[Belatedly sharing good news from Inclusion Canada]
PRESS RELEASE: Disability Rights Coalition Challenges Discriminatory Sections of Canada’s Assisted Dying Law in Court
September 26, 2024, 10:30 a.m. ET
TORONTO, ON – A coalition of disability rights organizations and two personally affected individuals have filed a Charter challenge with the Ontario Superior Court of Justice. They oppose Track 2 of Canada’s Medical Assistance in Dying (MAiD) law, which provides assisted suicide to people with a disability who are not dying, or whose death is not “reasonably foreseeable.”
The coalition includes national disability organizations Inclusion Canada, the Council of Canadians with Disabilities (CCD), Indigenous Disability Canada (IDC/BCANDS), and DAWN Canada, as well as two individuals who have been harmed by Track 2 MAiD.
The organizations assert that Track 2 MAiD has resulted in premature deaths and an increase in discrimination and stigma towards people with disabilities across the country. While they are not challenging MAiD Track 1 in this case, they recognize that it too can pose significant problems for people with disabilities. Track 2 MAiD has had a direct negative impact on the lives of people with disabilities.
The coalition is urging the court to strike down Track 2 of Canada’s MAiD law, arguing that providing assisted death solely on the basis of disability is unconstitutional. They contend that MAiD should only be available to people whose natural death is reasonably foreseeable.
“People are dying. We are witnessing an alarming trend where people with disabilities are seeking assisted suicide due to social deprivation, poverty, and lack of essential supports,” said Krista Carr, Executive Vice-President of Inclusion Canada. “This law also sends a devastating message that life with a disability is a fate worse than death, undermining decades of work toward equity and inclusion. It’s time to put an end to helping people with disabilities commit suicide and start supporting them to live.”
“This challenge is about protecting the equality and human rights of all people with disabilities in Canada,” said Heather Walkus, National Chairperson of the CCD. “Instead of providing the support and resources we need to live, our government is offering death. It’s unacceptable, and we won’t stand for it.”
“Indigenous Peoples and communities across Canada face higher rates of disability, poverty, and isolation while continuing to battle significant barriers when attempting to access disability and health services and supports necessary for their well-being,” addedNeil Belanger, CEO of IDC/BCANDS, “Understanding this, this law is not just discriminatory; it reinforces the ongoing marginalization of Indigenous Peoples with disabilities.”
“30% of all women in Canada live with a disability,” said Bonnie Brayton, CEO of DAWN Canada. “Women and gender-diverse people with disabilities experience the highest rates of gender-based violence and poverty and we do not have access to health care, as the heartbreaking stories of the two individual plaintiffs in this case demonstrate. We want access to housing, to health care and to be free of violence and instead, we are accessing MAID at the highest rates. This law is a betrayal of our most fundamental rights”
The coalition has launched a Charter challenge against Track 2 MAiD and looks forward to the court defending the rights of people with disabilities in Canada.
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More information:
The coalition is represented by a legal team led by Joanna Birenbaum of Birenbaum Law and David Rankin of Osler, Hoskin & Harcourt LLP. The case is expected to draw significant attention from disability rights advocates, healthcare professionals, and policymakers across the country.
Award Winning English Actress and International Disability Rights Activist Liz Carr to Appear
Liz Carr
Washington – Many are familiar seeing Liz Carr in various television and streaming roles (BBC: Silent Witness, Prime Video: Good Omens, Netflix: The Witcher, Marvel’s Loki: Disney +) and the Big Screen (Infinite), but in her documentary “Better Off Dead?” she goes behind the camera as a long-time disability rights activist to examine whether allowing assisted suicide puts the lives of people with disabilities at risk. In her remarkable documentary, Liz travels to Canada, which has the most permissive assisted suicide laws, allowing not only people with supposedly terminally illnesses to use assisted suicide, but also people who are disabled and suffering social deprivation. In a society where disabled people are often considered “better off dead,” she asks the fundamental question, “Should we really be giving more power to end that group of people’s lives?”
WHAT: Screening of the 58-minute Liz Carr documentary, “Better Off Dead?”
WHEN: Wednesday, September 18th (6 pm) & Friday, September 20th (10:30 am).
WHERE:
9/18: Capitol Visitors Center, US Capitol. HVC 201, 6 pm. Reps. Lou Correa (D-CA) and Brad Wenstrup (R-OH) will provide remarks. Wenstrup and Correa introduced a resolution “expressing the sense of Congress that assisted suicide puts everyone, including those most vulnerable, at risk of deadly harm.” This event is limited to Members of Congress, their staff, agency staff, and the press. Advanced registration required: https://www.eventbrite.com/e/better-off-dead-a-documentary-screening-with-liz-carr-tickets-1007817738987
9/20: Martin Luther King, Jr. Memorial Library – Central Library, 901 G Street, NW, WDC 20001, 5th Floor Event Room, 10:30 am – 2 pm. After the screening there will be a panel* discussion including Carr. Advanced registration is required: https://dclibrary.libnet.info/event/11700177
Interviews: Carr will be available for interviews throughout her Washington visit, with availability September 18-20. To Schedule an interview contact: Bianca Ngala (bngala@apcoworldwide.com)
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* Panelists include NDY UK member Liz Carr and NDY USA former Board member Dr. Shonda McLaughlin, Ph.D.
