Diane Coleman Inducted Into New York State Disability Rights Hall of Fame Class of 2025

From Albany, New York, Tuesday September 16, 2025:

 

In collaboration with the 2025 New York Association on Independent Living’s (NYAIL) statewide conference, the New York State Independent Living Council (NYSILC) held its sixth New York State Disability Rights Hall of Fame awards ceremony and dinner, and Not Dead Yet’s Founder and CEO, Diane Coleman, was the first of the night to be honored with a posthumous award “For lifelong achievements which positively impact people with disabilities in society.”

For those who couldn’t attend the awards ceremony and dinner, the Patients Rights Action Fund’s (PRAF) Executive Director, Matt Vallière, and NDY’s Executive Director, Ian McIntosh, accepted the award on behalf of Diane Coleman who passed away suddenly, last November 1, 2024.

Also, please find NDY’s acceptance speech directly below:

NDY’s acceptance speech:

I know if Diane were here to receive this award, on behalf of NDY’s Board and Staff, and with gratitude, that she would turn to Matt and thank him for his friendship and his fight in this arena, so, thank you, Matt, and thank you to all involved in honouring Diane tonight.

Matt asked: Why did Diane care so much about the Community in the face of so many other pressing issues? In addition to Diane’s peerless dedication and results, already mentioned, I think there’s something else to be gleaned from Diane’s own words in remembering disability rights champion and dear sister-in-arms, Marilyn Golden. A couple of years ago, Diane wrote:

“The things we almost never mentioned were science fiction, music from our younger days and favorite TV shows. I really wish we had. I can imagine the great fun we could have enjoyed over those things and I’m sorry we didn’t. Still, I’m so glad she made room for all those things and so much more in her beautiful life.”

For Diane, in fighting for access, in pushing against the profit margins of big pharma and big insurance in order to cross the finish line as full citizens, the reason Diane cared so much about the community stems precisely from the word we remember Diane with tonight: Honour; Not honour as merely the act of fondly remembering, but in the repeated daily example of self-sacrifice for something of priceless value, like a life with room for beautiful friendships, and time to spend together laughing without worrying about basic needs being met.

Diane refused to let this war be sidelined by other battles. She knew that if we lose this one, all the other ones will be lost, too, because accepting Assisted Suicide and inevitably Euthanasia laws, is to accept ableist notions that suicide is rational just because you have a disability, or that disabled lives are worth less than nondisabled ones. And if we accept that proposition, then there’s no end to the horrors that other ableist policy areas can and will provide.

 Michael Hickson’s life and death warned us. The recent HHS announcement that they’re investigating what appears to be a practice of harvesting organs from people with newly acquired disabilities who were given up on or whose signs of life were ignored to obtain something deemed more valuable than a disabled life — an organ from that disabled person — that announcement warns us. Diane warned us.

The name Not Dead Yet, as some of you may know was taken from a British comedy, a Monty Python movie about the crusades. Not Dead Yet is the name of Diane’s organization, and certainly referential in part to the idea that humour in the face of unjust authority is a good thing. But to be clear, with over 60 arrests to her credit, every time Diane mentioned the name Not Dead Yet, it was a taunt, a challenge: To ableist proponent activists and lawmakers, and those in the healthcare community that champion medical futility and disability bias. Not Dead Yet is a way of saying in the fight against assisted suicide laws – as Sparsh Shah compressed so wonderfully – that “We are Disabled but We are Unbreakable.”

However, wherever, whenever, as you can, join us in this fight for our lives.

Diane, we love you.

May we be forever in your debt.

On behalf of Not Dead Yet, sincere thanks to: Laura Cardwell, Executive Director of NYSILC; Lindsay Miller, Executive Director of NYAIL; Yaw Appiadu, Executive Director of Harlem Independent Living Center and Chair of NYSILC; Mariah Sepulveda, Honorary Committee Chair and everyone at the Albany Capital Center who made the night such a resounding success.

Congratulations to inductees: Christian Curry, Doug Hovey, Bryan O’Malley and Sharon Shapiro (Lacks) – all of whom acknowledged Diane Coleman’s immeasurable contribution to their own work – delivered speeches filled with wisdom, laughter, tears and hope for a New York and an America where disability advocacy emerges from the shadows and onto the forefront of American civil rights discourse.

From the NYS Disability Rights Hall of Fame awards program, Yaw Appiadu, Chair of NYSILC noted so poignantly of the night’s imminent inductees: “Their legacy lights the path forward toward a more just and inclusive future for all.”

The last words are always Diane’s:

“The official data shows that everyone who dies by assisted suicide is disabled, some terminal, some not, and their reasons are unmet disability related needs, especially for in home care. Enough is enough. Now, with our federal civil rights laws, the ADA, Section 504, and the Constitution, we’re going to fight this most deadly form of disability discrimination. We are Not Dead Yet.

