Disability rights advocates from Second Thoughts MA and Not Dead Yet are cheering Monday’s decision by the Massachusetts Supreme Judicial Court (SJC), which ruled against plaintiff doctors Roger Kligler and Alan Steinbach in their lawsuit to declare assisted suicide a state constitutional right.
“This is a victory for disability rights,” said Second Thoughts director John B. Kelly. “Everyone who is terminally ill is already or will soon be disabled, and deserves the same level of suicide prevention services as everyone else.
“We appreciate the court’s reference to the amicus brief filed by the Disability Rights Education and Defense Fund (DREDF) and thank the state disability organizations who joined the brief (list on page 2).”
Not Dead Yet president Diane Coleman said, “Neither the U.S. Supreme Court nor any state high court has found a constitutional right to assisted suicide. The prohibition against assisted suicide protects the lives of all disabled people, including the terminally ill.”
Not Dead Yet Director of Minority Outreach Anita Cameron said, “Black people overwhelmingly oppose assisted suicide and don’t use it, and we don’t trust white elites with their newfound concern for how we die, when as the late comedian and activist Dick Gregory said, they never cared about how we live.”
Not Dead Yet Assistant Director Jules Good said, “As we have seen in Canada, granting assisted suicide and/or euthanasia as a fundamental right has resulted in the unnecessary deaths of disabled people who lack access to housing and proper healthcare. Through this decision, the Massachusetts Supreme Judicial Court has chosen to protect our most vulnerable neighbors and recognize the value of disabled lives.”
Second Thoughts member Ellen Leigh said, “I supported assisted suicide until I learned that it is all about disability – the top five reasons in Oregon involve depending on others, feeling like a burden, and shame – ‘loss of dignity.’ We all have inherent dignity and do not lose that when we become ill and disabled. Bringing ‘dignity’ into this only increases feelings of shame and burden for choosing to live.”
“We thank the court for its insistence that ‘physician-assisted suicide’ is the only correct and accurate phrase. Proponents and media alike should stop confusing people with pleasing euphemisms,” said Second Thoughts member Mary Makuc.
“Now let’s talk about fully funded home care so old, ill, and disabled people can live at home in the community, not feel like a burden on unpaid family members,” said Second Thoughts member Brian Shea.
Members of the two groups held an action on October 13 in front of the SJC to remind people that this matter belongs in the legislature, receiving coverage from Boston’s Neighborhood Network News, along with an interview with Not Dead Yet Assistant Director Jules Good.
Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide organized in 2012 and helped defeat the 2012 Ballot Question 2 for the legalization of assisted suicide. The group has successfully lobbied against every assisted suicide bill since.
Not Dead Yet is the leading national disability organization opposing assisted suicide laws, futility judgments, and “better dead than disabled” policies. The group organized in 1996 to help stop Kevorkian, whose victims were overwhelmingly disabled and not terminal.
Disability Rights Organizations who Joined DREDF Amicus Brief:
National Organizations
•Disability Rights Education and Defense Fund
• The Arc of the United States
• American Association of People with Disabilities
• Assn of Programs for Rural Independent Living
• Autistic Self Advocacy Network
• Autistic Women and Nonbinary Network
• Disability Rights Legal Center
• National Council on Independent Living
• Not Dead Yet
• National Organization of Nurses with Disabilities • TASH
• United Spinal Association
• World Institute on Disability
Massachusetts State Organizations
• The Arc of Massachusetts
• Disability Policy Consortium
• Independence Associates
• MetroWest Center for Independent living
• Second Thoughts Massachusetts
• Stavros Center for Independent Living, Inc.
Following the precedent in the U. S. Supreme Court and several state high courts, the Massachusetts Supreme Judicial Court ruled in the Kligler case, rejecting the plaintiffs’ claim that assisted suicide is a constitutional right.
“Although we recognize the paramount importance and profound significance of all end-of-life decisions, after careful consideration, we conclude that the Massachusetts Declaration of Rights does not reach so far as to protect physician-assisted suicide.3 We conclude as well that the law of manslaughter may prohibit physician-assisted suicide, and does so, without offending constitutional protections.”
