixsler case and the role of QALYs and DALYs (Quality/Disability Adjusted Life Years), specifically in the UK.
Alta Fixsler’s death was a brutal tragedy caused by ableist, utilitarian assumptions about a young girl’s “quality of life” by non-disabled people. The removal of life-sustaining care from a child with disabilities, based on prejudices about her disability, is unconscionable. Hospitals in the U.K. deny care to some children in the name of “saving” them from a fate worse than death. . . .
The U.K. attacks the dignity of certain people’s lives through the Quality and Disability Adjusted Life Years (QALY/DALY) tool. Using this metric, health officials argue that people like Alta no longer have lives worth living, and death is preferred. The real-world consequences mean that a person with expensive treatment or care needs will not be covered for treatments, based on the idea that a year of his or her life is worth less than a year of an otherwise non-disabled person’s life.
Valliere notes that this better-dead-than-disabled attitude is not unique to medicine:
This prejudice is not unique to medicine. It is immortalized and even celebrated in movies like Million Dollar Baby and Me Before You, in which people with disabilities are portrayed as heroic for killing themselves, because they “save” themselves, their family and society from the “burden” of their disabling conditions.
The article ties these prejudices to the infamous Michael Hickson case involving a Black and disabled man denied treatment for COVID, discriminatory Crisis Standards of Care, and the ongoing debate over public policies for assisted suicide. To read the full op-ed, please go here.
Marilyn Golden: An Unforgettable Legacy of Wisdom, Dedication, and Results
Diane Coleman
There’s been an incredible, powerfully moving and profoundly deserved outpouring of love and gratitude for Marilyn Golden since her passing on September 21st. Attending and sharing thoughts at her memorial service, I was again reminded of her amazing contributions to the accessibility of our country, from her pushing through the halls of Congress toward passage of the Americans with Disabilities Act (ADA) to the often thankless work of preparing public comments on proposed ADA regulations. As many of us who fought the battle for accessible public transportation know, Marilyn was the unsurpassed national expert on the technical policy issues that would determine whether disabled people would finally be able to get around in our communities like everybody else.
Anyone who follows Not Dead Yet also knows that Marilyn has been a mission critical partner in our work opposing assisted suicide laws. In the last decade, we sought each other out on assisted suicide policy education and advocacy activities to the extent that we were almost daily companions. I have more than 10,000 emails from Marilyn reflecting our invaluable and ongoing dialogue. Initially upon her passing, I found it hard to focus enough to say much more than that, but the work she did on NDY’s signature issue should not and could not be ignored.
She also actively opposed efforts in several states to legalize assisted suicide. She argued that such practices were fueled by a fear of disability — “the public image of disability is as a fate worse than death,” she said — and prejudice against it, citing “economic pressures of the health care system to relieve itself of its most expensive patients.”
“We are not opposing aggressive palliative care — that’s pain and comfort care — nor the right to refuse or withdraw medical treatment,” she added. “Nor are we opposed to the proper, narrow application of a treatment called palliative sedation, when death is truly imminent. We are only opposing more aggressive ways to hasten death,” like legalizing lethal injections or prescriptions of barbiturates.
“Because the public image of disability is as a fate worse than death, and because a disability can indeed bring about misery because of the lack of good support services . . . our societies have unfortunately become fertile ground for the forwarding of these laws,” she said in a 2008 speech. “Many have argued that these laws play directly into the economic pressures of the health-care system to relieve itself of its most expensive patients, and this can hardly be more true anywhere than in the United States.”
Over the years, Marilyn has trained countless disability advocates on the specific failures of purported safeguard in assisted suicide laws. She’s spoken before national, state and local audiences in person and via webinars. At least as importantly, she’s spent untold hours personally mentoring people with disabilities who have wanted to testify and advocate against a public policy of assisted suicide, often individuals with personal experiences of medical discrimination and neglect. Marilyn took the time to explain the failures of safeguards in these bills and to organize assisted suicide resources on the DREDF website to ensure that advocates had the tools to make their voices heard.
She has also personally testified against assisted suicide bills in numerous state legislatures as well as organized disability opposition in key states. Her writings on the subject include scholarly articles as well as numerous op-eds, and she served a central role in the National Council on Disability’s groundbreaking report on The Danger of Assisted Suicide Laws.
