Americans with Disabilities Act - 34th Anniversary.

By Meghan Schrader

Meghan Schrader

Meghan is an autistic person who is an instructor at E4 - University of Texas (Austin) and an EPC-USA board member.

It’s disability pride month in the United States, when the disabled community is celebrating the 34th anniversary of the 1990 signing of the Americans with Disabilities Act. As with countries around the world, the experience of being a disabled citizen is a mixed bag. As a disabled American, I personally think of America as the equivalent of a dysfunctional family member-like a brother, mother, aunt, cousin, etc. who you know has a drinking problem and has been in and out of rehab, but for whom you have great admiration and hope as well, because they’re your family and you’ve been there to experience their triumphs & good qualities. I think that’s probably the right approach-recognizing the country’s problems but also working with hope to make the country better. 

One example of a recent improvement for disabled people is that Florida just legalized Supported Decision Making, an alternative to guardianship where disabled people retrain the right to make their own decisions, but with a team of support people that the disabled person chooses. Another important change that occurred recently was the updated Section 504 regulations that require that doctors and politicians not make policy or medical decisions based on the dehumanizing premise that disabled people’s lives are not worth saving. Among other improvements to the medical system, this would seem to preclude policies that facilitate disabled people’s suicides or forced DNRs. That’s very important progress.

But, the deep ableism in the world continues to wound, demoralize and oppress people with disabilities. For instance, in addition to California senator Blaspear ‘s failed bill to subject that state’s disabled community to a Canada-like euthanasia law, Democrat governor Gavin Newsom spearheaded Proposition 1, which, instead of funding community mental health treatment, gives the state an inappropriately high level of latitude to institutionalize mentally ill people against their will. The Republican National Convention recently denied the American Association of People with Disabilities request for accommodations at the Republican National Convention. When asked by 90 disability rights organizations to make the recent presidential debate accessible to disabled people and to integrate disability rights issues into the debate questions, CNN merely gave instructions on how to turn on the captions on a TV. That means that issues pertaining to things like better opportunities for students enrolled in Special Education, intersectional disability justice, sub-minimum wages, marriage penalties for SSI recipients, deinstitutionalization, various Supreme Court cases, and life-threatening medical discrimination against disabled people were not addressed by the candidates and were not visible to the greater populace. 

The long-standing pattern of disabled people being invisible to our culture that many people don’t mind if we die was maintained. During the debate the American Association of People with Disabilities posted on X, “Assisted suicide is eugenics, and should never be praised or considered a viable alternative to providing disabled people with comprehensive, high-quality affordable medical care. #CripTheVote.” But, of course the debate did not address that issue, because the ongoing influence of eugenics on our culture means that disabled people are invisible. To many people, disabled people aren’t really a marginalized group, and we aren’t worth including in a vision for America.

Because of this oppression, many disabled people are so demoralized that they have a tough time celebrating disability pride month. Disability justice leader Alice Wong posted on X, 

“This July is the 34th anniversary of the ADA and it is beyond disappointing how little has changed. We still have to fight for the right to be in public spaces and live in the community instead of institutions. I am not in a celebratory mood.” 

Disability rights attorney Gregory Mansfield posted on X, 

“It is infuriating that, 34 years after the passage of the Americans With Disabilities Act (ADA), cities are still developing transition plans to comply with it. It amounts to another generation of exclusion of disabled people.”

Generally, I’m with Alice and Gregory. I haven’t given up hope for our country or the world, but the extreme prejudice that disabled people face is exhausting and pisses me off. As disability rights icon Judy Heumann said in the 1970s, 

“I’m tired of being grateful for accessible toilets.” 

Yes, that. I am tired of disabled people being expected to be grateful for having crappy jobs. I am tired of disabled people having to be grateful for just being in a general education classroom or graduating from high school. I am tired of disability history being invisible. I’m tired of disabled people being the victims of interpersonal violence. I am tired of disabled persons having to justify our existence to bioethicists, to the mainstream media and to legislators worldwide. It makes me mad that in 2024, disability justice advocates are still having to spend our time opposing neo-eugenic ideas from Ancient Rome and the 1930's.

So, I find myself thinking back to my first annual meeting of the Society of Disability Studies in 2011. At the SDS community dance that happens at the end of the conference, the DJ played the song, “We Are Family.” And, as I interacted with so many other people who also had atypical bodies, and were also passionate about disability justice, it really felt true. SDS was one of the first environments where I felt fully accepted as a disabled person. I’ve found a similar environment at my current job, where students and teachers work together to help each other pursue dignity and happiness.