Not Dead Yet was one of nineteen disability organizations that joined in an amicus brief filed by the Disability Rights Education & Defense Fund.
We’ll cover this great news more in the coming weeks.
Boston Globe photo caption and credit: Disability-rights advocate John Kelly, director of Second Thoughts Massachusetts, at his Fenway apartment. The group opposes what it calls “assisted suicide.” Barry Chin/Globe Staff
Voices from the ‘right to die’ debate
By Robert Weisman Globe Staff,Updated December 11, 2022, 5:20 p.m.
In anticipation of the upcoming reintroduction of an assisted suicide bill in Massachusetts, Boston Globe reporter Robert Weissman had a pro assisted suicide [“medical aid in dying”] article and sidebar appearing on page 1 in the online version on the evening of December 11th. The main article is entirely proponent arguments, while the sidebar piece includes both proponent and opponent arguments.
Not Dead Yet’s John Kelly was included in the voices featured in the sidebar article. Here is the excerpt reflecting some of John’s perspective:
Disability-rights advocate John Kelly, who lives in Boston’s Fenway neighborhood, is director of Second Thoughts Massachusetts, a group opposing what it calls “assisted suicide.” He’s also a quadriplegic who injured his spinal cord in a sledding accident 38 years ago.
Kelly, 64, has testified against medical aid-in-dying legislation and organized a rally against the appeal to legalize it through the Supreme Judicial Court. He condemns a “better dead than disabled” mindset he sees in those distressed about loss of control at the end of their lives.
“Proponents say it’s about pain and suffering,” Kelly said. “But it’s relatively privileged people’s response to their own disability and dependence on others.”
Folks with disabilities often grapple with a lack of access to health care and home care services, he said. “Everyone should receive effective palliative care,” he said. “But we also believe people should be able to stay in their home and have adequate care there. This is really a values discussion masquerading as a medical issue.”
Kelly is also highly skeptical of treating a physician’s six-month prognosis as an exact science.
“People have to remember that doctors are often wrong about predicting when someone will die,” he said.
Good news! On Wednesday December 7th, Judge Chabbria of the United States District Court for the Northern District of California dismissed the Shavelson case, with prejudice.
Michelle Uzeta, the DREDF attorney who prepared our excellent Disability Amicus Brief, says this means the case is over at the district court level. NDY previously reported on the Brief HERE. Regarding this week’s ruling on the dismissal of the case, Michelle also wrote this to the Disability Amici (friends of the court):
If the plaintiffs want to continue to try and legally eliminate the self-administration requirement of the End of Life Options Act (ELOA), they will have to try their luck on appeal.
The judge found that the plaintiff’s lacked standing to pursue their claims, but added that even had they established standing, the claims would nonetheless fail on the merits. Judge Chabbria found (as he has earlier in the case) that elimination of the self-administration requirement would constitute a “fundamental alteration” of the ELOA, crossing the line from aid-in-dying to euthanasia.
The court also granted our motion to file our amicus brief, ensuring that the brief is part of the official record on appeal.
Thank you for all your support as amici in the case. I believe it made a difference.
NDY adds our thanks to the organizations that joined DREDF’s important brief:
American Association of People with Disabilities, Association of Programs for Rural Independent Living, Autistic Self Advocacy Network, Autistic Women and Nonbinary Network, Disability Rights Legal Center, National Council on Independent Living, National Organization of Nurses with Disabilities, Patients’ Rights Action Fund, United Spinal Association and World Institute on Disability.
In this video, we discuss the meaning of the term “ableism”, how it manifests in our society and medical institutions, and what that means for disabled people. Come learn with us!
Hello and welcome back to the Not Dead Yet vlog! My name is Jules Good, I use they/them pronouns, and I’m the Assistant Director and Policy Analyst at Not Dead Yet. I’m a white person with short brown hair, and today I’m wearing round coral-colored glasses and a black velour shirt. I’m holding my microphone today because my mic stand is somewhere unknowable to me.