 

 

In Solidarity,

Ian McIntosh,

Executive Director for Not Dead Yet.

Diane Coleman’s Last Review: Life After: “A wonderful film.”

 

 

To the best of my knowledge, one of the last tasks Founder, President and CEO of Not Dead Yet (NDY), Diane Coleman completed, days before her sudden passing last November, was to watch Reid Davenport’s Life After.

Diane intended to write a fulsome review. And although she could not publish her thoughts in time, she left one of sorts, complete in its brevity, in an email to the film’s creators, saying that Life After is: “a wonderful film”.

In this arena and in our community, there’s no higher praise.  As Diane’s successor, serving as the Executive Director of NDY, and as a self-confessed cinephile, having seen the documentary several times now, I can confirm that like everything else Diane weighed in on: Of course, she’s right. Life After is a wonderful film for too many reasons to expand upon here and now.

But Multimedia Films, the production house for Life After, notes on its website a synopsis of the documentary, which in part reads:

“In 1983, a disabled Californian woman named Elizabeth Bouvia sought the ‘right to die,’ igniting a national debate about autonomy and the value of disabled lives. After years of courtroom battles, Bouvia vanished from public view. Sundance-winner Davenport embarks on a personal investigation to find out what really happened to Bouvia and reveal why her story is disturbingly relevant today.”

Briefly, although the documentary is primarily about Elizabeth Bouvia, Reid Davenport – a disabled filmmaker – masterfully unveils a singular disability rights fight hidden in the collective memory of Elizabeth’s family; in the unsuspecting life of a middle-class Canadian with disabilities navigating that country’s eugenical healthcare enterprise; and in the eternal echo of Melissa Hickson’s reasoned pleas with the ableist physician of her late husband, Michael, and the entrenched disability bias in health care that helped to ensure his life end early.

Mrs. Hickson’s involvement with the film is particularly poignant. The story of Michael Hickson dismantles the insincere rhetorical question proponents of decriminalized assisted suicide and euthanasia so often ask in hearings, lobbying meetings, and in online communications – Where is the record of coercion and abuse? Michael Hickson’s story provides exclamation points in this argument against discrimination by demonstrating that ableism can and does kill through a multitude of delivery systems in health care. And that that pernicious form of ableism has never needed explicit laws to rationalize that a disabled life is worth less than those without disabilities. Assisted suicide laws don’t provide the “right to die” any more than voting rights provide the “right to think” or a fishing license provides the “right to breathe”. Assisted suicide laws are immunity laws that protect those preying upon society’s most vulnerable.

From 2021, the below provides a brief glimpse into the sequence of events that eventually led to the wrongful death and disability lawsuit filed in the Michael Hickson case, :

“Antibiotics were initially provided, and lab results determined they were effective. Mr. Hickson’s physicians even identified the specific bacterial organism at the root of his infection.  Yet, only three days later, they abruptly withdrew the antibiotics and all life-sustaining treatment, designated Mr. Hickson as Do Not Resuscitate and placed him in hospice. When pressed for an explanation as to why they would not treat him, in a legally recorded conversation, Dr. Viet Vo told Mrs. Melissa Hickson, “as of right now, his quality of life, he doesn’t have much of one.” Dr. Vo then distinguished Mr. Hickson from other of his patients who were being treated aggressively for COVID–19, “his quality of life is different than theirs. They were walking, talking.”

Life After, like very few film experiences demand these days, takes Marshal McLuhan’s maxim “the medium is the message” and synthesizes our preferred slogan, “Nothing About Us Without Us” into a singular remarkable experience, where the director, the film, the subjects, their stories and their lives convey in kind and in distinction with our own. Or as this recent Democracy Now! article quotes Davenport on the film:

“This film is not about suicide. It’s about the phenomenon that leaves disabled people desperate to find their place in a world that perpetually rejects them.”

Halfway through its present theatrical run, with ten more virtual showtimes and five more cities for people to screen and attend the film, Life After’s schedule can be found HERE.

Positive reviews continue to roll in, from disabled and nondisabled viewers alike. For the former, disabled people have conveyed how powerful it is to have their concerns and experiences affirmed and represented on screen. From nondisabled people, Life After has been a perspective changing experience about the disability experience and the inherent discrimination assisted suicide laws pose in a world where disabled people have never been given full citizenship.

Reid Davenport’s most important film to date is a film of its time for all-time. It is ground gained, history revealed, and a gentle voice to the dark thoughts that say assisted suicide is rational just because you have a disability.

