This article was first published by Amy Hasbrouck on her Substack (tigerlily61) HERE.

The Liberal government defeated the private members bill that would have prohibited MAiD for people whose requests were based only on a “mental disorder,” (either because it was sponsored by a conservative, or they didn’t want to bother amending the language) even as it announced a policy that would achieve the same end. This was just the latest in the Liberals’ highly (un)democratic moves undertaken with regard to state-sponsored killing of ill and disabled people.

At the same press conference, the Carney administration announced that while people with mental illness will be protected against the coercive effects of the MAiD regime, people with dementia will be thrown under the bus. Because the same prejudice that drives stigma and discrimination against people with a psychiatric disability applies equally (albeit with a slightly different flavour) to people with dementia; “You’d have to be out of your mind to want to live like that.” Euthanasia via advance request creates a motor coach sized loophole for abuse.

Under advance requests, people with dementia have three strikes against them.

The first strike occurs when the person receives a dementia diagnosis. People who have lived as non-disabled who receive any kind of disability diagnosis often face a revelation similar to opening a “Pandora’s box” of frightening ideas about what their life will look like in the future. Such ideas are based on prejudice and stereotypes, starting with children’s fairy tales, developing through movies and TV, then gaining momentum and toxicity on the internet and social media. A person facing a dementia diagnosis will hear dire predictions about loss of dignity and personhood, and be treated to sordid tales of elder abuse or failures of the inadequate, inappropriate and disempowering elder-care infrastructure.

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The second strike comes when the person making the advance request, in the aftermath of a shocking diagnosis and in the face of acute disability discrimination and doomsaying, must designate a decision-maker, and describe the conditions that will trigger their demise. The person probably won’t receive much balanced information to counteract the above-mentioned negative stereotypes and horror stories, nor are they likely to hear about the positive aspects of living with dementia, such as:

• The potential for creativity – Art, painting, music and crafting – given time and lack of inhibition. Creative activities require less memory or language, and allow for emotional expression.
• Connection through music: The areas of the brain that process and remember music are often preserved longer. Familiar songs can trigger joy, comfort, and active engagement even with profound memory loss.
• Lowered self-expectation and fewer demands can encourage experimentation and free up energy for hobbies and creative pursuits.
• Jokes and humour can be recycled. Favourite movies or TV shows are new again.
• Living in the Moment: Many people are more able to focus on the present, appreciating sensory pleasures—such as a warm cup of tea, a pet, or a walk outside—without the burden of past regrets or future anxieties.
• Reframing Priorities:
  • A diagnosis often prompts people to let go of trivial stressors, slow down, and focus on what brings happiness and connection.
  • Fuck ‘em if they can’t take a joke.
• Advocacy and Purpose: Some people with early-stage dementia find renewed identity and purpose in public speaking, writing (such as poetry or memoirs), and advocacy to challenge social stigmas.
• Strengthened Relationships: Shifting the focus away from traditional ideas of “success” to emotional presence can foster deeper, more authentic bonds between partners, family members, and caregivers.
• Incentive for Wellness: Adopting lifestyle changes—such as regular physical exercise, balanced nutrition, social activities, and cognitive stimulation—can improve overall physical health, mood, and mental clarity.
• Preserving Independence: Utilizing daily routines, assistive technology and devices, visual reminders, and self-directed supports helps maintain autonomy, dignity, and a sense of being useful, valued, engaged and in control.

However most general practitioners are not familiar with geriatric rehabilitation and independent living supports. More typically, the “triggering” conditions are listed as a litany of losses that are presented as undignified and intolerable, such as forgetting the names of one’s spouse or children, losing bladder and/or bowel control, being unable to prepare meals or needing help to eat; despite the fact that everyone lives with these realities during the course of their lives.

The third strike happens months or years later, when the designated person decides that the conditions for death have been met. This assumes, of course, that the designee is still alive, available, not alienated, won’t benefit from the person’s demise, and has not burned out from unsupported caregiving, and so can make a deliberate and unbiased determination.

Even if the person has adapted to their disabilities, and has made peace with their dementia, any sign of dissatisfaction – passing frustration, or even just having a bad day – will likely be taken as indicating that they have reached the end of their rope, and want to “get it over with.” Disinterest in, or ambivalence about pursuing euthanasia may be deemed as demonstrating incompetence, since the person is expressing a different view to that stated when they were “competent.”

The euthanasia process having been set in motion, any further expressions or gestures of disagreement or resistance will be interpreted not as a desire to live, but either as desperation to have the process finished, or simply as evidence of incompetence. Such behaviour may be met with deception (clandestine administration of sedatives) and even physical force, in order to honour the person’s wish to avoid a “dehumanizing and undignified death.”