Today, we’re talking about ableism. This is a big topic that we won’t tackle all of in one video, but we’re going to start with an overview so that we can dive deeper into topics that hinge on this concept, like euthanasia and crisis standards of care, in future videos. You can think of ableism as a common denominator in many of the issues disabled people face in medical settings– when we understand ableism, we begin to understand the motivation behind everything from triaging during emergencies to assisted suicide policies and more.
So what is ableism? My favorite definition comes from TL Lewis, a Black disabled scholar, author, and activist. TL updates this definition every year to reflect changes in the disability justice movement and the treatment of marginalized peoples. If this definition seems a little long and complicated, don’t worry– we’ll break it down together! Ableism is: “A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness”, and/or their ability to satisfactorily re/produce, “excel” and “behave”. You do not have to be disabled to experience ableism.”
We could make a whole other video on the brilliant nuance of TL’s work here– but for this context, I’ll focus on a few main points. The first thing I want to talk about is the phrase “societally constructed ideas of normalcy.” We all have ideas about what is “normal,” but those ideas are based on our own lived experiences, background, and upbringing. So who gets to decide what is “normal” on a societal scale? That would be the people who have the most social status and power: white, cisgender, straight, nondisabled, wealthy, middle-aged men. We can think about these descriptors as a sort of baseline– or, to use a sports analogy, a football endzone. People who fit all of these characteristics are close to the endzone with minimal barriers in their way. That doesn’t mean nothing in their lives is difficult, but it does mean that their base identities are not the things making their lives harder. As you stray from these characteristics– by being disabled, for example– you are further from the endzone and it is harder to score. As TL points out, eugenics, anti-Blackness and other forms of racism, misogyny, colonialism, imperialism, and capitalism are the societal forces that move people further down the field. And the further you are, the more likely you are to experience ableism– to be treated as if your life has less value, purpose, or inherent worth than people closer to the endzone.
Ableism manifests in our lives in many, many ways, some overt and some more subtle. One way ableism persists in medical settings is through skewed quality of life judgements, which lay the foundation for decisionmaking around withdrawal of life-sustaining treatment, assisted suicide policies, futility judgements, and more.
Quality of life is one of those tricky terms that can have vastly different meanings depending on who is saying it, but we can start with the World Health Organization’s definition. They define it as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” In other words: how content someone is with their life. Seems unbiased enough on its face, right? But the hazardous term in WHO’s definition is: “in the context of the culture and value systems in which they live.” The context of Western culture, particularly in the United States, is a history and value system full of ableism.
We can turn to a few different places for evidence of this. The first, and perhaps easiest to grasp for the average person, is television; and for superb expertise on that, we can spotlight our friends at FilmDis! FilmDis is a media monitoring organization advocating for authentic representation and inclusion of disabled people in front of and behind the lens, led by Dominick Evans and Ashtyn Law. In their most recent study of disabled representation, they watched 250 different TV shows and collected data on not only the prevalence of disabled representation in the shows, but also on the quality, intersectionality, and authenticity of that representation. Across genres, studios, and production budgets, there is a common thread in bad disability representation: We are portrayed as if our lives and personalities fully revolve around our disabilities… and, that our lives kind of suck. Disabled characters are shown as incapable of doing anything without nondisabled help (CODA), as having a singular dream to be nondisabled (Glee), or as one-dimensional props meant to inspire or motivate nondisabled characters (Breathe). As the FilmDis team puts it in their most recent report: “There are a lot of parts of our day when our disability is not even our focus or highlight. You would not know that from television.”
So how does this translate to the real world? Well, imagine that you are a newly disabled person with no prior lived experience of disability and no familiarity with disability justice. In thinking about what your life will be like with your new disability, the stories you are most likely to have seen are similar to those we’ve just described. This is most likely the case for your doctors, family members, and other caregivers, too. While feeling grief or sadness after a new diagnosis is expected, the hope is that you leave that care setting with at least a little bit of hope that you can live a fulfilling life with your disability– but because disabled people are so often portrayed as living tragedies and pity cases, this is unlikely.
