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.”
[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.
November 12, 2021