NDY and Second Thoughts MA Activists Gathered Outside Supreme Judicial Court

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On October 13th, disabled activists from Not Dead Yet and Second Thoughts MA gathered outside of the John Adams Courthouse, home of the MA Supreme Judicial Court, for a peaceful leafleting action to show that the assisted suicide case of Kligler v Healey should be decided by the legislature rather than by a handful of judges. STMA members John B. Kelly, Ellen Leigh, and Pamela Daly, as well as NDY staff Anita Cameron and Jules Good, gave short speeches about the disastrous impact assisted suicide legislation has on the disabled community. Dozens of cars and pedestrians passed by during their time in front of the court house, with many stopping to read our signs or ask questions. 

A press advisory was issued prior to the protest. Boston Neighborhood Network (BNN) News ran a feature on the event, and also conducted an interview with NDY’s Assistant Director, Jules Good. The link to the feature can be found here, and the link to the interview can be found here. Both videos are also embedded below. 

Before the action, participants held a  moment of silence to commemorate the recent passing of MetroWest center for Independent living executive director Paul Spooner. Paul was a long time state leader in disability rights and the generous sponsor of second thoughts MA website.

NDY’s Amy Hasbrouck Speaks Out In Article On Canadian “MAiD Gone Wrong”

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NDY Board Member Amy Hasbrouck was quoted extensively in an article exposing the fact that disabled people in Canada are being granted euthanasia while being denied sufficient supports to live. The article is both linked and pasted below:

MAiD gone wrong: lack of access to supports cited in deaths

BY 
November 4, 2022

The Toujours Vivant-Not Dead Yet’s “MAiD Despite Questionable Eligibility” database does not yet include Sathya Dhara Kovac, a 44-year-old Winnipeg woman who revealed in her self-penned obituary that she used the MAiD system to end her life — not to hasten an imminent death or avoid intolerable suffering, but because she couldn’t get enough home care.

“Ultimately, it was not a genetic disease that took me out, it was a system,” Kovacs, who suffered from ALS (amyotrophic lateral sclerosis), wrote in the obituary she left for friends and family. “There is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive. I could have had more time if I had more help.”

A friend of Kovacs told the CBC Kovacs withheld from MAiD assessors that she was driven to seek a medicalized death by lack of adequate home care, knowing she would be denied if she spoke about it.

Kovac’s case is not unique, said Toujours Vivant-Not Dead Yet director Amy Hasbrouck. Her database of tales of MAiD gone wrong stretches to 55 names of people either killed in the official Medical Assistance in Dying system under questionable circumstances or who committed suicide in frustration with bureaucracy that could not or would not provide adequate supports or home care.

Access to home-based personal supports has been a major struggle for disabled people since long before MAiD became legal in 2016. As Canada debated the wisdom of legalized mercy killing, disability rights activists, including Hasbrouck and her Not Dead Yet network, argued that such a system would threaten disabled people by encouraging them to choose a state-sanctioned, medically certain death.

“At this point we’re sort of sitting here saying, ‘I told you so, I told you so, I told you so.’ But nobody wants to hear from us,” Hasbrouck said.

The database was assembled from media reports as “none of this information is available through government sources,” Hasbrouck said.

Health Canada denies that anybody is receiving MAiD because they can’t access disability supports or quality palliative care.

“In the course of advancing a request for MAiD, a person may indicate the absence or insufficiency of social support. However, there is no evidence that a person would be assessed as eligible for MAiD by two independent practitioners if the assessors had reason to believe that the person’s grievous and irremediable medical condition and associated suffering caused by that condition could be relieved on a sustained basis by access to reasonable and available treatment and social services,” Health Canada spokesperson Natalie Mohamed told The Catholic Register in an email.

“Yeah, well that’s (BS),” Hasbrouck responded. “It was (BS) seven years ago and it’s (BS) now. Every one of these cases (in the database) points out how what they’re saying is not true.”

The database includes Sean Tagert, a 41-year-old B.C. man with ALS who tried and failed to get the 24-hour at-home support he needed to function. Thirty-five-year-old father Chris “Birdie” Gladders from Hamilton, Ont., is on the list. He suffered from Fabry’s disease, which cancels the body’s ability to break down a specific type of fatty acid. During COVID, he ended up at a  retirement home where he was left alone in his room with bedding unchanged for weeks and no ability to get to the toilet on his own. He qualified for MAiD last year.