Therefore, as I’ve said in some of my other posts, I think the disabled community needs to embrace a philosophy of “chosen family,” to survive the ignorance that we endure. I think that community with one another, and with people of all abilities, is one of the best ways for disabled people to lead dignified and joyful lives in a society that often makes it hard to experience a sense of pride during disability pride month. And, I believe that people of all backgrounds have the potential to collaborate to improve the social condition of disabled people, on the premise that we are all members of a “human family.”

Heather's story of being pressured to "choose" MAiD.

"I am not you, and you have no right to push me to accept MAiD. I will never accept it! My life has value and no human being has a right to say otherwise." 

Heather Hancock

By Heather Hancock, an author and editor.

I've spent every moment from my first breath to the one a second ago fighting for what others take for granted. Why? I have Spastic Cerebral Palsy and have been labelled by doctors, teachers, therapists, lawyers, and society in general, as a second class citizen.

I live in Canada on the vast open prairies of Saskatchewan, but this province has only been my home for the last 5 years. I was born in Calgary, Alberta before there were NICUs and I weighed a whopping 1 pound 6 ounces at twenty-five weeks gestation. I should have died with less than a 2% chance of survival, but I was breathing on my own. There's no medical explanation for it... but God.

I was diagnosed with Cerebral Palsy when I was two. The doctors solemnly told my parents to put me into an institution for the rest of my short life as I "would never amount to anything." The medical community was in agreement that all disabled children were also retarded. A trip to the University of Alberta put an end to that false assumption.. At the age of three, I had the IQ of a five-year old. My disability is purely physical.

I was the first disabled child mainstreamed into the Calgary public school system. It was great for my education, but not for my social life. Fear and ignorance resulted in years of bullying and being ostracized by my peers and a few teachers. I graduated with Honours in 1986. Intermixed with all of this were multiple surgeries and regular physiotherapy appointments.

My adult life has been spent fighting for equity and accessibility in the workplace and the relentless toll that spasticity takes on the physical body. Chronic pain and fatigue became my new companions and I lost the ability to walk independently at thirty-three. The losses continued and by forty-four, I had to medically retire, after a quarter of a century working as a Unit Clerk in hospitals on Vancouver Island. I turned to writing and discovered I could educate others about my life through fiction, nonfiction, and poetry.

In 2017, all of the muscles in my legs spasmed simultaneously from the hips down both legs to the tips of my toes, and then the muscles just kept tightening and tightening. I could not move from the waist down. There were subsequent episodes in 2018 and 2019.

In hospital, I discovered a change in the attitudes of nurses, doctors, orderlies, and therapists. There was a subtle undercurrent that was almost tangible. I had nurses neglecting me, forcing me to try and walk while they stood at a distance and watched with arms crossed. It was evident the medical staff preferred not to treat me.

During my second episode of what I termed "spastic paralysis," there were words given to provide a framework for what quality of life should look like. If a person failed to meet that standard, then pressure was applied to get the person to accept medical assistance in dying (MAiD). It's a deceptively comforting term for euthanasia. It's been legal in Canada since 2016. I was in Victoria General Hospital in 2018 and was approached by a hospitalist who asked me if I had ever considered MAiD, given the incessant level of severe pain and fatigue I lived with. I made eye contact with the doctor and said, "God gave me life and He is the ONLY One who knows the number of my days. The answer now and from this moment on is NO."

The third episode in 2019 landed me back in the same hospital on a different unit, but my bed was in the hallway for my entire stay. It was humiliating. Again I was offered MAiD, and that doctor was given the same reply. It was the last straw for me. My GP retired in 2016 three years of lack of care had taken its toll and I left the Island and moved to rural Saskatchewan about an hour west of the Alberta border.

A month after moving into the new house, I had a very bad fall which landed me back in hospital, only this time it was the regional hospital in Medicine Hat, Alberta. A neurologist diagnosed what was happening and targeted a muscle in my lower back with therapeutic botox. It took three weeks for full effect and during my stay, the nurses and some doctors were very condescending.

One nurse came to my bedside in the early morning hours before breakfast and asked me "to do the right thing and consider MAiD." Her next words still ring through my head... "if I were you, I would take it in a heartbeat. You're not living, you're existing!"

I replied, "I am not you, and you have no right to push me to accept MAiD. I will never accept it! My life has value and no human being has a right to say otherwise."

The nurse stormed off and the next time she answered my call bell, she simply sneered at me instead of helping me get to the bathroom with my walker. I was very unsafe and talked with the head nurse of the unit and had her removed from my care. She wasn't reprimanded as the head nurse said it was a "personality clash."

