By Lisa Blumberg, JD
Assisted Suicide Laws Based On the Oregon Model Sweep In Disabled People
Not Dead Yet UK Warns About Lord Falconer’s Aim to Legalize Assisted Suicide
[Dated July 27, 2024] Yesterday, Lord Falconer of Thoroton (Charlie Falconer) introduced a Private Members Bill (there’s an explanation of what they are here) to make it legal to assist people who are terminally ill to die.
As a group of disability rights campaigners, Not Dead Yet UK are deeply concerned about this course of action.
Like many disabled people, we are conscious that attempts to build legalised suicide into healthcare can be profoundly discriminatory – if a non-disabled person wants to die, their doctor does not give them the means to kill themselves.
We want the same care and respect to be given to terminally ill people if they are suicidal.
Rather than legalising the suicides of disabled people, we argue that the only safe way forward is better investment in palliative care and a commitment to improving the things that people often cite when they apply to die in other parts of the world, such as a lack of dignity and feeling like a burden.
Can an assisted suicide law ever be “safe”?
Charlie Falconer told The Guardian, “My bill is designed for people who will die in the near future. I don’t think the state should be helping people who are not terminally ill to take their own lives.”
However, this does not reassure us.
We have seen, again and again, across the world, that laws that begin with relatively strict parameters, such as terminal illness, expand and expand until people with treatable conditions, children, and people who simply can’t afford accessible housing end up being approved to die by assisted suicide.
While Falconer assures us there will be “safeguards”, in reality, these safeguards are virtually impossible to implement effectively. Even the idea that doctors can accurately predict when a person has six months left to live does not reflect reality.
And in a world where there is growing awareness of coercive control, and where we know that many do not receive adequate or appropriate medical care, pain management or social care, we are creating the conditions for people to find themselves agreeing that yes, they should probably die, including to avoid feeling like a burden, when providing them with what they actually need to live could allow them to enjoy and participate in their own life again.
What if good care stopped us from wanting to die? Where are the proposed laws to provide everybody with compassionate and appropriate care instead?
Can Falconer succeed?
Falconer has already failed at changing laws in the area of assisted suicide six times, as detailed here, but he hopes that this iteration of the Assisted Dying for Terminally Ill Adults Bill will be the one that enables assisted suicide for terminally ill people.
Private members’ bills, especially from Lords, are generally thought to be an ineffective way to create a new law. According to Politics Home, “almost all Private Members’ Bills fail. In all sessions of each Parliament between 1997 and 2015 generally only between three per cent and six per cent of bills succeeded”
What could be different this time is that Keir Starmer, the new Prime Minister, seems to be keen on legalising assisted suicide. Earlier this year, he said that if he became prime minister, he would ensure parliamentary time was made available to debate the issue and he would allow a free vote (where politicians vote according to their conscience and personal beliefs, not according to what their political party wants).
Falconer told LBC that he “strongly feels the time for this reform has come”, but presumably he felt the same when he introduced attempts to change the law in 2009, 2013, 2014, 2015, 2019 and 2022 too.
However, with the Prime Minister on side, this time, disabled people could find ourselves under threat in an unprecedented way in this country.
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Must Read: Disability rights opponents of assisted suicide are not a “vocal minority”
By Meghan Schrader*
Over and over again assisted suicide proponents claim that disabled people who oppose assisted suicide are a “vocal minority.” For instance, American euthanasia advocate Thaddeus Mason Pope ridiculously wrote on X that “millions” of disabled people want the right to have “MAiD.” Well, it’s not true.
Assisted suicide, even in its more conservative form, is opposed by United Nations Special Rapporteurs on the Rights of People With Disabilities. In 2021 every disability rights organization in Canada and several ally organizations like Black Lives Matter Toronto and Reproductive Justice New Brunswick signed a letter telling the Canadian government not to expand its assisted suicide program to disabled people who weren’t dying, because the Canadian government’s decision to privilege the autonomy of a few disabled people would force the rest of the disabled community to become members of a killable caste. One can see evidence that disabled proponents are in the minority by comparing the webpages of USA groups Compassion and Choices and Not Dead Yet. NDY lists 17 national disability rights organizations that oppose assisted suicide. In contrast, C&C lists 4 state disability rights organizations who have said that the Oregon model of assisted suicide is acceptable.