Trisomy 18 is a genetic condition that usually results in physical health problems and cognitive limitations. Life expectancy is currently shorter than typical but people can live into their 20’s and 30’s and one American with trisomy 18, Megan Hayes, celebrated her fortieth birthday with fanfare. Unfortunately, it seems that this information has been slow to percolate down to medical professionals.
When Simon Crosier was born in 2010, he was given full care until he was diagnosed with trisomy 18 at three days old. His parents, Sheryl and Scott Crosier were then told, “your child is now incompatible with life.”
This phrasing is ambiguous. Did Simon have an irretrievably, quickly, fatal condition or was he “now incompatible with life” due to the mere fact of his diagnosis and hospital procedures regarding it? The hospital had a futility policy that the Crosiers assert they did not learn about until after the fact.
The Crosiers had to fight with medical staff who shut off his heart monitors and refused to give him breathing treatments. Rather than give Simon breast milk which Sheryl was pumping conscientiously, nurses used a syringe to put drops of non-nutritious sugar water in Simon’s mouth to quiet him when he got fussy. This was so-called comfort feeding designed to have Simon wither away from starvation. Sheryl had to beg to have him fed breast milk.
Let’s pause right here – it seems Simon was capable of some swallowing, and he was conscious. Unconscious people do not get fussy. If a baby was restricted to “comfort feeding” in any other setting, the responsible party could be charged with extreme abuse.
On that awful day when Simon’s oxygen levels plummeted, the Crosiers say the NICU staff did nothing. Simon died. He was three months old. The Crosiers obtained his medical records and found out about the hospital’s futility policy and that his doctor had placed a do-not-resuscitate order as well as an order for only “comfort feeding” in his file. The Crosiers maintain that none of this had been discussed with them. They had wanted everything done for their son.
Scott would later say of futility policies that “hospitals are making business decisions when the lives of our children are at stake” and he’s right.
This was a classic case of lethal denial of sustenance and medical treatment based on disability.
Since Simon’s death, Sheryl Crosier has spearheaded legislation to prohibit a do-not-resuscitate order from being placed in a minor child’s medical chart without a parent’s or guardian’s knowledge or consent. Versions of Simon’s Law have been enacted in twelve states and now H.R. 6344, the Simon Crosier Act, has been introduced into Congress. This bill requires hospitals and other health care providers, as a condition of Medicare and Medicaid participation, to have certain written policies and procedures in place that limit the implementation of do-not-resuscitate (DNR) orders for unemancipated minors.
The bill provides in pertinent part that “Either parent . . . may refuse consent for a do-not-resuscitate order or similar physician’s order . . . The provider shall not have the authority to require the withholding or withdrawal of life-sustaining procedures from an unemancipated minor over the objection of the parent or legal guardian, unless . . . the minor has died. There shall be a presumption that the continuation of life is in the minor’s best interest.”
The bill would also require a hospital to provide its policies regarding withdrawal of life sustaining treatment, including any futility policy it may have, to a parent or legal guardian upon request.
In politics, it unfortunately matters how an initiative is framed. H.R. 6344 has been depicted as a parental rights initiative. Without taking anything away from parent advocates, the bill should be seen first and foremost to concern disability justice and health care equity issues.
As noted in an earlier blog, in our public comment on the update to the 504 regulations by the Department of Health and Human Services, we included a case documented in the National Council on Disability’s report on medical futility and disability where doctors gave parents of an infant with trisomy 18 misleading information about the child’s survivability. They did this to induce the parents to consent to the withholding of treatment. The Department affirmed that this type of scenario would amount to unlawful discrimination under Section 84.56. They also indicated that a treatment could only be deemed futile if it was clear that it could not achieve its physiologic effect without regard to the person’s disability. Of course, adults as well as kids have often been subjected to discriminatory futility policies.
By focusing on the unilateral imposition of do-not-resuscitate orders, H.R. 6344 or a similar bill would be a welcomed tool in our struggle for equal access to health care. Disability groups must be heavily involved in its final drafting and in presenting it as a bi-partisan measure.
Start the morning with a screening of the acclaimed 2024 BBC Documentary Better Off Dead?, followed by a panel discussion with English actress and international disability rights activist Liz Carr. Refreshments will be served after the discussion.
*Accessibility notes: ASL interpretation will be provided throughout the event. Open captions will display on screen for the film. CART will be provided for the panel discussion.