Since February, when MAiD became legal by reason of disability with no imminent prospect of death, Hasbrouck’s fears have only deepened.

According to the Third Annual Report on Medical Assistance in Dying in Canada, MAiD accounted for 3.3 per cent of all Canadian deaths in 2021. Year after year MAiD deaths have inched up. If MAiD was counted as a cause of death by Statistics Canada, it would have been the 10th leading cause of death in 2018. In 2019 it was the ninth leading cause of death. Then in 2020, despite the onset of COVID, it was the seventh leading cause of death.

“It (MAiD) is actually just a way of depressurizing the problems with social services,” Hasbrouck said.

Public exposure of the cases where MAiD has been administered when people’s greatest challenge was not their disease but their access to health and social supports is critical, said Hasbrouck.

“We knew that this was going to happen and here it is happening. … We need to backpedal on this idea that killing people is a good idea.”

DREDF Files Amicus Brief On Behalf of 12 Disability Groups In Euthanasia Case

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The Disability Rights Education & Defense Fund Just Announced:

DREDF Files Amici Brief in Case Seeking to Eliminate Key Safeguard in California’s End of Life Options Act.

On October 24, 2022, DREDF filed a brief as amicus curiae (PDF) on its own behalf and on behalf of 11 additional disability rights organizations in support of the defendants’ motions to dismiss the claims forwarded in Shavelson et al., v. California Department of Health Care Services et al. The proposed class action case, which we have written about previously, seeks to eliminate the self-administration requirement of California’s End of Life Options Act (EOLA), the Act’s most essential and fundamental safeguard by characterizing it as a “reasonable accommodation” under the Americans with Disabilities Act.

The brief of Amici provides the Court with the perspective of the class of people who will be most adversely impacted if ELOA’s self-administration requirement is eliminated or circumvented – people with disabilities. The brief discusses how assisted suicide laws discriminate against people with disabilities, degrade their value and worth, and put them at higher risk of discrimination and abuse. Where states have nonetheless authorized this practice, like California, it is critical that existing statutory eligibility requirements, particularly one as fundamental as the self-administration requirement, be preserved.

The brief also discusses how California’s self-administration requirement reflects a sound legislative judgment that no person’s life should be ended unless they are fully committed to ending it – something that can never be truly clear unless they complete the act themselves. In other words, the self-administration requirement secures an essential moral and legislative line between assisted suicide and euthanasia.

————

Organizations signing on to the brief include: Disability Rights Education and Defense Fund, American Association of People with Disabilities, Association of Programs for Rural Independent Living, Autistic Self Advocacy Network, Autistic Women and Nonbinary Network, Disability Rights Legal Center, National Council on Independent Living, Not Dead Yet, National Organization of Nurses with Disabilities, Patients’ Rights Action Fund, United Spinal Association and World Institute on Disability.

Lisa Blumberg: Promoting the Better Dead Than Disabled Ethos to Kids

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Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

Canada has the broadest euthanasia law in the world. Both people who are ill and people who have disabilities deemed to cause them to suffer may request that a doctor or nurse practitioner provide them with a drug induced death. (1) Alan Nichols, a 61-year-old man with a history of depression was euthanized, over the strong objections of his family, after he listed hearing loss (which he acquired at twelve) as the medical reason for his request.

His euthanasia implies nothing about what it is like to have hearing loss – people with impaired hearing, like everyone else, lead varied lives – but it speaks volumes about the failure of Canada’s safety net. “Alan was basically put to death,” his brother said.  (2)

There were more than 10,000 deaths in Canada by euthanasia last year, an increase of about a third from the previous year. The association of Canadian health professionals who provide euthanasia advises physicians and nurses to inform patients if they might qualify to be killed, as one of their possible “clinical care options.” (3) Indeed, people with disabilities who have been hospitalized and their families have reported instances where hospital staff have brought up euthanasia even though the individuals had not indicated a bit of interest in it. (4) Canada is a textbook example of how society’s thinking “evolves,” to use Prime Minister Justin Trudeau’s term (5), once assisted suicide and euthanasia is legalized.