I've had three stays in three different hospitals in Saskatchewan, and so far, this province has not pushed MAiD on me or anyone else within range of my sight or hearing. It's a wonderful relief.

With our federal government trying to manipulate the members of the House of Commons to pass laws that would throw wide open the criteria so more of the sick, terminally ill, disabled, mentally ill, elderly, and other vulnerable minorities could be coerced into accepting MAiD, or be given it against their will. That's a horrifying prospect.

I am a human being. My life has intrinsic worth. I won't allow anyone to say otherwise. I wasn't supposed to amount to anything, but I was a unit clerk, and I am now a published author and an editor. Words are powerful and I intend to wield them until my last breath. My stories educate and entertain. My poetry is raw and brings the reader into my world as a person with a disability. I fight many battles on different fronts, but the right to life is sacred, and should be treated with dignity and compassion. Sadly, the majority of our society have forgotten how.

Good Samaritans Help, They Do Not Kill

By Meghan Schrader

Meghan Schrader

Meghan is an autistic person who is an instructor at E4 - University of Texas (Austin) and an EPC-USA board member.

In the last year I’ve read several articles in publications, that reliably oppose assisted suicide and noticed that some politicians who tend to oppose assisted suicide, asserting that Daniel Penny, a man who is charged with killing mentally ill BIPOC disabled men Jordan Neely when he was having a mental health crisis on the New York subway in 2023 a “Good Samaritan.” 

The case hasn’t been in the news as often lately and Penny will not stand trial for manslaughter until October, but I’ve been thinking about that tragedy a lot, and I figure now is as good a time as any to share my thoughts on why Daniel Penny is not a Good Samaritan.

When I say I’ve observed news outlets and politicians that tend to oppose assisted suicide calling Penny a Good Samaritan, I do not mean that all publications or politicians that take a position opposing assisted suicide or that most opponents of assisted suicide take that view, nor do I mean that publications that have published pro-assisted suicide material haven’t also expressed ableist attitudes toward Neely, or towards disabled people in general. Nevertheless, I feel the need to respond in particular to assisted suicide opponents who have called Neely a “Good Samaritan.” Although this is a blog about assisted suicide, I am a disability justice advocate first and foremost, and I’ve lived with mental illness for most of my life, so describing Daniel Penny’s actions as the actions of a “Good Samaritan” really bother me. I appreciate Alex Schadenberg allowing me to use this blog to get these thoughts “off my chest,” and I hope that they will be instructive for people reading the blog.

During my first bout of psychotic depression in 2016, I had to fly with my Mom to my biological mother’s funeral. During the flight I babbled that I was a rapist and a murderer. I screamed that I wanted to die, that the plane was going to crash and that it was all my fault. My limbs thrashed and jerked with involuntary muscle movements I couldn’t control-sort of like how Jordan Neely screamed that he was hungry and thirsty, threw his jacket on the ground, and allegedly yelled things like, “I’m going to kill you,” “I’m prepared to go to jail for life,” and “I’m willing to die.”

I am sure that my behaviour really sucked for the people sitting around me. But does that mean it would have been OK for a testosterone-flooded United States Marine to jump up from the seat behind me and put me in a choke hold until I died? Would that have made the Marine a Good Samaritan? That’s essentially the argument that I’ve heard some people make about Jordan Neely’s death: Daniel Penny was a “Good Samaritan” for killing “dangerous” Jordan Neely during a mental health crisis. And that argument is fallacious. Good Samaritans do not restrain severely mentally ill, hungry, disoriented people by putting them in choke holds until they suffocate. Good Samaritans do not live their lives feeling entitled not to encounter mentally ill people in public places, as some of the bystanders’ behaviour and statements about “fearing for my safety” indicate to me they thought they were.

Jordan Neely’s death fits into a longstanding pattern of BIPOC disabled people, and disabled people in general, being killed by the police or bystanders. For instance, Neely’s death reminds me of the case of Ethan Saylor, a 28-year-old man with Down Syndrome who was killed by off-duty police officers in 2013 because he tried to stay for a second showing of a film he had watched without buying a second ticket. The off-duty officers asphyxiated Saylor, all for the sake of an $8 movie ticket. And, although a medical examiner ruled Saylor’s death a homicide, the officers were not charged. People calling Daniel Penny a “Good Samaritan” want the same thing to happen in Jordan Neely’s case, apparently because that’s what fits into their preferred political narrative. But most political narratives do not account for the needs and experiences of disabled people, and that’s what’s going on when people call Daniel Penny a “Good Samaritan.”