Strike three. You’re dead.

Amy Hasbrouck is Executive Director of Toujours Vivant-Not Dead Yet (Canada) and Board Member of Not Dead Yet – The Resistance (USA).

On September 23, 2026, the U.S. District Court for the Northern District of Texas granted an order establishing a settlement for the Texas v. Kennedy lawsuit. The final settlement vacates the integration-focused 45 C.F.R. § 84.76 regulation and other parts of the Section 504 final regulations that concern community integration, in particular those that reference the “most integrated setting appropriate.” The settlement does not alter the remainder of the 2024 regulations.

We at Not Dead Yet strongly condemn the settlement as what it is: a bald-faced attempt to ignore the requirements of Section 504 and the ADA. The settlement is inconsistent with more than twenty years of established court precedent and both the text and context of both laws. Ignoring the law will not change it, and the binding legal precedent remains the same, but we are nonetheless appalled.

Many of the countless gains made by people with disabilities in the United States over the last twenty-seven years are based on the unequivocal fact that we are protected by civil rights laws that demand our integration. Accessible public transportation, integration in education, equal employment and the deinstitutionalization movement are founded on the ADA’s dismantling of the “shameful wall of exclusion.” The integration requirements of Section 504 and the ADA are a part of and critical to this long history of increasing integration.

Not Dead Yet is founded on the premise that disabled lives have equal worth. We firmly believe that people with disabilities have the right to live in the community, with access to the supports and services they need to survive. We demand accountability from the medical profession and oppose any attempt to cheapen the value of disabled life or to claim that disabled people are “too expensive” or “too inconvenient” for equal treatment. The problem has never been a lack of funding, but rather a lack of political and moral will required to provide it.

To that end we urge the federal government to change its course and will oppose any attempt to return our people to institutions. Our lives are worth living, and we are Not Dead Yet.

We, the undersigned national disability rights organizations, urge you to use your platform to advance disability justice and to defend the rights of people with disabilities against the inherent discrimination and dangers of assisted suicide legislation. For the reasons set forth below, we urge you to reconsider the impact of your involvement.

Like Me Before You and Million Dollar Baby before it, In Love treats disability — in this instance, Alzheimer’s disease — as a fate worse than death, rooted in the eugenic idea that life with a disability is not worth living. On Amy Bloom’s website, AmyBloom.com, amid laudatory reviews of the film’s source material, her memoir In Love: A Memoir of Love and Loss, appears a starkly ableist description:

“Forced to confront the truth of the diagnosis and its impact on the future he had envisioned, Brian was determined to die on his feet, not live on his knees.”

This framing presumes that disability is inherently demeaning and portrays a disabled future as hopeless, redeemed only by suicide as the natural, moral, and rational outcome. This is a dangerous narrative and conclusion that we categorically reject.

According to the American Alzheimer’s Association, Alzheimer’s is not a fate worse than death. Moreover, in January 2023, the American Alzheimer’s Association issued a public apology regarding an educational relationship it had unwittingly entered into with Compassion & Choices, the leading national organization promoting the legalization of assisted suicide state-by-state. The apology reads in part:

“[Compassion and Choices’] values are inconsistent with those of the Association. We deeply regret our mistake…”

The Alzheimer’s Association then clarified the values consistent with its mission and with the interests of people living with Alzheimer’s:

“As a patient advocacy group and evidence-based organization, the Alzheimer’s Association stands behind people living with Alzheimer’s, their care partners and their health care providers as they navigate treatment and care choices throughout the continuum of the disease. Research supports a palliative care approach as the highest quality of end-of-life care for individuals with advanced dementia.”

Films like In Love and Me Before You help normalize the idea that suicide is rational and even heroic in the presence of disability. Worse, they suggest that by killing ourselves finally free our caregivers, friends, and families from the perceived burden of our continued existence. People with disabilities deserve the same robust suicide-prevention services as everyone else — not tacit encouragement to die by suicide framed as heroic dignity.

With new information comes new understanding. We recognize that these perspectives may be unfamiliar, and that the themes in In Love reflect a society that has long undervalued and underestimated people with disabilities.

However, within the disability civil rights community, there is no such ambiguity. Every national disability rights organizations that has taken a position on assisted suicide legislation opposes it, and not a single national disability organization supports it. In addition, the National Council on Disability — a bipartisan federal agency advising the President and Congress on disability policy — has warned for nearly 30 years that assisted suicide poses serious dangers to people with disabilities. In short, organizations whose sole mission is to advance the rights and quality of life of people with disabilities oppose assisted suicide advocacy organizations whose mission is to promote death as a “cure” for disability.

