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
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
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.
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.
Member, Progressives Against Medical Assisted Suicide
Carol Gill – On the Day of Her Memorial Gathering
Carol Gill
On August 31st, Carol Gill, my long time mentor and friend, passed away. Some, perhaps many readers of this blog may not be familiar with Carol’s work or role in the years leading up to my founding of Not Dead Yet. Below are the thoughts I sent to be shared on this day of her Memorial gathering in Illinois:
The closest times I had with Carol were in the late 1980s so I went looking around and found that the Online Archive of California contains a transcript* of an extensive interview with Carol, a treasure trove really. In it, she actually talked about the protest that is part of Not Dead Yet’s origin story, where we met in 1985. Carol explained:
As one part of the disability community’s response to the Elizabeth Bouvia case [an early “right-to-die” case], a bunch of us actually formed a picket line and picketed in front of the building of the southern California ACLU because we were so pissed off with them about not seeing this as a political issue and only interpreting it through medical-model understandings. We did our best first to educate them, to appeal to rationality, emotionality, whatever; we tried to dissuade them from their position, and they continued to help her die legally, so we picketed them and sang, “We Shall Overcome.” Some of them came to the windows and cried because they couldn’t believe, these good progressive liberals, that any group would be protesting them and singing, “We Shall Overcome” against them; some of them were quite shaken up.
In time, we became friends and companions. Carol, Larry, disability movement photographer Tom Olin and I used to hang out together many weekend evenings in Van Nuys, CA. More than anyone else, Carol taught me everything I knew about disability culture, disability pride and, of course, assisted suicide. She was a highly respected expert on the issue and, in April ’96, she was invited to testify about it in a House subcommittee, but she didn’t want to travel and ask me to co-author the testimony and do the trip. The weekend before testifying, I started Not Dead Yet.
The long and short of things, like for so many others, is that Carol’s intelligence, wisdom and insight set the course of more than three decades of my life. Carol continued, with colleagues like Paul Longmore and others, to carry the weight of challenging the growing push in professional journals to embrace assisted suicide based on illness and disability. Her articulation of the disability discrimination that fuels a public policy of assisted suicide has made its way into the federal courts in an ADA challenge to the California assisted suicide law brought last year by the United Spinal Association, Not Dead Yet and others, and continues to guide our struggle.