Jordan Neely needed a Good Samaritan who would speak to him compassionately and “talk him down.” Jordan Neely needed a Good Samaritan to call his family. Jordan Neely needed a Good Samaritan who would have given him something to eat and drink. Jordan Neely needed a Good Samaritan who could have summoned medical help. That’s the Good Samaritan that Neely needed and deserved, and that’s the kind of person our leaders should rally behind as a “Good Samaritan,” not smug Ironmen like Daniel Penny.

Disabled people not only deserve the right to live in a society where their suicides will be treated like preventable tragedies, but also the right to ride the subway without the fear of being suffocated. Opposition to assisted suicide needs to involve a commitment not only to equal access to suicide prevention, but access to safe environments in general. It means advocating for disability justice more broadly. It means following the real Good Samaritan’s example of tending to a wounded man beat up by robbers, not Daniel Penny’s example of killing a mentally ill man who was hungry and thirsty.

So, EPC blog readers, get out there and be real Good Samaritans. Do whatever you can to ensure the well-being of the Jordan Neelys of the world, and couple with that with your opposition to assisted suicide. That’s the kind of Good Samaritan that the disabled community needs and is consistent with opposing assisted suicide.

Do “Death With Dignity” Advocates Care About People with Disabilities?

Meghan Schrader

By Meghan Schrader

Meghan is an autistic person who is an instructor at E4 - University of Texas (Austin) and an EPC-USA board member.

I don’t think that every assisted suicide supporter is an ableist; I think a lot of people are uninformed about the oppression that the disabled community faces on a daily basis and have no basis for understanding how their agenda could contribute to that oppression. It strikes me that there are assisted suicide advocates out there that earnestly intend to have assisted suicide without expanding it or otherwise harming people with disabilities.

However, assisted suicide is a life and death issue, so trust can only go so far. A lot of “death with dignity” advocates trying to “find common ground” with the disability rights movement say that they care about people with disabilities, but I don’t think that they do. Or, if they do, their concern is mixed with a self-serving motive to eliminate a threat to their agenda. From where I sit as a “Xennial,” someone who came of age in the early 2000s, people who love to virtue signal about how much they care about social justice like to ignore people with disabilities. 

I grew up in the liberal Northeast state of Massachusetts, and so we spent a lot of time talking about racism, but only racism against *ablebodied* BIPOC people. We talked about the women’s rights movement, but the only role models we had were *ablebodied,* neurotypical women. In high school we talked about the rights and experiences of LGBT-identifying persons, but only *ablebodied” LGBT identifying persons. There was no intersectional discussion in which we discussed the needs and experiences of disabled BIPOC or LGBT-identifying persons. We did not learn about disability history, the word “ableism” was never mentioned, we did not learn that there was a dude named Peter Singer working at Princeton who wanted disabled people to die, and when I joined a high school social justice group, we did not talk about disability unless I brought it up.

Because of this cultural invisibility, organizations that see assisted suicide as a civil right have a history of ignoring disabled people. For instance, I do not know what President Biden’s position on assisted suicide is; I hope that he does not support it. However, Xavier Beccerea, Secretary of the Department of Health and Human Services does support it and Biden’s healthcare equity team recently tried to prevent the inclusion of disability in its health equity research, because including it would “overwhelm its resources” (Article Link).

The Center for American Progress, which in the past has signalled support for “aid in dying,” (Article Link) finally created a disability rights division in 2018 (Article Link). That leaves me feeling respect and admiration for the disability rights advocates who founded that project, but not much trust in the CFAP.

Similarly, after decades of generally ignoring serious human and civil rights violations against disabled people since its founding in 1920, the assisted suicide supporting ACLU finally created a disability rights division in 2012 (Information Link). Yet, in 2021 the able bodied director of the New York ACLU had the audacity to brag that her organization had been fighting for disability rights “for decades,” so trust her, assisted suicide will turn out fine (Article Link). Well, that’s not true, other then a very small sprinkling of cases here or there, her organization has a horrible record on disability rights. The fact that organizations like that, and able-bodied interlopers from groups like the Death With Dignity National Center are trying to gain inroads into disability rights groups, have started talking about ableism practically yesterday isn’t terribly impressive. 

Assisted suicide is part of a pattern where groups are getting into disability rights when they feel like it helps their cause, with grave consequences for people with disabilities. 

They need to apologize for ignoring disabled people and advocate strenuously for disability justice, then maybe it will be reasonable to trust that you care.

Liz Carr: I'm fighting for the right to live.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Link to the Better off Dead? documentary (Link) 

Liz Carr is on the left

Liz Carr, who is an actress, comedian and disability rights activist, produced a documentary that she titled - Better off Dead? that will be aired on BBC1 on Tuesday May 14 at 9 pm (UK). Carr may be best known for her role as Clarissa Mullery on the BBC series Silent Witness.