Disability studies literature shows a similar pattern. In his essay in Disability Bioethics, Harold Braswell asserts:
“The framework of this debate limits the potential for disability discrimination. PAS is itself a moderate iteration of the right to die. And this moderate iteration is, in the USA, only available to individuals who are terminally ill. This makes the American interpretation of PAS relatively conservative even relative to other countries where it is legal. This conservatism makes it possible for some disability bioethicists to justify supporting it, though such support is still relatively marginal within the field.”
Yes. As someone who has also studied the euthanasia issue, I can tell you that support for assisted suicide is “marginal within the field.”
Self-proclaimed “disability rights advocate” and unrestricted assisted suicide enthusiast Christopher Riddle also admits that his efforts to sell death to disabled people set him apart from most of the disability studies field. In his article “Assisted Dying and Disability,” Riddle writes:
“While academic literature has a multitude of perspectives on this issue, the public attitude amongst mainstream disability rights scholars, activists, and more generally, people with disabilities, is relatively consistent in its position: assisted dying should not be permitted.”
Yes. That is true.
In an British Medical Journal article entitled “Disability Community Feels Ignored in Canada’s Assisted Dying Expansion,” Sammy Chowm writes:
“While some in the disability community support MAID expansion, the vast majority are opposed. More than 100 disability organisations have opposed track two and the 2021 bill given the gaps in mental health services their community needs.”
Yup.
Proponents like to point to commissioned polls, like the one paid for by the recently formed USA astroturf group UsForAutonomy, or the Populous poll commissioned by Dying With Dignity in the UK. However, there is no way for the proponents to prove that the majority of people who answered those anonymous polls were disabled. I live with disabilities that most people cannot perceive at first. When I’ve sought accommodations for my invisible disabilities, I’ve had to present rigorous documentation that they exist. Therefore, I think it’s reasonable to take the anonymous poll respondents’ claims to be disabled with a grain of salt.
There are also polls that indicate that the majority of disabled people oppose assisted suicide, such as one commissioned by the disability rights organization Scope in the UK. However, I doubt that polling is the best way to gauge people’s positions on various issues. I think people can probably get any result that they want from a poll, if they ask the right questions and the right people.
As for the few disabled people I know of who support assisted suicide, it seems to me that they generally fall into two categories of people: the privileged and the despairing. Such disabled people need to be considered in respect to intersectionality and the high suicide rate in the disabled community.
The first category of disabled people, who typically spearhead the legalization of assisted suicide for people with disabilities, generally fit the profile of the rest of the “aid in dying” proponents: they are privileged. Apart from being disabled, they are usually wealthy and white. Hence, they have the resources to circumvent some of the structural ableism and interpersonal pressure that pushes other disabled people towards PAS.
Nicole Gladu and Julie Lamb, the two women who lead the fight to remove Canada’s “reasonably foreseeable death” standard for assisted suicide, are quintessential examples of what I mean when I say that a disabled supporter is otherwise privileged. Both people would have qualified to die under Canada’s “reasonably foreseeable death” standard for assisted suicide, but they were not willing to compromise and wait until their deaths were imminent. Gladu lived in a mansion by the ocean, and she demanded the right to kill herself before her death was “reasonably foreseeable” so that she could die “with a glass of rose champagne in one hand and a canape of foie gras in the other.” Julie Lamb was also affluent, white and married, and she fought to remove Canada’s reasonably foreseeable death standard so she could plan her death down to the very minute that suited her whims, whether that be tomorrow or in ten years. She said, “I am comfortable and happy with my days. But it is a huge relief and gives me so much peace to know that when I am ready, I do have a choice.” So, a judge gave her her choice and now every other disabled Canadian has to live in a society where doctors and suicide hotlines suggest that they kill themselves.
As for the less privileged type of disabled person who wants “MAiD” because of suffering and despair, it’s not shocking that the right to die movement can find disabled people who would like assistance to kill themselves. Research indicates that disabled people have a much higher suicide rate then the general population. For instance, I met one disabled woman on X who is one of the few disabled people I’ve met who supported Canada’s “Track 2 MAiD program.” She was living with severe psychiatric suffering, trauma, poverty and other forms of dysfunction. She had reached out to several government and medical agencies seeking help but did not get it. I and a few others tried to reach out to her with other resources, trying to encourage her to live, but it was as though she lacked the reasoning ability or wherewithal to respond to those offers. Tragically, she killed herself “the old fashioned way” about two weeks ago.