Mr. Clooney, on your website, the Clooney Foundation for Justice, under Waging Justice for Women, it states:

“Justice systems around the world are failing women and girls, who too often face oppression and violence simply because they are women.”

The same is true for people with disabilities:

“Justice systems around the world are failing people with disabilities who too often face oppression and violence simply because they are disabled.”

Your Foundation also states:

“Justice, like war, must be waged; it doesn’t just happen on its own,”

and

“For many of the causes we take on, it can be years before we see a clear path to justice.”

Mr. Clooney, disabled people have not been waiting for years for a clear path to justice. We have been waiting for decades.

We urge you to reconsider your involvement in In Love and to refrain from lending your influence to narratives that portray death as an acceptable or dignified response to disability. Especially at a time when proposed cuts to health care and community-based services threaten our lives and our ability to live independently, we ask that you act in recognition of our right to live full lives on our terms, rather than be offered death on someone else’s.

Surely you would agree that it is a moral failing to offer death as a solution, rather than committing the resources and political will necessary to help people live.

We are not dead yet.

Sincerely,

Access Ready
ADAPT
Alliance for Inclusive Education
Association of University Centers on Disabilities
Autistic Self Advocacy Network
Autistic Women’s and Nonbinary Network
Collectif JABS
Collectif Lutte et Handicaps pour l’Égalité et l’Émancipation
CommunicationFIRST
Deaf Equality
Disability Rights Education and Defense Fund
Distant Voices
Front de Gauche Antivalidiste
National Organization of Nurses with Disabilities
Not Dead Yet
Not Dead Yet UK
New Disabled South
Patients Rights Action Fund
Progressives Against Medical Assisted Suicide
Speak Foundation
TASH
United States International Council on Disabilities

Lankford Leads Bipartisan, Bicameral Lawmakers Urging HHS and CMS to Monitor Dangers of Physician-Assisted Suicide

WASHINGTON, DC — US Senators James Lankford (R-OK) and Tim Kaine (D-VA) sent a bipartisan, bicameral letter to Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. urging HHS and the Centers for Medicare & Medicaid Services (CMS) to establish reporting requirements in the hospice program to monitor physician-assisted suicide for discrimination against individuals with disabilities, older adults, and other vulnerable populations.

The Members warned that physician-assisted suicide “raises significant informed consent issues as well as concerns about disability and age discrimination” and noted that the vast majority of patients receiving physician-assisted suicide are enrolled in hospice.

The Members wrote in their letter, “We urge HHS and CMS to establish reporting requirements to monitor physician-assisted suicide for discriminatory practices and oversee compliance with federal funding restrictions within hospice programs. All hospice patients—regardless of disability, age or financial means—deserve compassionate end-of-life care that is free of coercion and discrimination.”

Lankford and Kaine were joined by US Representatives Greg Murphy, M.D. (R-NC-03) and Lou Correa (D-CA-46), who led the letter in the House.

“Every person has inherent worth and dignity, including those facing their final days,” said Lankford. “Hospice should be a place of compassion, comfort, and care, where the suffering are surrounded by loved ones and quality health care, not a place where they feel quietly pressured to end their lives through assisted suicide. Federal law is clear that taxpayer dollars cannot pay for assisted suicide, and discrimination against the aged and disabled is prohibited. HHS and CMS have a responsibility to make sure vulnerable people are protected. We’re simply asking them to do that job.”

“Everyone deserves to make their own decisions regarding end-of-life care,” said Kaine. “Where patients are making these choices, they should be free of discrimination and coercion. That is why my colleagues and I are calling on HHS and CMS to exercise oversight to make sure all patients are treated with dignity, including and especially at the end of their lives.”

“As a practicing physician of 35 years, I have dedicated my career to saving lives and comforting my patients, said Murphy. “The oath all physicians take is ‘to do no harm’. Physicians who take part in assisting suicide are breaking that oath. It is a great tragedy that people feel that life offers them no recourse other than to end their lives. Rather than suicide we should invest more in palliative care and hospice which are much more acceptable forms of medical care. Sadly abuses, such as the lack of informed consent and discriminatory practices, have occurred and patients and their families have been wronged. The House of Medicine should not participate in assisted suicide when we have other humane alternatives to offer.”