Carr was interviewed by Anna Moore for an article that was published by the Guardian on May 14 titled: I'm fighting for my right to live.

Moore asks Carr about the timing of her documentary, Better off Dead? Carr responds by saying that she has wanted to do this since 2011, and then she says.

“It feels like it’s coming at us from all angles,”

“I’m so incensed that there is never any balance on this topic. Of course I’m worried I’ll be slagged off, that it’ll get nasty on social media. Will people come up to me on the street? But I worry more about my friends that are in the programme. The film is full of my world, my love and support. I feel a duty of care to them.”

Moore explains Better off Dead?

Better Off Dead? takes a deep dive into assisted dying and disability. Carr believes the two can’t be separated. It’s disturbing, of course, but also life-affirming and darkly funny, which isn’t surprising; Carr was a standup comic for years. In the opening shots, she and her disabled friends remember the times they have been told they would be better off dead. One, Jamie Hale, has even had someone offer to kill him. (“And this wasn’t someone I was particularly close to,” he says.)

The film is also intensely personal. Carr looks back at her childhood and the impact of having her life turned upside down by a rare autoimmune condition at seven. It’s something she has been reluctant to share in the past. “Our perception of disability is that it’s the greatest tragedy to befall you and I don’t want to compound that,” she says. “But I did want to show that I do know how your life changes so hugely when you join that camp – the most unsexy, unfun, unglamorous group. Who’d want that?”

Carr grew up healthy. At the age of 7 she went with her family for two years to America where she became ill from a rare autoimmune condition called arthrogryposis multiplex congenita. Moore explains:

At 11, Carr became a wheelchair user. In her early teens, a doctor told her bluntly that she wouldn’t live to be old. For Carr, the hardest scene from the programme was the one filmed in her mum’s kitchen, in which her mum reads aloud from the diaries she kept during that period, where she recorded what her daughter was experiencing. “She is very lonely,” reads one entry. “She gets very down and often says she wants to die rather than carry on, as she can’t see any good in the future.”

“I sat and listened to every awful thing that happened for the camera,” says Carr. “I had naively thought: ‘I’m in control of this,’ and then I wasn’t. I was quite damaged by it. I couldn’t tell my mum – she thought she was doing brilliantly. My mum was proud as punch!

Carr points out that Canada is considering extending euthanasia to "mature minors" when asked the question - what if assisted suicide had been available then?

Moore provides significant information about Carr's education and the development of her professional acting and comedy career. Moore then comes back to the issue of euthanasia and writes:

Through all this, the issue of assisted dying has been there, on her mind, in the background – but it crystalised and became urgent after the case of Daniel James in 2008. James had been paralysed during rugby training and died at a clinic in Switzerland 18 months later. He was 23. “I’m not here to judge him, but what I judged about that situation was the media response, the public response,” says Carr.

“He had died 18 months after becoming disabled. Not terminally ill – just disabled. But the press and public reaction was: ‘Of course, it’s the right things to do. It’s difficult, but it’s the brave decision.’ A disabled young man wants to end his life and we don’t question that? Nobody was asking: ‘How can we change? What must we do so that someone who can’t walk or do certain things has a quality of life that’s acceptable?’ I’d always known assisted dying was about disability – but oh my God.”

Moore then reports on why Carr clearly opposes assisted suicide:

Surely, though, assisted dying is about personal choice? Even if legislation were brought in and included “unbearable suffering”, which might make someone with Carr’s condition eligible, no one would be forced to take that route. “This isn’t because we think we’re going to be grabbed and taken,” says Carr. “The biggest catastrophe is that we’d choose it ourselves because there was no more choice for us.

“If an individual chooses to end their life, I’m very sorry and sad, but it’s private and personal – it doesn’t impact me. Changing the law to legalise assisted dying does. I know so many people who are suffering, not because of their condition, but because life is so much more difficult than it needs to be, because they need more than a 15-minute visit from a care worker in which to go to the loo and have a sandwich, because they’ve grown up in a world where they’ve been devalued, maybe told they’re a burden, and expectations of their lives are so low.

Carr is proud with the final cut of the documentary, but she is not done with the issue. Moore reports:

Carr’s next project is in similar territory. She will be at Galway international arts festival in July in a play called Unspeakable Conversations, based on the debate between the late lawyer and disability rights activist Harriet McBryde Johnson and the Princeton professor Peter Singer, who has argued that parents should be able to kill disabled babies. (“It’s about the same shit,” says Carr.) After that, she has some TV lined up that she can’t yet talk about: “But it’s fun stuff.”

