In Memoriam: Diane Coleman

Dear Not Dead Yet Family, Allies, and Supporters,

It is with heavy hearts and deep sorrow that we announce the passing of our beloved founder and leader, Diane Coleman. Diane’s legacy as a tireless advocate for the rights of people with disabilities, and as a fierce and unyielding voice against assisted suicide and euthanasia, will forever shape our movement and the world we strive to change.

Diane founded Not Dead Yet in 1996, establishing a national disability rights organization committed to fighting for the inherent dignity of every person with a disability. Through her vision and leadership, Not Dead Yet grew into a powerful force for justice, protecting our right to live and ensuring that disabled lives are valued, respected, and protected from discriminatory medical practices, including the non provision and forced removal of life sustaining care, QALYs, and most of all, the inherently discriminatory public policy of assisted suicide and euthanasia law. Her work was visible not only in the courts, boardrooms and legislatures the halls of legislative chambers but also on the streets, where she led protests, organized, and mobilized countless other disabled people people with disabilities from across the globe to fight for their rights.

Diane was an intellectual powerhouse, a strategist, a passionate advocate, and a mentor to so many of us. Her understanding of policy, her commitment to the principles of the social and disability justice models of disability, and her ability to cut through the ableist rhetoric surrounding assisted suicide and euthanasia were unparalleled. She spoke with clarity and conviction, both in the media and in legislative hearings, where she presented testimony before Congress, co-authored amicus briefs in state, federal and Supreme Court cases for the U.S. Supreme Court, and tirelessly worked to ensure that the voices of disabled people were heard and respected in the development and implementation of public policy.

As many of you have shared, Diane’s impact on individuals—colleagues, activists, students, and friends—was profound. She shaped the lives of so many, whether through direct mentorship or through the sheer force of her example. Diane was a leader who never wavered in her commitment to the movement. Her strength was, in many ways, a beacon for all of us who continue the fight for freedom, dignity, equality and inclusion of people with all kinds of disabilities, as well as women, elders, LGBTQ+, BIPoC and other marginalized populations.

Diane’s legacy will endure through all the work that continues in her name—through the Not Dead Yet community and through the work of every person whose life she touched. She built a movement that will not stop fighting, and she taught us to mourn for the dead and fight like hell for the living.

While we grieve her loss, we also celebrate her extraordinary life and the powerful mark she left on the world. Diane was a friend, a teacher, and a champion of justice. Her spirit, her intellect, and her fierce commitment to disability rights will live on in each of us who continue the work she began.

Our deepest condolences go out to Diane’s family, her colleagues, and to all who loved her. We stand united in our grief, but also in our commitment to carry on Diane’s work. Rest in power, Diane. Your legacy is eternal, and the fight for the rights of disabled people will continue in your name.

With Love and Solidarity,

The Board of Not Dead Yet

Emily Wolinsky, Chair
Samantha Crane, Treasurer
Lydia Nunez Landry, Secretary 
Horacio Esparza
Amy E. Hasbrouck
Germaine Martin
Michael Volkman

 

Pam Heavens: Do not support legalizing physician-assisted suicide

The Times Weekly published this opinion letter by Illinois disability advocate Pam Heavens on October 2nd:

The Illinois General Assembly is considering a bill that will legalize physician-assisted suicide. I am a 68-year-old Disabled woman and proud member of “Stop Assisted Suicide Illinois Coalition”, which vehemently opposes this bill. This organization includes representatives from diverse communities including disability rights, patients’ rights, health care, hospice care, human rights, senior rights, veterans, and various faith- based advocacy organizations. All parties are committed to keeping Illinois a physician-assisted suicide free state.

Since our health care system does not treat everyone equally, the practice of physician – assisted suicide raises the risk for those who often do not get the same access and treatment as others. This includes people with disabilities, veterans, people with mental illness, older people and those who cannot afford high-quality health care. How this manifests in the health care system is illustrated in the movie “Million Dollar Baby,” which feeds into the attitude that many non-disabled people who become disabled are then “better dead than disabled.”  Disability and poverty are two major factors that have the potential of making assisted suicide seem desirable. Regarding mental illness, none of the physician-assisted suicide laws have strong requirements that a person seeking it be evaluated by a psychiatrist.

The doctor/patient relationship is sacred. It is a bond that is strengthened by mutual trust. Legalizing physician-assisted suicide irrefutably erases that trust. Illinois lawmakers must unequivocally reject legalizing doctor assisted suicide. To do less will leave a stain on our state of which we all will be ashamed.

