Ableism and Social Engineering: If You Know, You Know: Rumour Has it, Euthanasia Proponent Uses “Nothing About Us Without Us!?”

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“Nothing about us without us”

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.

May the Fourth Be with You: UK Assisted Suicide Bill Expires: NDY UK Ready for the Next Fight.

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Time Ran Out. But the Fight Didn’t.

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.

 

Scrutiny Is Not Obstruction

The House of Lords exists, in part, precisely to do this — to slow things down, ask difficult questions, test whether legislation is fit for purpose. And this bill needed testing.

 

Its opponents in the Lords identified serious gaps. Gordon Macdonald of Care Not Killing described it as “skeleton legislation riddled with gaping holes.”

 

That’s a description we recognise.

 

Not Dead Yet UK has consistently argued that this bill is dangerous for disabled people. Not because we don’t believe in personal autonomy — we do, passionately. But genuine autonomy requires genuine choice. And that means disabled people must not be pushed, however subtly, towards death because our lives are seen as less worth living, because care is hard to access, because we feel like a burden.

 

These are not hypothetical concerns. They are the lived experience of many disabled people right now.

 

A Word of Thanks — and a Word About How Peers Were Treated

We want to say something directly to the peers who scrutinised this bill.

 

Thank you.

 

For taking disabled people’s concerns seriously. For asking the hard questions. For refusing to let flawed legislation pass without proper examination. Baroness Jane Campbell, Baroness Tanni Grey Thompson, Baroness Ilora Finlay and others stood with us when it would have been far easier not to. That took courage.

 

Because they paid a price for it.

 

Many were publicly branded as obstructors of democracy. A campaign group rallied outside Parliament under the banner “Democracy Must Prevail.” Over 200 MPs signed a letter accusing them of “deliberate delaying tactics.” Peers doing their constitutional job were cast as villains.

 

As disabled people — people who know what it is to be dismissed and talked over — we find that treatment abhorrent. Scrutiny is not obstruction. And peers who take disability seriously deserve far better than to be publicly denounced for it.

 

It’s Coming Back

Let’s be honest. This is a pause, not a full stop.

 

Kim Leadbeater has already said she will try again in the next parliamentary session. There is also talk of using the Parliament Acts, which could, in time, allow the Commons to push legislation through without the Lords’ approval. The pressure to change the law has been building for years, backed by well-funded, well-organised campaigns. One setback will not stop it.

 

We knew this from the start. Not Dead Yet UK has always been in this for the long game. We go into the next phase, building our network, strengthening our strategy, and learning from what the Scottish Parliament showed last month — that sustained, well-organised opposition can win.

 

Stay With Us

The news cycle will move on. The bill’s supporters will regroup and come back. We need to be ready — and that means we need you.

 

Get on our mailing list if you’re not already. Follow us on social media. And if you’re a disabled person with a story to tell or a family member, carer or ally who wants to get involved — please get in touch. Your voice matters more than you might think.

 

This is a long game. We are in it for the long haul.

 

Not Dead Yet UK is a disability-led organisation. We oppose assisted suicide and assisted dying laws as forms of disability discrimination. We are secular and independent.

 

Not Dead Yet Condemns Lawsuit Attacking Community Living

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Not Dead Yet (NDY) writes to express our strong opposition to the lawsuit Texas v.
Kennedy and its goals. Texas and nine other states (Alaska, Florida, Indiana, Kansas,
Louisiana, Missouri, Montana, and South Dakota) have decided to spend taxpayer
dollars undermining people with disabilities’ right to community living. Members of the
independent living movement founded NDY. We share their commitment to equality and
freedom for people with disabilities. By attempting to destroy Section 504’s
deinstitutionalization framework, state plaintiffs do the opposite.

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

In Memoriam: Bob Kafka: Pivotal National Disability Rights Advocate Passes Away at 79

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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.

The Tragedy of Eileen Mihich: A Woman with Mental Illness Abandoned by the System into the Waiting Jaws of Assisted Suicide.

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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