In some ways, she will be glad when this is behind her. “It’s a tough subject, a tough campaign – you have to be so resilient,” she says. “Life is more fun when you’re not doing this stuff. Acting is what I love and what I really need to get back to. There are those that are fighting for the right to die. I’m fighting for the right to live.”

Previous articles about Liz Carr:

• Better off Dead? documentary to be aired on BBC1 on May 14 (Link).
  
• Laws against assisted suicide provide equal protection (Link).
• Liz Carr address to Victoria Australia parliament on assisted suicide (Link).
• Disability activists say no to euthanasia bill (Link).

Better off Dead? documentary to be aired on BBC1 on May 14.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Liz Carr

Liz Carr, who is an actress, comedian and disability rights activist, produced a documentary that she titled Better off Dead? that will be airing on BBC1 on Tuesday May 14 at 9 pm (UK). Carr may be best known for her role as Clarissa Mullery on the BBC series Silent Witness.

John Pring interviewed Carr for Disability News Service for an article that was published on May 9, 2024. Pring begins with Carr telling him how frighting the concept of legalizing assisted suicide is for people with disabilities, within the concept of the failing National Health Service (UK):

Legalising assisted suicide, she said, would be even more dangerous at a time when “we are absolutely removing our welfare state, and we are dismantling our incredible NHS”.

Last week, at a protest outside the Houses of Parliament, she told DNS she was terrified by the government’s latest proposals to cut spending on personal independence payment.

She said: “I don’t even think the other side will make the connection over how terrifying that feels to disabled people yet again.

“We know disabled people have killed themselves because of DWP reforms in the past.

Carr speaks about her experience with interviewing Amir Farsoud, a Canadian with disabilities who sought euthanasia based on fears of homelessness. Pring reports:

“That’s what terrifies me: the kind of thing happening in Canada where people for socio-economic reasons are choosing to end their lives through euthanasia.”

In Canada, she interviewed Amir Farsoud, a disabled man from Ontario, who requested an assisted suicide because his landlord was planning to sell off his apartment building, and he was terrified at the prospect of being left homeless on the freezing streets.

He eventually changed his mind about seeking an assisted suicide after a crowd-funding effort raised tens of thousands of dollars to support him.

Farsoud told Carr that it was easier and quicker in Canada to apply for medical assistance in dying (assisted suicide) than disability benefits.

Carr comments on Keir Starmer, the leader of Britains Labour party, who is pro-euthanasia and currently leading in the polls, if an election were to happen:

She said: “I’ve always been a little bit worried about Starmer getting in power, because he introduced the guidelines [on prosecuting cases of assisted suicide, in 2010] when he was director of public prosecutions.

“I’ve known he’s been pro, we all have, for over 10 years.”

She said this was “quite frightening” and “makes it difficult for voters like me to know what to do for the next election”.

Asked if she had a message for Starmer, she said: “I would say, please watch the documentary.

Carr, who is an athiest, said that people who are concerned about the legalization of assisted suicide shouldn't sideline the opposition because they are marginalized or religious because there are many people who are concerned about legalizing assisted suicide.

Pring then spoke to Carr about her meeting with Canadian euthanasia doctor Ellen Wiebe:

She also spoke of the “chilling” attitude of Canadian doctor Dr Ellen Wiebe – who is herself disabled – who has provided assisted suicide to hundreds of Canadians since it was legalised and is shown in the documentary telling Carr she was “so glad, so glad” that they had medical assistance in dying laws in Canada.

She told her: “I love my job. This is the very best work I have ever done.”

Wiebe is also shown saying that she had never had so many grateful patients, which Carr said was “one of the most terrifying things in the documentary”.

She said: “When she says that doctors like grateful patients, that is chilling to me.

“And as somebody that’s had a lot of involvement with, you know, medics, that really frightens me.”

Pring then reported on Carr's message at a preview event for the documentary:

“If we ask the question, ‘Do you want to stop dying people’s suffering?’ everybody has to say yes to that, or you’re a psychopath.

“We all, I believe, want everyone to have a good death, so the answer is how we do that.

“And the only difference between me and [those supporting legalisation] is how you do that. That’s the only difference.

“I don’t want people to suffer. I want people to have a good death. I just think people will suffer more if we introduce assisted suicide.”

Carr commented on the media reports that indicate that legalizing assisted suicide is inevitable. Pring reports:

she said there was “nothing inevitable about it, nothing at all… I still think it’s time for a conversation and it’s not inevitable.”