“All Americans deserve access to quality care, free from discrimination, and that’s why I’m joining my colleagues in urging HHS and CMS to protect patients from discrimination based on age, disability, diagnosis, or other factors when pursuing physician-assisted suicide,” said Rep. Correa. “We must have guardrails to make sure everyone receives compassionate end-of-life care regardless of their circumstances.”

In 1997, Congress passed the Assisted Suicide Funding Restriction Act of 1997, which prohibits the use of Federal funds to provide or pay for any health care item or service or health benefit coverage for the purpose of causing, or assisting to cause, the death of any individual, including “mercy killing, euthanasia, or assisted suicide.” Congress has made clear that no Medicare funds, including hospice payments, may be used to facilitate physician-assisted suicide, including physician consultation services, prescribing or dispensing of medications used for the purpose of causing death, or assistance with the ingestion of such medications.

Congress also spoke to this issue when it passed the Affordable Care Act, which also provides anti-discrimination protections for an individual or institutional health care entity that does not participate in “assisted suicide, euthanasia, or mercy killing.”

Disability Rights groups have filed lawsuits in 5 states (CA, CO, DE, NY and IL) alleging that physician-assisted suicide laws unconstitutionally discriminate against people with life-threatening disabilities because it treats them differently from non-disabled patients who report suicidal ideation to a medical provider.

Many medical organizations and disability rights groups are opposed to assisted suicide, including but not limited to the World Medical Association, American Medical Association, American College of Physicians, Disability Rights Education and Defense Fund, National Council on Independent Living, United Spinal Association, Not Dead Yet, Access Living, Patients’ Rights Action Fund, and Aging With Dignity.

The National Council on Disability, an independent, bipartisan federal agency, warns in its 2019 report, “The Danger of Assisted Suicide Laws”, that under physician-assisted suicide laws, “some people’s lives, particularly those of people with disabilities, will be ended without their fully informed and free consent, through mistakes, abuse, insufficient knowledge, and the unjust lack of better options.”

You can read more about the letter in The Hill HERE.

The full letter can be read HERE and below:

Dear Secretary Kennedy:

We write to you as bipartisan, bicameral Members of Congress in response to the Department of Health and Human Services (HHS) and Centers for Medicare & Medicaid Services’ (CMS) request for information regarding medical aid in dying (MAID), 91 Fed. Reg. 17338, also medically termed physician-assisted suicide. Physician-assisted suicide raises significant informed consent issues as well as concerns about disability and age discrimination. The vast majority of patients receiving physician-assisted suicide are enrolled in hospice—90% in Washington. This poses challenges for HHS and CMS’ regulation of patient health and safety within the hospice program. We urge HHS and CMS to implement reporting requirements in the hospice program to monitor physician-assisted suicide for discriminatory practices against vulnerable populations, as well as to ensure compliance with the Assisted Suicide Funding Restriction Act.

In 1997, the U.S. Supreme Court unanimously upheld Washington’s and New York’s bans on physician-assisted suicide in Washington v. Glucksberg and Vacco v. Quill. The majority opinions found that there is no right to physician-assisted suicide under the Due Process or Equal Protection Clauses. Justice Sandra Day O’Connor concurred, joined by Justice Ruth Bader Ginsburg and Justice Stephen Breyer, expressing concern about “the risk that a dying patient’s request for assistance in ending his or her life might not be truly voluntary.”‍ Nearly thirty years of physician-assisted suicide in the United States has not alleviated that concern.

Currently, thirteen states plus the District of Columbia permit physician-assisted suicide. These laws permit certain medical practitioners to prescribe drugs at lethal dosages to a patient that is, among other criteria, eighteen years or older and “terminally ill” with a six month or less prognosis, with or without care, so that the patient may self-administer the drugs. Yet, as the National Council on Disability, an independent, bi-partisan federal agency, warns, under physician-assisted suicide laws, “some people’s lives, particularly those of people with disabilities, will be ended without their fully informed and free consent, through mistakes, abuse, insufficient knowledge, and the unjust lack of better options.”‍

There are grave informed consent issues within physician-assisted suicide. Patients spend little time with the physician providing physician-assisted suicide relative to the course of their disease. Only 0.5% of patients received mental health referrals, even though many physician-assisted suicide patients show signs of depression, which can impair the decision-making process. On top of this, “it is common for medical prognoses of a short life expectancy to be wrong,” and under the definition of terminal illness in physician-assisted suicide laws, “[t]here is no requirement that the doctors consider the likely impact of medical treatment, counseling, and other supports on survival.”