 

Jensen Caraballo: The Misguided Compassion of Assisted Suicide in Disability

Head and shoulders photo of man with short dark hair, tan color skin, blue "Free Our People" shirt, and rectangular glasses secured by a black strap showing on his left side.
Jensen Caraballo

Introduction

Assisted suicide is often presented as a compassionate choice for those experiencing unbearable suffering. However, as someone who has navigated life’s challenges as a disability rights advocate and someone who was once confined to a nursing home, I see a troubling oversight in this narrative. It fails to consider the systemic barriers that prevent many disabled individuals from living full, dignified lives. This is true whether the disabling condition is viewed as terminal or not. This post explores how the discourse on assisted suicide overlooks critical issues of rights and inclusion in the disability community.

Section 1: Misconceptions about Disability and Assisted Suicide

Society frequently views disabled people as burdens. This perspective is not just harmful; it’s a reflection of deeply ingrained prejudices. Advocating for assisted suicide often comes from a place that views the elimination of disabled lives as a convenience to society. From personal experience, having lived in an institution from a young age, I know the feeling of being seen as a problem rather than a person with potential and desires. This worldview underpins the argument for assisted suicide, ignoring the intrinsic value every individual holds.

Section 2: The Real Issue: Lack of Choice and Autonomy

Proponents of assisted suicide tout it as a choice for those who find living with a disability unbearable. However, this ‘choice’ often comes without real alternatives for living a life of dignity. Many disabled individuals, including myself, face inadequate healthcare, insufficient access to necessary services, and exclusion from community involvement. When I was institutionalized as a teenager, not only was my physical freedom limited, but so were my choices for a future outside those walls. The supposed freedom offered by assisted suicide is a false choice, arising from unmet needs and societal neglect.

Section 3: The Impact of Societal Attitudes

The push for assisted suicide reflects a broader societal desire to manage or exclude those considered too challenging to support. This attitude devalues lives based on disability, suggesting some are less worth living. By endorsing assisted suicide without confronting these underlying biases, society perpetuates a message that fails to affirm the value of every individual, including people who have a terminal illness as well as those who don’t. As someone who fought hard to escape institutionalization and advocate for independent living, I see this as a failure to commit to real inclusivity and support.

Section 4: What We Truly Need: Freedom and Support

The disability community doesn’t need an easier route to death; we need robust support systems that affirm life, however long that may be. This includes extensive home and community-based services that have enabled me to live independently, policies that ensure educational and employment opportunities, and a healthcare system responsive to our needs without bias. Advocating for these changes isn’t just about improving lives; it’s about transforming societal views and expectations around disability so we can all make the best of the time we have.

Conclusion

Disabled individuals deserve the same rights to life, liberty, and happiness as anyone else. Our societal focus should be on removing the barriers that curtail these rights, not on facilitating an exit from life’s challenges. We must advocate for policies that genuinely uphold the dignity and independence of all people, drawing from stories like mine to illustrate the profound impact of true support versus the finality of assisted suicide.

Closing

As we consider the future of our society, we must decide: Will we view disability through a lens of inconvenience and burden, or will we embrace every member with equity and respect? The path we champion will fundamentally shape the community we build.

Jensen Caraballo is a disability justice advocate, writer, and activist who opposes assisted suicide laws, emphasizing their dangers to the disabled community and advocating for dignity, autonomy, and comprehensive support for all.

When Disaster Strikes Everyone, the Partnership for Inclusive Disaster Strategies Is There for Us

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

In a widespread disaster grievously impacting people in general, people who happen to have disabilities tend to be invisible. This may partly stem from the “better dead than disabled” ethos. If a disability is considered to irretrievably diminish the quality and value of your life, why be concerned about other problems could you possibly encounter? The difficulties thrown at other people are not yours.

Anita Cameron, testifying at the 2023 Juneteenth Congressional Briefing on Inequality and Disproportionate Impacts of Covid Response on Black Disabled Communities, said  “when we have disasters what happens? We’re folks with disabilities and we die needlessly…In disasters who’s more likely to die? Folks with disabilities in Black and Brown communities.”

Certainly, Hurricane Katrina was an unmitigated catastrophe for New Oleananes with disabilities, many of whom were also members of other devalued groups. Prior to the storm, many people could not act on evacuation orders because they could not get accessible transportation or could not get needed information because it was not being provided in accessible formats. As the storm bore down, many people with visible disabilities were illegally denied entrance to shelters. In some cases, this was due  to fact that the American Red Cross had decided to reject people with disabilities, on the basis that they did not have enough supplies to care for them along with everyone else. This de facto rationing received virtually no mention in the press.