Another disabled Canadian who supports “Track 2 MAiD” tweeted that he wants it to exist because he perceives that he is “a loser, failure, and a disabled guy who gave up long ago.” He tweeted, “I’m not seeking MAiD for an extra $1000 a month. I have barely gotten $1000 a month for twenty years, the damage is done. Never healed or grew roots, developed agoraphobia and bulimia from eating junk and living in abusive slums. My best twenty years gone. TOO LATE!”
I empathize with both of these people. I’ve experienced severe depression and eating disorders; I would never judge someone for being so overwhelmed by their circumstances that all they can think about is death. But, a legal and medical system built on the philosophy of “It’s too late, kill yourself,” is not conducive to helping other disabled people lead happy, healthy lives. A person tweeting under the username F-k Capitalism expressed a similar sentiment: “Yeah. Like I said, I don’t judge individuals choosing MAiD. It’s sad there was no support for them and I hope they’ll find peace, but it’s the pushing of that choice onto others, esp by wealthier disabled people that constitutes lateral violence.”
Exactly. I’m angry that there isn’t more support for such individuals and I strongly support giving them better support, but giving such persons exactly what they want right now goes too far. I can have empathy for such individuals while also holding that is unjust for their suicidal ideation to become the basis for a public policy that affects everyone else. And that’s the position on assisted suicide that prevails in the disabled community.
* First published on August 1, 2024 by the Euthanasia Prevention Coalition.
Meghan is an autistic person who is an instructor at E4 – University of Texas (Austin) and an EPC-USA board member.
A Watershed Moment: NIH Designates Disabled People as a Health Disparity Population
By Lisa Blumberg, JD
In late 2023, the National Institute on Minority Health and Health Disparities (NIMHD), designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health (NIH). This means that NIMHD now recognizes that people with disabilities as a group experience significant disparities in their rates of illness, morbidity, mortality and survival, driven by social disadvantage, compared to the health status of the general population (italics mine for emphasis). Other NIH-designated populations with health disparities include racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities and sexual and gender minority groups (NIMHD is one of the institutes comprising NIH),
NIMHD’s decision, which was arrived at after some controversary, reflects both the input of disability rights activists and scientific evidence. As NIMHD director, Dr. Eliseo J. Pérez-Stable stated, “People with disabilities often experience a wide and varying range of health conditions leading to poorer health and shorter lifespan. In addition, discrimination, inequality and exclusionary structural practices, programs and policies inhibit access to timely and comprehensive health care, which further results in poorer health outcomes. People with disabilities who also belong to one or more other populations with health disparities fare even worse.”
The designation is an acknowledgement that anti-disability bias is a force undermining the health of disabled people in the U.S. and so the health of the country.
Steeped in the medical model, NIH has always funded research into treatments for conditions resulting in disabilities. Now it will also fund research into the myriad barriers disabled people face in achieving equal access to health care and how these barriers can be eradicated. For example, simultaneously with the announcement of the designation, NIH issued a notice of funding opportunity calling for research applications focused on novel and innovative approaches and interventions that address the intersecting impact of disability, race and ethnicity, and socioeconomic status on healthcare access and health outcomes.
The social model of disability has come to the bastion of medical research.
“This is a big deal,” said Peter W. Thomas, co-coordinator of the Disability and Rehabilitation Research Coalition, which focuses on improving disability research.
Writing in Stat, Lynne Moronski, a health care researcher and parent of a daughter with significant disabilities, called the designation a landmark decision.
Joel Reynolds in a recent piece in JAMA Health Forum called it a watershed moment. He went on to say, “medicine is indeed at the beginning of appreciating the problem of ableism in medicine, the beginning of making equity of care for disabled patients a priority, and the beginning of not just acknowledging, but mitigating and eliminating the health disparities faced by disabled people. This beginning promises a future that improves quality and equity of care across patient populations, builds better health care systems, and makes a world that is a better fit for all.”
The action by the NIH and the updating of the 504 regulations to prohibit discrimination based on disability by health care providers receiving federal funds are victories for disability activists. Nonetheless, we still face threats. The medical system continues to be inefficient, fragmented and profit driven. The “better dead than disabled” ethos is virulent and, as discussed in a future blog, it underlies much of the agitation for legalized assisted suicide and euthanasia. It is the best of times. It is the worst of times.