Into this milieu, the Canadian Virtual Hospice has produced a colorful, soothing activity book for kids ages six and up to help them cope with the euthanasia of someone they know. (6) Whether intentional or not, the book encourages the youngest members of the public to think that in some or many instances it is better to be dead than disabled and it is reasonable for medical providers to act accordingly. This 26 page book refers to disability twelve times. (7)

Entitled Medical Assistance in Dying (MAID) Activity Book, the book calls the death inducing drugs “medicine” and never uses the term euthanasia. Yet it is candid in stating that “A doctor or nurse practitioner (a nurse with special training) uses medicines to stop the person’s body from working.” The person is given three drugs by IV. The first calms them. The second puts them in a coma. The third is what does it. The book states, ‘the third medicine makes the person’s lungs stop breathing and then their heart stops beating…When their heart and lungs stop working, their body dies. It will not start working again.” (8)

As for the end of the process, “once the MAID provider has checked everything and they are sure that the person has died, they will leave the room to fill out some papers. Then they will pack up their supplies and leave….” (9)  It all seems so ordinary and mundane, almost as if a visiting nurse has given grandpa a blood pressure check, chatted a bit and then gone to the next house.

Kids are asked to make their choices. Do they want to be in the room where it happens, in the next room or somewhere else? If they are not there, how do they want to be notified? Do they want to see the body or get a photo? (10)

They are assured that euthanasia does not hurt. (11) There seems to be no conclusive evidence though either way as to whether it may involve pain. Brain and heart monitors are not used and since the person is given paralyzing agents, distress may be masked. (12)

The book makes the dubious statement that “no one can cause another person to have so much pain and suffering that they choose MAiD.” (13) No indication is given that some people can be made to feel like a burden, or steered or coerced towards this awful decision. The authors seem not to have heard of elder abuse. Their view is perversely Pollyannaish. Kids are encouraged to talk about their feelings about an impending euthanasia, but missing is any suggestion that if the child truly thinks the person is being bullied or steered, they should take their concerns to someone on the outside like a trusted teacher.

It would, of course, be wrong to place on a six-year-old the responsibility to talk an adult down from dying by euthanasia. Yet kids can be told that some people get quite sad when they are very worried about how to manage things in their daily lives or thinking about expenses and that there is much other people and the community can do to help.

The nub of the book for me and what I think underlies its biased nature are the authors’ explanation as to why an ill or disabled person would gravitate towards euthanasia. According to the book, “people might ask for MAID if their illness or disability will not cause their body to die, but it causes too much pain or suffering for them to keep living with it, and there is no way to make the illness or disability get better or go away…some things still cannot be cured, and some pain and suffering cannot be taken away. This is no one’s fault.” (14)

The language may be simplified for the audience but this is just the medically oriented better dead than disabled viewpoint taken to its logical conclusion. It reflects the tired idea that a disability in and of itself defines and perverts a person’s life. If a person’s disability is permanent, they are up a creek without a paddle as long as they are in this world. Voluntary euthanasia is seen to offer them a way out. However, this doesn’t explain the euthanasia of Sean Tagert, a 41-year-old with ALS, who was quite explicit that he was “choosing” this path because he could not obtain the funding for a few extra hours of daily aide support that he needed to be able to stay at home and continue to participate in the raising of his beloved young son. (15)  

To put it charitably, this is an egregious failure of the imagination on the part of the Canadian Virtual Hospice.

It is speculative whether the book might impact a child’s perception of a person with a disability or illness they meet in daily life. It is speculative whether the book might motivate a child to suggest “MAID” to grandma when she complains about her knees. It is speculative whether the book would influence a child who feels hopeless to give up or would make a child who identifies with having a disability herself feel devalued. Also speculative is what effect it might have on the healthcare consumers and policymakers of tomorrow.

It can be asserted though that the better dead than disabled ethic is inimical to inclusion, respect for diversity, problem solving in dealing with adversity, and horror at taking lives – values 21st century kids need to succeed.

The Canadian Virtual Hospice has produced some constructive resources on dealing with illness but the Medical Assistance in Dying (MAID) Activity Book seems little more than propaganda that may even sway adults. The organization needs to do some hard thinking on the precepts they want to promote.