For any other reasonable accommodations, please include details in the registration form, or contact the Center for Accessibility at DCPLaccess@dc.gov or 202-727-2142.
This program is presented with support from the Patients Rights Action Fund, National Council on Independent Living, Not Dead Yet, United Spinal Association, and the American Association of People with Disabilities.
About Liz:
Liz Carr is an English actress and international disability rights activist who lives in London, England with her wife Jo and her 19 year old cat, Ella Fitzgerald. A lead actor in the BBC’s flagship forensic drama Silent Witness for 8 seasons, Liz is also known for the regular characters she portrays in the Prime Video series Good Omens, Netflix’s The Witcher,and the Marvel series Loki. She can be seen alongside Mark Wahlberg in Infinite, the Paramount thriller by the renowned director Antoine Fuqua. On stage, in 2022 Liz won an Olivier award (The UK equivalent of the Tony awards) for her performance in critically acclaimed, The Normal Heart at the National Theatre.
In May 2024, Liz authored a highly anticipated BBC documentary, Better Off Dead? exploring why she and many other disabled people oppose legalising assisted suicide and euthanasia. She is not religious but instead, her objections are based on a disability rights and social justice perspective, a perspective that Liz and others believe has been ignored by the media. Until now.
This documentary is the culmination of over 15 years of activism; in 2012 Liz visited all the countries where assisted suicide was then legal for a two part BBC World Service radio documentary called, When Assisted Death is Legal. She wrote and performed in the sold out show, Assisted Suicide: The Musical and she has spoken on this subject on radio, in TV debates and at events all over the world. Better Off Dead? has already been nominated for a prestigious UK documentary award, a ‘Grierson,’ for best science documentary.
Two weeks ago I went to the ER in extreme pain. Normally, I live with level ten pain. I’ve gotten used to it. In a flare, I’ve learned not to moan or cry out.
But this pain, which started out as a small annoyance, spread and went down my spine, then, into my chest and abdomen, became unbearable. I had to go to the ER.
I’m usually treated as a drug seeker when I go in, even though I’m allergic to all opioids and opiates. But blood tests showed cardiac enzymes in my blood and they admitted me.
While in hospital, I experienced a frightening event. My pain level was so high that it caused my blood pressure to skyrocket to 240/120. The pain was so bad that it was literally putting stress on my heart and my heart was about to give out. There were at least 10 doctors and nurses in the room, working to get my pain level, and thus, my blood pressure, down. In desperation, doctors decided to give me Dilaudid, a medication that I am allergic to, and Benadryl, than risk me having a heart attack.
I didn’t realize pain could do that to one’s body.
Even with the unrelenting pain that I have been going through, I still don’t want to die. I want my doctors to think outside the box, as they did that day. They tried other pain meds, which did nothing, then, made the decision to give me a pain medicine that I’m allergic to because they could deal with the allergic reaction; they could not deal with me having a heart attack.
If people are afraid of dying in pain, why not fight for better access to pain management and palliative care so that this won’t happen? This tells me that it’s not about dying in pain, it’s about the right to die, itself, and the proponents are so into themselves that they cannot recognize that assisted suicide laws put people in danger. The right to die becomes the duty to die, especially if you are from a marginalized community.
Now, having experienced pain that can take my life, I’m on a mission to keep that pain at bay. But, in doing so, I’m exposing myself to the racist practices of pain clinics that refuse to prescribe opioid and opiates to their patients. Black women, especially, are not given correct amounts of effective pain medications to manage our pain. I asked my doctor to indicate in my records that I live with pain, and what happened when the pain got too bad. It was explained to me that until I’m assigned a doctor, no one will see that information, meaning that as usual, because I’m Black, I’ll be treated as a drug seeker even though I’m allergic to almost everything.
Why do assisted suicide proponents fight for assisted suicide while saying that they support palliative care and pain management? Because once again, it’s not about pain or the fear of it. It about the right to die. They use fear of pain as the catch, to bring you in because nobody wants to die in pain, but it’s really about them not wanting to be disabled because they feel that is undignified. They don’t want to live the life of being disabled, so they use pain as an excuse to push their right to die agenda.
Even as I was going through this incredible pain, I wasn’t thinking, “let me die”. I was thinking, “stop this pain so I don’t die”! I was literally thinking, “I don’t want assisted suicide, I want pain-free, or at least, manageable pain that can be addressed.”
When whole communities of marginalized people aren’t getting the healthcare we need, access to pain treatment that isn’t steeped in racism, and cardiac, diabetes, cancer and other treatments that aren’t steeped in racism, how can you support assisted suicide?
As this is normalized, meaning more and more states pass assisted suicide laws, we’re going to see a frightening trend of marginalized people requesting assisted suicide because they were “convinced” that it’s a good thing by family members or doctors.
As long as there are marginalized communities who deal with healthcare disparities, there is no place for assisted suicide anywhere in this country.