Marilyn Golden & Diane Coleman (2014)[Image Description: Marilyn Golden [left] in her manual wheelchair with brown curly hair, wire rimmed glasses, purple shirt, conference name tag, a briefcase in her lap, seated next to Diane Coleman [right] in her motorized wheelchair with gray and blond bobbed hair, wire rimmed glasses, blue patterned dress with white sweater, tapestry shoulder bag and slim briefcase to her side. Both are smiling and leaning toward each other. The year is 2014.]
It’s an honor to be asked to say a few words about Marilyn. We first met when I was a newbie to the disability rights movement, living in Los Angeles in the 1980s. It wasn’t long before we were both asked to serve on the California Attorney General’s Commission on Disability and, as she did for so many, Marilyn took me under her wing, mentoring and role modeling how to do the hard work, the precision efforts required to squeeze meaningful progress out of something too often designed to hold progress back. Her knowledge, skill and tenacious focus were always a force to be reckoned with. She got things done. I was arrested in the 1987 transportation access protest she mentioned in the video, I suspect she was too, but I hadn’t realized what a turning point those events were for her.
Beginning in the late 1990s, Marilyn also played a critical leadership role in disability advocacy against assisted suicide laws, starting in California. In this past decade, I had the privilege of working with Marilyn on an almost daily basis. Given the struggle for healthcare access and equity, neither of us viewed assisted suicide as a progressive cause. As the public policy fight expanded to many states, she was my closest companion in organizing disability advocates across the country, drawing from relationships built over her long career. She trained countless advocates on the specific failures of purported safeguards in assisted suicide laws, speaking before national, state and local audiences. As always, she mentored, she wrote, both scholarly articles as well as numerous op-eds for mainstream media. I’ll be sharing some of those on the Not Dead Yet website. She was also masterful when giving interviews. At one point, she composed these words to express her reasons for devoting so much of herself to this issue: “If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.” Her compelling words now appear on many Not Dead Yet information and training materials. Three years ago, the National Council on Disability contracted with her to do research for its groundbreaking report on The Danger of Assisted Suicide Laws which is distributed to policy makers as the definitive exposition on this subject.
We shared many commonalities in our approach to work, felt so much in synch on that level, that I find it hard to separate the personal and professional. I’ve been hearing today about quite a few non-work things Marilyn and I had in common but never discussed, being so focused on work. So thank you for that. I truly hope she knew how incredible her contributions have been and knew that we will keep her incomparable gifts, her legacy, alive in our hearts and minds.
Those things we almost never mentioned were science fiction, music from our younger days and favorite TV shows. I really wish we had. I can imagine the great fun we could have enjoyed over those things and I’m sorry we didn’t. Still, I’m so glad she made room for all those things and so much more in her beautiful life. Like so many in the disability community and beyond, I’m honored to have shared such invaluable time with her. She’s left an unforgettable legacy of wisdom and dedication on which we can all keep building.
About
Diane Coleman
[Image Description: Headshot image of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask with a white tube hanging downward.]
Diane Coleman is the President and CEO of Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia. Prior to that, she served for three years as Director of Advocacy at the Center for Disability Rights in Rochester, New York and twelve years as Executive Director of Progress Center for Independent Living in Forest Park, Illinois. Ms. Coleman has presented invited testimony four times before Subcommittees of the U.S. House of Representatives and Senate. She is a well-known writer and speaker on assisted suicide and euthanasia, and has appeared on national television news broadcasts for Nightline, CNN, ABC, CBS, MSNBC and others, as well as National Public Radio. She co-authored Amicus Briefs filed in the U.S. Supreme Court and various state courts on behalf of Not Dead Yet and other national disability organizations on the topics of assisted suicide and surrogate health care decision making. She has a law degree and Masters in Business Administration from UCLA. From 2003 to 2008, she was a member of the adjunct faculty at the University of Illinois at Chicago and co- taught two graduate courses in disability and medical ethics. Ms. Coleman is a person with neuromuscular disabilities who has used a motorized wheelchair since the age of eleven.
November 12, 2021
![Marilyn Golden [left] in her manual wheelchair with brown curly hair, wire rimmed glasses, purple shirt, conference name tag, a briefcase in her lap, seated next to Diane Coleman [right] in her motorized wheelchair with gray and blond bobbed hair, wire rimmed glasses, blue patterned dress with white sweater, tapestry shoulder bag and slim briefcase to her side. Both are smiling and leaning toward each other. The year is 2014.](https://i0.wp.com/notdeadyet.org/wp-content/uploads/2021/10/Marilyn-Diane.jpg?resize=353%2C265)