Carr said she did not understand why those fighting for legalisation did not put their resources into pushing for improved healthcare and palliative care, or “into giving people choice and control in their lives”.

She said: “Because choice isn’t choice when you’ve got no choice. It absolutely isn’t.

“And I meet people in my life who are suffering absolutely because they do not have choices in their life.”

Pring reports that Carr produced the documentary to get people with disabilities prominent in the debate:

One of the things she wanted to do with the documentary, she said, was to ensure that the disabled activists who are “a big part of my life” and “who have waited for this voice for years… feel heard and seen”.

A series of disabled actors, artists and activists opposed to legalisation are either seen on film or interviewed in the documentary, including Lisa Hammond, Ellen Clifford, Jamie Hale, Paula Peters, Eleanor Lisney, Penny Pepper and disabled peers Baroness [Jane] Campbell and Baroness [Tanni] Grey-Thompson.

Pring concludes the interview with Carr stating that her interview with Melanie Reid, who supports assisted suicide, primarily focused on the experiences of being two disabled women, living in contemporary society, and the struggles and the fights to get our care needs met”.

The documentary, Better off Dead? creates common ground for people with disabilities to oppose the legalization of assisted suicide. 

Previous articles about Liz Carr:

• Laws against assisted suicide provide equal protection (Link).
• Liz Carr address to Victoria Australia parliament on assisted suicide (Link).
• Disability activists say no to euthanasia bill (Link).

People need health care free from MAiD (euthanasia).

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Gabrielle Peters

I was going through my emails and found this excellent article that was published on April 26 in Policy Options by Gabrielle Peters, a disabled writer, policy analyst and the co-founder of Disability Filibuster. X: @mssinenomine

Peters is writing from a disability perspective as to why we need MAiD free health care options in Canada. Peters explains:

Some health-care providers see MAiD-free spaces as working environments that allow them to respect their conscience and adhere to their professional understanding of doing no harm.

Disabled patients, however, have expressed different reasons for wanting MAiD-free health-care settings.

Peters continues:

To start with, we should have the right to receive medical care in places and from people who do not contemplate or participate in killing disabled people as part of a care plan.

Who wants to look up at a doctor from a hospital bed and wonder if they have just deliberately ended the life of someone with a similar condition? Or to overhear conversations in hallways, waiting rooms, nursing stations or on the other side of a curtain, about how a lethal injection preserved a relative’s dignity before she – gasp – became incontinent, like me.

Peters explains that faith based facilities (for now) are the only MAiD-free spaces. She then comments on the reality of ableism:

Many disabled people can remember a time in their lives when they would or could have agreed to MAiD had it been suggested to them. The reason for this unfortunate common bond is ableism.

A brief and widely adopted definition of ableism Fiona Kumari Campbell explains it as “a network of beliefs, processes and practices that produces a particular kind of self and body…that is projected as perfect and species-typical, and therefore essential and fully human.”

As a result, disability “is cast as a diminished state of being human.” It is a short journey from believing disability makes you less human to thinking that it is better to be dead than disabled.

Ableism in Canada is structural, codified, and acts as the rebar in our economy, politics, and culture. It defines and designs access to resources, services, public space, education, housing, health and health care, employment, and fundamental human rights.

Ableism affects how others perceive and treat us and how we perceive ourselves and our experiences. In this way ableism informs how our suffering is interpreted, making causal links that are not supported by evidence.

Peters then quotes from Professor Heidi Janz who commented on medical ableism:

Medical ableism is often presented as “common sense” instead of bias, University of Alberta professor Heidi Janz says. Part of what allows it to remain unexamined is it exists within a larger contested framework referred to as the medical model of disability. In this model, disability is defined as deficiency, tragedy, and the opposite of health. Suffering is assumed and, because disability is understood entirely as a problem with an individual’s body, knowledge, power, and authority are placed within the medical field.

The result of this is our entire humanity is compressed into our diagnoses. There is no examination of the inherent political oppression or the bias in treatment because the medical model assumes the inequity disabled people experience is a logical result of being disabled.

This also incidentally is one of the many reasons MAiD assessors are ill-equipped to identify social suffering and solutions.

Peters writes about how health-care professionals have power over people with disabilities since the doctor are often the gate-keeper to the services and that people need. Peters continues:

That signature is shaped by their perception of us, which is shaped by how well we align with their judgment of us as a “good patient.” In recent years, medicine has moved away from the use of the word compliant to describe whether patients follow medical advice. Now they talk about adherence. But whichever word they use, the power imbalance remains, and patients and family are hesitant to ask questions or raise concerns. As well, in most interactions, patients have just 11 seconds to speak before a physician interrupts them, research has shown.