Physician-assisted suicide drugs are not approved for the purpose of ending human life. The Food and Drug Administration (FDA) has not approved drugs indicated for physician-assisted suicide. These drugs would not meet the criteria as “safe” for purposes of the Federal Food, Drug, and Cosmetic Act. Instead, medical practitioners prescribe drugs approved for other indications to be used “off-label” for physician-assisted suicide. As The Atlantic reported in 2019, “[i]n states where the practice is legal, state governments provide guidance about which patients qualify but say nothing about which drugs to prescribe.”‍ With “no government-approved clinical drug trial, and no Institutional Review Board oversight,” physician-assisted suicide drug prescribers are left with little oversight in assisting end-of-life patients.

Disability issues also arise in physician-assisted suicide. An individual with terminal illness meets the definition of a disability under the Americans with Disabilities Act and the Rehabilitation Act of 1973. In fact, individuals with disabilities and disability civil rights groups have raised this argument and alleged physician-assisted suicide laws violate federal disability rights laws in litigation across the country. Annual state reports have shown that patients seeking assistance in ending their lives commonly do so, not due to pain or concerns about future pain, but for disability-related reasons, citing concerns about “loss of autonomy,” being “less able to engage in activities,” and “loss of dignity.”‍ 18 Consequently, many individuals with disabilities warn that states legalizing physician-assisted suicide send the message that the lives of persons with disabilities are less valued in society.

Age discrimination and elder abuse are also concerns within physician-assisted suicide practices. Most physician-assisted suicide patients are age 65 or older (86.2% in Washington). Although physician-assisted suicide laws require two witnesses to the lethal drug request, most states only require one witness to be disinterested, meaning, one of these witnesses may be a beneficiary to the patient’s will or life insurance policy or a disaffected caregiver 20 Physician-assisted suicide laws do not require a prescriber or any witnesses to be present when the patient self-administers the drugs. These circumstances enable the possibility of financial exploitation.

Physician-assisted suicide undermines America’s national posture of suicide prevention. America is facing an epidemic of suicide. In 2024, we lost more than 50,000 Americans to suicide and over 1.5 million Americans attempted suicide. Suicide is the eleventh leading cause of death in America and around 135 suicides occur every day on average. Additionally, over 14 million adults reported seriously considering suicide in 2024. Peer-reviewed data shows that where physician-assisted suicide is legalized, rates of suicide increase. Additionally, each year the U.S. government, states, and localities invest millions of taxpayer dollars in suicide prevention services. A 2024 National Institutes of Health report shows that the economic cost of suicide/self-harm is estimated at $510 billion annually. New data shows that people living with serious and potentially

life-limiting health conditions are more than twice as likely to die by suicide compared with the general population. Physician-assisted suicide undermines suicide prevention services, normalizes premature death for vulnerable populations, and pushes society away from robust care, support, and the protection of life.

Congress has restricted federal funding for physician-assisted suicide and protected conscientious objections to the practice. The Assisted Suicide Funding Restriction Act broadly limits federal funds from “paying (directly or indirectly)” for the provision of “any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing.”‍ This prohibition extends to a “pay[ment] . . . for such an item or service” and a “pay[ment] (in whole or in part) for health benefit coverage” related to the coverage or expenses of “such an item or service.”‍ The Affordable Care Act also provides anti-discrimination protections for an individual

or institutional health care entity that does not participate in “assisted suicide, euthanasia, or mercy

killing.”‍ We request that you establish reporting requirements within hospice programs regarding

physician-assisted suicide. In doing so, please consider monitoring physician-assisted suicide practices for the following:

· Discrimination against individuals with disabilities, older adults, and other vulnerable populations;

· Proper disposal of unused medication and prevention of drug diversion;

· Insurance denials of life-sustaining medical care that offer to cover physician-assisted suicide drugs instead;

· Drug complications;

· Consistency of drugs prescribed “off-label” for use in physician-assisted suicide;

· Compliance with federal restrictions on using funds, directly or indirectly, for health care items or services for physician-assisted suicide.

As bipartisan, bicameral Members of Congress who are committed to the health and safety of hospice patients, especially those in vulnerable populations, we are grateful to see HHS and CMS consider how physician-assisted suicide practices may pose discrimination and informed consent issues. We urge HHS and CMS to establish reporting requirements to monitor physician-assisted suicide for discriminatory practices and oversee compliance with federal funding restrictions within hospice programs. All hospice patients—regardless of disability, age or financial means—deserve compassionate end-of-life care that is free of coercion and discrimination.

Sincerely,

The above is a link to the Substack article published below, by Not Dead Yet (USA) Board of Directors Member and Executive Director of Toujours Vivant-Not Dead Yet (CAN), Amy Hasbrouck.

Get our words out of your mouth!