They should be aware that even though euthanasia is allowed under Canadian law, United Nations Human Rights experts have raised serious questions on whether the law has a discriminatory impact on disabled people and is inconsistent with Canada’s obligations to uphold international human rights standards. (16)

FOOTNOTES

  1. https://apnews.com/article/covid-science-health-toronto-7c631558a457188d2bd2b5cfd360a867

  2. Ibid.

  3. Ibid.

  4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6882029/

  5. https://nationalpost.com/pmn/news-pmn/canada-news-pmn/trudeau-defends-use-of-two-planes-calls-tory-criticism-a-far-right-tactic

  6. https://www.virtualhospice.ca/maid

  7. https://www.virtualhospice.ca/maid/media/3bdlkrve/maid-activity-book.pdf

  8. Ibid., pg. 1,4

  9. Ibid.,pg. 23

  10. Ibid., pp. 12-14

  11. Ibid., pg. 4

  12. https://nationalpost.com/news/canada/medical-assistance-in-dying-how-do-people-die-from-maid

  13. https://www.virtualhospice.ca/maid/media/3bdlkrve/maid-activity-book.pdf 5

  14. https://www.virtualhospice.ca/maid/media/3bdlkrve/maid-activity-book.pdf 5-6

  15. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6882029/

  16. https://spcommreports.ohchr.org/TMResultsBase/DownLoadPublicCommunicationFile?gId=26002 https://apnews.com/article/covid-science-health-toronto-7c631558a457188d2bd2b5cfd360a867

Media Advisory: Disability Rights Advocates Gather at SJC to Defend Disabled Lives

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***MEDIA ADVISORY***

Disability Rights Advocates Gather at SJC to Defend Disabled Lives

Boston, MA – Thursday, October 13 at 12 PM, Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide and Not Dead Yet will gather outside the Supreme Judicial Court at the John Adams Courthouse to remind the SJC and the public that the issue of assisted suicide belongs in the legislature, just as the Suffolk Superior Court recommended in its dismissal in Kligler vs. Mass.

Second Thoughts Director John B. Kelly said, “Neither the U.S. Supreme Court nor any state high court has found a constitutional right to assisted suicide. The prohibition against assisted suicide protects the lives of disabled people.”

Not Dead Yet Director of Minority Outreach Anita Cameron said, “Black people overwhelmingly oppose assisted suicide and don’t use it. As doctor assisted suicide laws become normalized across the country, racial disparities put Blacks at risk of denial of care and early death.”

Not Dead Yet Assistant Director Jules Good said, “After Canada’s Supreme Court ruled that assisted death is a fundamental right, legislation and more court decisions have led to the euthanizing of disabled people who lack care, safe housing, and social supports. The Court must not legalize a practice that further endangers people who are already vulnerable.”

Second Thoughts member Ellen Leigh said, “I supported assisted suicide until I learned that it is all about disability – the top five reasons in Oregon involve depending on others, feeling like a burden, and shame – ‘loss of dignity.’ We all have inherent dignity and do not lose that when we become ill and disabled. Bringing ‘dignity’ into this only increases feelings of shame and burden for choosing to live.”

Speakers will show:

  • Assisted suicide, as leading proponent bioethicist Thaddeus Pope conceded, “is all about disability.”

  • Well-educated upper class white people are the drivers of assisted suicide. Marginalized people in MA and across the US oppose assisted suicide, and legalizing it ignores our perspectives and needs.

  • Palliative care, including palliative sedation when necessary, is already legal to relieve pain and other suffering in a way that does not pose such a risk to vulnerable people. Assisted suicide isn’t needed.

WHEN: Thursday, October 13, 12 PM-1 PM
WHERE: 1 Pemberton Square, outside the John Adams Courthouse, intersection of Somerset Street and Ashburton Place.

VIRTUAL: Facebook Live Link will start streaming at 12 PM noon.

Second Thoughts MA organized in 2012 to contest the 2012 Ballot Question 2 for the legalization of assisted suicide, which we helped defeat. We have successfully lobbied against every assisted suicide bill since.

Not Dead Yet is the leading national disability organization opposing assisted suicide laws, futility judgments, and “better dead than disabled” policies. The group organized in 1996 to help stop Kevorkian, whose victims were overwhelmingly disabled and not terminal.

For more information, please contact Jules Good (mailto:JGood@NotDeadYet.org) or John Kelly at mailto:SecondThoughtsKelly@Gmail.com. 617-952-3302 

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