Nursing home residents were left to drown. At the extreme of the extreme end, one hospital dealt with the hurdles of evacuating patients with limited mobility by giving lethal injections to a minimum of seventeen individuals. Later, Louisiana responded by giving healthcare providers broad immunity for actions taken during crisis situations.

Disaster preparedness and disaster relief as well as making sure that civil rights are not lost in the shuffle are disability issues.

The Partnership for Inclusive Disaster Strategies (The Partnership) is the only U.S. disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies. As stated on its website, “The Partnership prioritizes equity, access, disability rights, disability justice, and full inclusion …[in disasters]…; prevention, planning, response, recovery and mitigation must start with and be led by multiply marginalized disabled people who are the most disproportionately impacted.” The Partnership strives to influence disaster policies and programs, so they work for all.

A resource hub for all matters related to people with disabilities throughout all phases of disasters and emergencies, the Partnership works with communities, organizations, corporations, and governments achieve and maintain equity and full inclusion in all phases of disaster management and recovery.

The Partnership’s Disability & Disaster Hotline provides information, referrals, guidance, technical assistance and resources to people with disabilities, families, allies, and organizations assisting disaster impacted individuals with disabilities and others seeking assistance with immediate and urgent disaster-related needs. In disasters such as the recent Hurricane Helene in the southeast, the hotline helped with the following:

  • Search and rescue coordination

  • Coordination of oxygen supplies and support

  • Coordination of wellness checks

  • Information and referral resources to shelters and other immediate assistance such as food and water

  • Durable medical equipment replacement 

  • Medicine storage information and support

  • Connecting callers to the local Centers for Independent Living and other disability and aging resources

The Partnership is now responding to the urgent needs generated by even more recent Hurricane Milton.

For things you can do to prepare for an emergency (that hopefully you will never experience), click here.

To reach the hotline, call or text 1(800) 626-4959 or email hotline@disasterstrategies.org

Progressives Against Medical Assisted Suicide Film to be available for showings and distribution in early 2025

Thanks to those who have contributed funds, ideas, and/or moral support, the Progressives Against Medical Assisted Suicide (PAMAS) film about the social and humanitarian dangers of legalizing medical assisted suicide is on target for completion by the end of the year. On September 16th, four interviews were filmed, each powerful in its own way. We are looking forward to a second group on November 12th. We are working on background content, and our filmmaker will complete a “first draft edit” late in November which we will review for a final edit. Then, ASL sign language interpretation will be synced in for the completed version.

2025 arrives soon, bringing a new legislative session in many states. New bills to legalize MAS will likely be introduced throughout the country. In Connecticut, for example, proponents are likely to sponsor a bill in the Judiciary Committee, which they have stated publicly they will pack with supporters, rigging the game in advance. So, it’s prime time for public discussions about the general issue. We are seeking venues in which to show the film and host discussions following it. We’re approaching libraries, medical schools, colleges and universities, law schools and any other venues that we can think of.

We are pleased to share the film widely so that people all over the country can arrange showings in their own locations. The issue of medical assisted suicide is a national (and international) problem. Many states in the U.S. will have legislation pending next year and in the future, as will Great Britain. Our film will not be specific to any particular state or piece of legislation, so it should be relevant for all areas and for several years at least. It will be available on our website or via YouTube link for people to watch individually, but the beauty of showing the movie quality version to a group is to allow for subsequent discussion and remarks. The film itself will be about 15-20 minutes long. Please contact us if you are interested.

We are also still raising funds to pay for technical help for preservation and distribution of the film; to buy a film projector to use at venues that may not have one; and to do printing and publicity, so any help that you can give would be most appreciated. Make your checks out to Center for Disability Rights. ***IMPORTANT: Write “NDY/PAMAS” in the check memo line.*** Mail checks to NDY/PAMAS, 497 State Street, Rochester, NY 14608. Donations are tax deductible to the fullest extent of the law. If you prefer to use NDY’s online donation button (https://notdeadyet.org/donate-to-not-dead-yet), you must also email the project at ProgressivesagainstMAS@hotmail.com with your name and the amount to distinguish it from other donations to NDY.

If you want more information, please contact ProgressivesagainstMAS@hotmail.com.

Joan Cavanagh

Member, Progressives Against Medical Assisted Suicide