Rumour has it that the head of Dying with Dignity, Helen Long, invoked an axiom of the disability rights movement in advocating to expand eligibility for euthanasia to people whose requests arise only from a mental illness. Allegedly Ms. Long, who does not identify as disabled, criticized the parliamentary committee for not seeking input from people with mental illness who want government help to ensure fulfillment of their suicidal wishes. Specifically she said the committee had not respected the principle of “Nothing about us, without us.”

Say what?

Assuming Ms. Long doesn’t have the lived experience of disability, one would think that, as a woman living in a culture of sexualized violence, she might be able to make the solidarity connection in a more genuine way than by simply claiming it. I get it that the issues raised by euthanasia of people with psychiatric disabilities may be too specialized for folks who are not disabled survivors of childhood trauma and the mental illness that often flows from it. It probably doesn’t occur to Ms. Long that allowing MAiD for people with mental illness undermines the public policy of Suicide prevention, by allowing (often ableist) mental health professionals to judge not just the remediability of a mental illness, but also the person’s quality of life and human worth. And maybe it doesn’t occur to Dying with Dignity that inappropriate or inadequate mental health care means that people with psychiatric disabilities are requesting MAiD because they haven’t gotten the help they need, and are subject to stresses like homelessness, addiction (from attempts at self-medication), and stigmatization.

If Ms. Long really cared about disabled people, she would know that, while some disabled individuals support assisted dying, disability organizations that advocate for equality, acceptance and accessibility oppose medical killing. ADAPT and Not Dead Yet have opposed medical killing since the mid 1980s. The Council of Canadians with Disabilities took its position against legalized medical killing in 1996, at the height of public support for Robert Latimer, who murdered his daughter Tracy in 1993. Surely Ms. Long knows that disability advocates recognize and object to the belief that disabled people are (supposed to be) better off dead, and the growing popularity of assisted dying … as promoted by Dying with Dignity. She would also know that disability advocates are aware that the option to “choose” state-provided euthanasia is fast becoming a duty to die.

If she knew the first thing about ableism, Ms. Long would know that MAiD discriminates against disabled people by definition; disability is among the eligibility criteria enumerated in the definition of a grievous and irremediable medical condition. She would also know that MAiD was provided to many non-terminal disabled people even before the 2019 Truchon decision and the 2021 adoption of Bill C-7, which created “track 2” eligibility for people whose deaths were not “reasonably foreseeable.” Even if Ms. Long didn’t have the advantage of the lived experience of disability discrimination to guide her in evaluating Bill C-14, and its early implementation, anyone who claimed the solidarity of “nothing about us, without us” should have noticed what’s happened in the ten years since legalization; the failure to improve access to palliative care, the reports of same-day euthanasia and MAiD requests linked to “external pressure” (poverty, inadequate and inaccessible housing, and treatment denials) the 100,000 euthanasia deaths and the transformation of an “exceptional” measure to an “expected” response.

When people’s livelihood and self-image depends on not understanding something, they probably won’t understand it. Apparently, Ms. Long’s personal, pecuniary and political interests depend on her not knowing that it is very uncool to appropriate a disability rights principle in advocating a position the disability rights movement strongly opposes.

So please, get our words out of your (nasty) mouth.

By NDY UK’s Convenor Phil Friend. April 25, 2026, as it appeared on NDY UK’s website HERE.

Picture: Members of NDY UK and parliamentary allies in March last year, including Baroness Grey-Thompson (front row, second from right)

Yesterday, the Terminally Ill Adults (End of Life) Bill fell. Not because Parliament voted it down. Not because MPs changed their minds. But it simply ran out of time.

For those of us who have been campaigning against this bill, that distinction matters. A lot.

What Actually Happened

The bill passed through the House of Commons twice. But legislation also has to pass through the House of Lords. And in the Lords, peers tabled more than 1,200 amendments — a record, by some accounts, for a private member’s bill. Around three-quarters came from just nine peers — roughly one per cent of the Lords — who looked carefully at what was being proposed and found it deeply wanting.

Lord Falconer, who was sponsoring the bill in the Lords, called it “pure obstructionism.”

We see it differently.

The plaintiffs’ lawsuit is a direct continuation of Texas v. Beccera, a lawsuit by sixteen
U.S. states which failed to argue that Section 504 was unconstitutional. The current
lawsuit targets only HHS’ 2024 Final Rule, but plaintiffs’ commitment to disability-based
segregation is the same. In their new lawsuit plaintiffs argue that the Final Rule’s
requirement that federally funded providers offer services in “the most integrated setting
appropriate” is unconstitutional. Plaintiffs also argue that the rule’s prohibition of actions
that put people with disabilities at “serious risk” of institutionalization is unconstitutional.