 

For Diane,

Ian McIntosh

Executive Director

Not Dead Yet

Coming Soon: In Honour of the 35th Anniversary of the ADA: Film, “Thoughts on Medical Assisted Suicide” to Stream Online July 23rd-30th, 2025

“Thoughts on Medical Assisted Suicide” to stream online July 23rd-30th, 2025

In honor of the 35th anniversary of the Americans with Disabilities Act (ADA), which was signed into law on July 26, 1990, the new 36-minute film, “Thoughts on Medical Assisted Suicide” will be available for viewing online at Https://pamasprogressives.org from Wednesday July 23rd through Wednesday July 30th.

The 36-minute film, recently produced by Progressives Against Medical Assisted Suicide (PAMAS) and Karyl Evans Productions LLC, considers the historical context, current practice, and impact on health care of enabling medical providers to offer lethal drugs to patients for the purpose of ending their own lives.

With poetry and song written and performed by a West Haven, Connecticut-based poet, songwriter, and performance artist, Elaine Kolb, the film includes interviews with disability and social justice activists including Anita Cameron of Rochester, New York, former Director of Community Outreach at Not Dead Yet; Jules Good, programs coordinator of the Autism Self Advocacy Network and the founder and director of Neighborhood Access LLC of Barrington, New Hampshire;  nationally and internationally recognized palliative care specialist Dr. Diane Meier, professor at the Mt. Sinai School of Medicine;  retired Connecticut disability rights attorney Nancy Alisberg; and five local community activists. The film is narrated by Scott Harris, with ASL interpretation by American School for the Deaf Community Interpreting.

The Americans with Disabilities Act (ADA) made history as the world’s first comprehensive civil rights law for people with disabilities. “Legalizing and normalizing medical assisted suicide is a direct threat to the disabled and the vulnerable,” noted Joan Cavanagh, a founding member of PAMAS, “so the film is very relevant to this important anniversary.”

A lawsuit was recently filed in Colorado to overturn that state’s assisted suicide law by a coalition of national and Colorado-based disability and patient advocacy groups. The plaintiffs argue that the Colorado assisted suicide law violates core protections under the U.S. Constitution and federal civil rights laws, including the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act. In 2023, four disability justice groups filed a lawsuit to overturn California’s assisted suicide law as a violation of the ADA. That lawsuit was dismissed in court, but the decision is being appealed.

Progressives Against Medical Assisted Suicide was founded in 2021. Its goal is to help build a progressive, disability and human justice-based movement to prevent the legalization of medical assisted suicide and euthanasia and to end these practices where they exist. Its mission statement says: “We believe that the people who stand in the greatest danger of being further victimized by Medical Assisted Suicide are the poor, elderly, disabled, and people of color who are already marginalized, devalued, and threatened daily under the current medical system.

“We stand for economic and civil justice; universal, comprehensive, quality, and unrestricted healthcare for all; reproductive rights; and justice and safety for LGBTQIA people. We work to open a path for our fellow progressives who share these values to also recognize the dangers of medical assisted suicide and euthanasia and to join us in opposing these practices.”

“Thoughts on Medical Assisted Suicide” premiered at the Miller Library in Hamden, Connecticut, on March 25th and has since been shown at five other venues in Connecticut. Future showings are being scheduled, and the film is being distributed nationally. The goal is to foster discussion and question and answer sessions with audience members.

There is no registration required or charge for viewing the film.  PAMAS requests that viewers fill out the anonymous survey which will be available on the site.

Please contact PAMAS at progressivesagainstmas@hotmail.com or joan.cavanagh@gmail.com if you know of a venue that might be interested in a future showing and discussion of the film.

For more information, visit the website at Https://pamasprogressives.org.

“Thoughts on Medical Assisted Suicide” was partially funded by the Haymarket People’s Fund and the Community Foundation for Greater New Haven, with support from the Patients’ Rights Action Fund and Not Dead Yet, and fiscal sponsorship from the Arts Council of Greater New Haven and the Center for Disability Rights, New York.

DOVIE EISNER FIGHTS FOR HIS LIFE AND OURS: 34-Year-Old Disabled New Yorker Calls on Governor Hochul to Act with Supreme Political Courage and Veto the Worst Law of its Kind.

The article linked below published on The FREEPRESS on June 15, 2025, was first published by and written for UnHerd, May 14, 2025:

 

In The FREEPRESS article linked below, Madeline Kearns, a reporter who has previously covered assisted suicide and euthanasia legislation, provides a compelling introduction to  New York’s challenging situation, and Dovie Eisner. Presently in hospital fighting for his life, the 34-year-old New Yorker who initially urged the New York Senate to reject S 138, now calls upon Governor Hochul to veto what many are calling the worst law of its kind.

In her preface, Kearns writes:

In my reporting on the subject, I have spoken to people with devastating diagnoses who long for greater agency at the end of life. I have also spoken to others with severe medical conditions who fear a world in which euthanasia is seen as a treatment option by doctors. But my thinking about this topic has been profoundly shaped by one person in particular: my friend Dovie, a 34-year-old New Yorker who lives with a life-altering, and sometimes life-threatening, condition called nemaline myopathy.”