Physicians conflate disability with suffering. Some bioethicists have likened disabled people to “happy slaves” for daring to suggest that disability is not a synonym for misery. Physicians consistently rate disabled people’s quality of life lower than disabled people themselves do. This is called the disability paradox.

Peters then explains why the euthanasia lobby have had such influence:

The deluge of emotionally charged MAiD coverage is driven primarily by stories crafted or at least aided by the public relations and lobby efforts by proponents. As part of its recent campaign, Dying with Dignity, a national organization that campaigns for the expansion and liberalization of MAiD, emailed supporters urging them to submit opinion pieces to media organizations and offered the help of its communications team.

The CEO of Dying with Dignity has met with senators and members of Parliament in official lobbying capacity 41 times in the last 12 months. The charity also employs lobbyists at Blackbird Communications.

In a public-relations war, money can create even more imbalance than it does in a courtroom.

Peters explains her concerns with suicide contagion.

But much of the media coverage of MAiD runs counter to the World Health Organization’s guidelines for responsible reporting on suicide. The WHO warns against spreading suicide contagion through prominent placement of stories about suicide, by normalizing it or presenting it as a constructive solution to problems, and by explicitly describing the method used.

Perhaps a lot of the coverage of MAiD ignores contagion protocols because MAiD is a euphemism for assisted suicide or euthanasia.

Peters then comments on the concept of the "forced transfer":

A former executive director of Dying with Dignity said in a 2019 statement of claim that it was her “creative-thinking” that is responsible for the “ground-breaking” term. The statement was part of an Ontario lawsuit in which the public-relations value of the term was highlighted, noting it has been adopted “nationally and internationally by academics, clinicians, lawyers, and others in the right to die movement.”

Patients are transferred every day to access care, equipment or expertise that is not available where they are.

And it is striking that the term “forced transfer” is selectively applied to MAiD and not, for example, patients forced to move to long-term care facilities not of their choosing, on threat of being billed $400/day by the government if they refuse.

Peters comments on the reality of her deterioration of care.

In 2009, before MAiD was legalized, I was living in North Vancouver. Since the onset of my rare neuromuscular disease several years prior I had been seen by an assortment of specialists at three different hospitals. Approximately two years of that time was spent in search of diagnosis for the multiple and worsening symptoms. At first, I thought I was just run down following a virus, but a turning point was when I had to be helped out of the community centre pool by a lifeguard because I couldn’t catch my breath a quarter of the way into my first lap. Over time, I transitioned from trail runner to using a cane, then walker and eventually a wheelchair. Simultaneously I transformed from being perceived as normal but sick to disabled and “unfixable” – and fat because of the corticosteroids.

No longer able to work and unable to access benefits due to eligibility criteria that declared me a dependent of the boyfriend I had been living with, my economic situation deteriorated.

Soon, my care changed, too. Nurses stopped complimenting me on my shoes, asking about my work, and telling me not to give up. The new answer to every question was a shrug and “you’re disabled.” It took three trips to two different hospitals and a tense standoff to finally be diagnosed and treated for deep-vein thrombosis and a pulmonary embolism following an intravenous immunoglobulin treatment (IVIG).

Meanwhile my condition created a smorgasbord of symptoms and managing one would sometimes worsen or create another. There were complications, “atypical presentations,” systemic infections, superbugs, and an ever-growing list of prescriptions sometimes accompanied by allergic reactions and serious side effects. I was a “high-cost health-care user.” The term is used to describe the five per cent of health-care users who are said to account for nearly two-thirds of health-care costs.

I sensed a growing defeatism among those providing me with care. But I was certain that the danger was at least partially a result of the health-care system’s siloed and almost exclusive focus on the latest acute crisis made worse by under-funding and embedded bias.

Peters explains her experience with treatment and care at St Paul's hospital in Vancouver that led to her improved health. There was a hospital employee who pressured her to accept non-treatment as a "treatment" proposal but after dealing with that employee she did find good care at St. Paul's. She then writes:

Many, if not most, disabled people would prefer the additional option of secular MAiD-free spaces. But Catherine Frazee, whose quote starts this article, has articulated the view of a great many disabled people who fervently want safety from MAiD.

Affirming support for the belief of “better dead than disabled” in health care is dangerous and cruel. Canada has made disabled people a killable class, and hardly anyone has considered the impact this would have on us. This country must maintain MAiD-free health-care spaces.

More articles concerning Gabrielle Peters:

• Disability activists pushing back against euthanasia (Link).
• Canada is not as advertised. MAiD is eugenics (Link).
• Canada. How death care is pushing out healthcare (Link).