Both arguments flagrantly contradict the letter and spirit of the Supreme Court’s
decision in Olmstead v. L.C. ex. rel. Zimring (1999), which mandates offering services in
the community whenever doing so is possible, despite their arguments to the contrary.
The lawsuit repeatedly mentions the “expense” of providing community-based services.
In short: the arguments attempt to defy decades of public debate on disability,
significant changes to federal law and policy and serious efforts to reform the service
system and Medicaid as a primary payer in favor of a bald-faced attempt to save money
at people with disabilities’ expense.

NDY has always focused on assisted suicide and euthanasia laws’ implications for the
broader healthcare delivery system. We believe that these laws are healthcare
discrimination and that they represent a significant threat to health equity. NDY
therefore, cannot and will not accept actions by states that treat paying for their disabled
citizens’ care in the community as a burden. Medicaid began to fully transition away
from an institutional model more than a decade ago. It is past time for the plaintiffs to ensure people with disabilities have the right to full, independent, self-determined lives with access to services.

For more information on Not Dead Yet and our policy positions, please reach out to
Kelly Israel, Not Dead Yet’s Interim Deputy Director, at kisrael@notdeadyet.org.

Please also see DREDF’s blog piece for an in-depth look into the situation as it unfolds: Texas and Eight Other States Renew Attack on Section 504 and the Right of Disabled People to Live in their Communities

In Solidarity,

Kelly Israel

Interim Deputy Director

Not Dead Yet

On behalf of the Board of Directors of Not Dead Yet, we express profound sadness at the news that legendary ADAPT organizer, first ally of Not Dead Yet, and pivotal disability rights advocate, Bob Kafka has passed away at his Austin, Texas home on December 26, 2025.

First, our deepest heartfelt condolences to Stephanie Thomas, Bob’s partner. During this difficult time, we will not forget their important work, instrumental in shaping attitudes and policy in Texas and across the nation, that true inclusion of people with disabilities benefits all of society.

In the coming days, we will provide a longer entry, but for now, please find below from Bob Kafka’s long running podcast, Barrier Free Futures, part of an interview between Not Dead Yet’s late Foundress and President, Diane Coleman, and Bob Kafka. It was Bob who came up with our organization’s name, “Not Dead Yet,” as detailed below:

Bob Kafka:

…But when did you start Not Dead Yet? And it really – that name is sort of grabbing. How did that begin and what is the mission of Not Dead Yet?

Diane Coleman:

Well, I started it on April 27, 1996, so, that’s almost 24 years ago now. And, it was actually, a number of people had been talking to me about starting a group like that. But it was actually, Bob, when I came up to you at a disability policy conference and you said, “Well, I got an idea for a name for your group.” You’d been hearing about it and it was out of Monty Python and the Holy Grail, “Not Dead Yet.” That kind of made it happen. I actually made a little sign with the words “Not Dead Yet” and I went around and got people to sign on to some testimony. It was my first time testifying in Congress. There were all kinds of people there that signed on that are very well known. Disability advocates like Justin Dart, Judy Heumann, and so forth. But it was actually you giving me the name that got it going.

Bob Kafka:

It’s funny because if people haven’t seen The Life of Brian, it’s actually in a very bizarre way, very relevant in that, in that movie it’s during the plague and it’s throwing bodies on this cart and there’s a guy who is driving the cart and the bodies are supposed to be people who have died but they keep popping up and he hits them with a hammer, and they keep popping up and say, “Not dead yet”…”

*  *  *  *  *  *

In September, Bob had asked me to appear on Barrier Free Futures, but owing to a scheduling conflict where I had been previously scheduled to return to Canada, I was unable to be interviewed by the great man. We had purposed to circle back and reschedule a time to talk when it was mutually convenient. I had hoped for early in the new year.

Another reminder, that in everything we do and say – and think – in this common fight, that everything we can do now…we should.

From the Andrew Weber article linked above, for KUT Radio, NPR’s Austin Station:

“For Armbruster, he can’t help but hear Kafka’s other mantra, one that served as his email signature: “Don’t mourn, organize.”

“It’s kind of ironic in this situation with him passing, but I’m sure that’s what he would want us to do,” Armbruster said, “to lead on and to move on and to continue the fight.”

Onward,

Ian McIntosh

Executive Director

Not Dead Yet.

Eileen Mihich deserved better.