And this is where the concept of “quality of life” and the WHO definition comes back into play. While the WHO says that the individual’s self-assessment is what counts, the reality is that all too often the “quality of life” judgements of others dominate the discussion. When doctors and caregivers are convinced by popular media and societal norms that your life will be difficult and depressing with a disability, they are biased toward thinking your quality of life will automatically be lower than someone without a disability. And there’s research to back this up– a Harvard study surveyed 714 practicing physicians from multiple specialties and locations across the country about their attitudes toward patients with disabilities. More than 80% of physicians surveyed reported that people with “significant” disabilities have “a worse quality of life.”
The effects of this attitude toward disabled patients can be devastating. Care rationing during the ongoing COVID-19 pandemic is a harrowing example. At points in 2020 and 2021 when the patient need for ICU beds and ventilators exceeded the supply at most hospitals, many states employed crisis standards of care. While these standards vary slightly from state to state, the main commonality between these policies is that they prioritize giving treatment to patients who medical professionals feel will respond well to treatment. But in overcrowded emergency rooms with hours-long wait times in understaffed hospitals, that judgment is not always made with care. Around the world, disabled people were denied COVID treatment on the basis of clinical algorithms, which in this case are basic questionnaires that assign point values to people based on how likely they are to benefit from treatment. Certain disabilities impact the score by default, regardless of the condition a person is in when they arrive at the hospital. In addition, disabled people were targeted and pressured into signing Do Not Resuscitate orders (also called DNRs), meaning that they legally consented to not being revived in the event that they stopped breathing or their heart stopped beating. This means that medical professionals identified someone as disabled, decided merely by looking at them that they would not respond well to treatment, and pressured the disabled person into literally signing their life away in a fashion that protects the hospital from liability. This is a very real and ongoing example of biased quality of life judgements endangering disabled lives.
A specific case related to this topic that you may have heard about is the tragic death of Michael Hickson, a 46-year-old Morehouse grad, husband, and father of 5. Michael became quadriplegic in 2015 after a heart attack left him with a brain injury. In 2020, he got COVID and was transferred to a hospital. Michael was a legal ward of a care agency, rather than his family, because of complications in getting him the care he needed after his heart attack. The hospital told Mrs. Hickson that they were going to stop treating Michael and move him into hospice care; the care agency that served as his medical guardian signed off on this decision. A week later, Michael died at the hospital. Perhaps the most troubling evidence from this case comes in the form of a conversation that Mrs. Hickson recorded with one of Michael’s doctors. The full, captioned recording is available on YouTube– we’ll put a link to it in the description for this video. Here’s an excerpt of that conversation:
Doctor: “So, as of right now his quality of life — he doesn’t have much of one.”
Mrs. Hickson: “What do you mean? Because he’s paralyzed with a brain injury, he doesn’t have quality of life?”
Doctor: “Correct”.
To go back to our ableism football field metaphor from earlier in this video, Michael Hickson was pretty far from the endzone as a Black disabled person. We know that Black patients face a multitude of extra problems in hospital settings due to racism– check out our first vlog for a deeper discussion on this. Michael Hickson died prematurely because of biased notions about quality of life for disabled people. Michael Hickson, like so many others, was denied treatment and died because our society devalues the lives of disabled people. Everywhere we look, from hospital rooms to movie screens, disabled people get the message that our lives matter less than those of nondisabled or “healthy” people. We must reject this notion. Disabled lives are beautiful and can be full of as much joy and complexity as nondisabled lives. Let’s work together to build a world where more people know that’s true.
Thanks for watching! To learn more about our work, visit www.notdeadyet.org . Bye!
Boston Globe photo caption and credit: Disability-rights advocate John Kelly, director of Second Thoughts Massachusetts, at his Fenway apartment. The group opposes what it calls “assisted suicide.”