In case you missed it, Dovie’s article below is a must-read reflection.

By Dovie Eisner

I’m a Disabled New Yorker. I Hope the Governor Vetoes Medical Aid in Dying.

‘Me Before You’ Is Not A Euthanasia Flick

Photo Credit: The Federalist.

“I was alive — thanks to the determination of law enforcers and local medical personnel to keep me that way.” – Dovie Eisner

 

 

 

Does Not Go Far Enough: Thaddeus Pope Gives Delaware Assisted Suicide Law a Middling Grade

By Lisa Blumberg

Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.

Lisa Blumberg

 

The traditional strategy of groups promoting assisted suicide for initially passing a law legalizing the practice is by touting a few minimal requirements as inviolable safeguards. Assisted suicide, they assert, will be a rarely used option for a small, well-vetted cohort of people who are dying, suffering and with no remaining alternatives who have thought long and hard about their decision. As Jason Negri, policy advisor for the  Patients Rights Action Fund has said, this is “a calculated move to garner support from people who are uncertain about assisted suicide.”

Then after a law is enacted – usually after multiple unsuccessful efforts – proponents suddenly become concerned with “access” by which they mean making it easier for life-ending prescriptions to be written. Requirements once described as safeguards such as a waiting period between requests or the need for two doctors to concur on eligibility are chipped away at. It has happened in virtually all of the handful of states where these laws have been passed.

Some supporters are candid about this strategy.  Josh Elliott, a Connecticut legislator and proponent of legalized assisted suicide has said that getting any assisted suicide law regardless of what it says   enacted, “would open the door to evaluation and expansion.” (Connecticut to date has not been able to get an assisted suicide law through the legislature).

However, other supporters flushed with a few victories are getting impatient with this incremental approach. They want to go whole hog right from the get-go. In this  spirit, ethicist Thaddeus Pope grades  the newly enacted Delaware Assisted Suicide law on access based on four expansionist criteria.   He gives it two Ds, a B+ and A for an overall grade of a B.

He is quick to point out that his grading is on a curve. He is only comparing Delaware to other assisted suicide laws in the US. He is not comparing it to the laws he really admires, and thinks are the eventual way of the future such as those in Belgium and Canada that permit euthanasia for any willing person with “grievous and irremediable medical condition” regardless of whether they are terminally ill. If he did that, Delaware’s grade would be quite a bit lower.

 Delaware’s only A  is in following expansionist West Coast assisted suicide states to permit advance practice nurses as well as doctors to determine a person’s eligibility for assisted suicide and write lethal prescriptions.

My take: This gives short shrift to the complexity in judging life expectancy and implies that assisted suicide is an ordinary medical procedure like wrapping a sprain. It also expands the pool of people who could derive a livelihood from the legalization of assisted suicide.

Delaware earns a D for requiring state residency, but Pope thinks this requirement may be short lived. 

My take: Dispensing with a residency requirement reinforces the misperception that assisted suicide is healthcare and eligible people should be able to seek it. It also directly advances the commercial interests of the assisted suicide industry in the state. Assisted suicide practitioners are always front and center in challenging residency requirements.

Pope also gives Delaware a D for requiring a 15-day waiting period between separate requests for a lethal prescription. Most West Coast assisted suicide states have reduced the waiting period to 48 hours or less.

My take:  A truncated or non-existent waiting period again reinforces the misperception that assisted suicide is healthcare.  It belies what a profoundly shattering and irreversible thing it is to cause death.

Delaware earns an B+  on what Pope call transparency. Delaware requires opting out facilities to provide notice to the public of that fact, but Pope says that “it remains to be seen if this will be well-regulated like Colorado or laxly regulated as in California.”

My take:  By well-regulated, Pope seems to mean consistently enforced and it is here that Pope really shows his bias.  He doesn’t seem overly concerned with the touted “safeguards” of the act.  He supports provisions which undercut them.  In a recent blog, he dismisses the possibility of assisted suicide drugs being ingested by a person other than the patients to whom they have been prescribed as an ordinary healthcare risk. (He acknowledges that instances of this has occurred).  Yet, he is concerned about enforcement of a provision that essentially amount to free advertising for the assisted suicide industry and subliminal suggestion, i.e. our facility does not provide this type of thing,but you may be able to get it elsewhere.

Since we are talking about grades, we might as well talk about lessons. So, what is the lesson here? Many proponents are dissatisfied with the “basic” assisted suicide bill, even as they navigate political constraints and so put in minimal restrictions. They want to normalize assisted suicide by portraying it as healthcare. It is not enough for them to legalize assisted suicide and eventually euthanasia. They went to facilitate the practice of it. They want a swath of the population to die that way. They just don’t say why.