Aging With Dignity has put out a powerful, short film that further dispels the disingenuous claims by ableist proponents of assisted suicide laws that there has never been a single instance in which safeguards have failed. To the assisted suicide proponent question: Where is the evidence of abuse, coercion and error? The Tragedy of Eileen Mihich is an emphatic: Here it is!

For many outside of the disability community, the concept of disability bias and medical futility is difficult to grasp, in the rare instances it’s known of at all. Medical futility and assisted suicide are stems from the same disability bias branch which sees disabled lives as lives not worth living. Assisted suicide legislation, where the state enacts so-called healthcare policy that calls and provides death a cure, is merely the monstrous culmination of disability bias, albeit discharged by a delivery system on a much larger scale, but from the same eugenical engine. Whether it’s denial, delay or direction toward assisted suicide as an equivocal option to a legitimate cure, the tragedy of Eileen Mihich is not unlike that of Michael Hickson where the perception of life with a disability is devalued as a life worth less, a worthless life and better off dead.

Eileen was devalued by her family first, and then the system. Eileen needed protection from her family owing to abuse and neglect and trauma from a young age. Into adulthood, Eileen suffered from severe mental illness and still needed protection, delivered in the most caring, compassionate manner possible.

Instead, Eileen was abandoned by our broken healthcare system, and once she set her foot into the proverbial doorway of the assisted suicide enterprise, she was pulled in, and the very safeguards that proponents assured would save Eileen, disappeared. According to Eileen’s Aunt Veronica, so did assisted suicide proponents when tasked to stand by their assurances. She noted that for Eileen: “It wasn’t that hard for her to exploit [the so-called safeguards] and that’s really dangerous.”

During the film, there is a clear pattern provided by Eileen’s Aunt, in which time after time, whether it was the death doula, the pharmacist or those in professional assisted suicide advocacy organizations, Eileen, an obviously conflicted young woman with severe mental illness, is repeatedly abandoned. She is never seen as a life worth saving, but rather, an opportunity to validate the idea that suicide is rational if you happen to have a disability.

Eileen was sad. But even in her darkest moments, Eileen texted: “I don’t actually want to die.”

Eileen’s Aunt ultimately concluded: “I place more guilt on the Death With Dignity people.”

She added that this organization (who campaigned on promises of assured safeguards), didn’t respond in a way that could be seen as human, didn’t want to take accountability, weren’t shocked and didn’t appear to hold the view that Eileen’s death and the circumstances surrounding it, were unacceptable.

A conclusion that’s hard to argue against when the history of assisted suicide legislation demonstrates that once an incipient bill is passed, so-called safeguards turn into barriers that must be removed in order to provide “meaningful access”.

She added, “The road to hell is paved with the best intentions” at the end of an observation in which she believes that Washington’s Death With Dignity Act was conceived and launched with the best of intentions, and yet despite those intentions, failed Eileen.

What Not Dead Yet, and the other disability rights organizations who have been fighting assisted suicide legislation for decades have been repeating, is that the instance a bill is passed, the bait and switch follows. And at every opportunity, we have countered proponent narratives that there has never been a single instance of abuse, coercion or error. In order for their claims to fail, abuse, coercion or error only has to happen once. And of course, as we know, it has happened multiple times, here in America and in other international jurisdictions.

At the writing of this blog, New York Governor Kathy Hochul has joined fellow Democrat Governor of Illinois, J.B. Pritzker in allowing assisted suicide to endanger their states’ most vulnerable people. Both mentioned signing bills on the condition of safeguards. As an example, in New York, a few key protections listed that will go into the bill are: Limiting access to New York residents and mandatory mental health evaluations by a psychologist or psychiatrist.

But Eileen Mihich died under Washington’s Death With Dignity Act despite not being a resident of Washington state and despite not having received a mandatory mental health evaluation by a psychologist or psychiatrist (amongst other compromised safeguards) and yet still gained access to lethal drugs which she clearly conveyed she intended to use to kill herself.

The Tragedy of Eileen Mihich is a must-see and reaffirms the fact that assisted suicide laws are not designed to maintain initially advertised safeguards, which have never worked, and will never work.

It is a mistake to believe that the intentions of professional assisted suicide advocacy organizations aren’t to create laws that don’t resemble those run amok in other “jurisdictions” like Canada and the Netherlands, where assisted suicide is either poised to be offered where mental illness is the sole criterion, or is in full systematic flight.

And as such, it is a horrifying but necessary realization to understand, that in this space, for some, Eileen’s death was acceptable, and worse: it was deemed right and rational because she was disabled.

Ian McIntosh

Executive Director

Not Dead Yet