[Author’s note: Readers may wonder why it’s taken a month for me to post my response to the federal district court ruling in the Shavelson case. I was hoping to be able to post it after it appeared as an op-ed in one of the California newspaper outlets I pitch it to, but, alas, NDY’s message was not picked up. So I am finally posting it on the one month anniversary of the decision. It’s also an ADA case, so it’s another positive note for next Tuesday’s ADA Anniversary. – Diane Coleman]
Diane Coleman
Not Dead Yet Applauds Court Ruling In CA Euthanasia Case
Not Dead Yet, a national disability rights group, applauds the federal District Court of Northern California for its June 22nd ruling against expanding California’s doctor assisted suicide law to allow euthanasia. This auspicious day also marked the 23rdanniversary of the U.S. Supreme Court decision in Olmstead, which established our right to be free from institutions. Unfortunately, the fights against euthanasia and institutionalization are not over.
As a person who depends on full time breathing support, I’ve been deeply concerned about the Shavelson v. Bonta case. Euthanasia involves lethal drugs administered by medical providers, rather than being self-administered, and poses a direct threat to people with disabilities. It would deny disabled people the equal protection of laws against homicide.
I started Not Dead Yet 26 years ago during Dr. Jack Kevorkian’s days of assisting the suicides of disabled people who were clearly not terminally ill. Some people viewed assisted suicide as a sort of “reasonable accommodation” to enable people who have serious physical impairments to have the same access to suicide as physically able people.
That twisted “reasonable accommodation” theory doesn’t really hold up on closer examination. For one thing, none of the assisted suicide laws require that the individual cannot commit suicide without assistance, and proponents offer “how to” guides. Furthermore, healthy and able-bodied suicidal people are very likely to survive a suicide attempt rather than die, but assisted suicide bills have never included eligibility for them. So that reasonable accommodation theory doesn’t hold up.
Four doctors and two persons with disabilities brought the Shavelson case to open the door to active euthanasia. In theory, this would provide euthanasia to persons who might lose the ability to swallow pills or to deliver assisted suicide drugs through a feeding tube or IV, perhaps by pressing a button. They’re calling euthanasia a reasonable accommodation under the Americans with Disabilities Act (ADA).
Not Dead Yet has always taken the position that assisted suicide laws themselves violate the ADA by setting up a double standard for how society responds to a person who says they want to commit suicide – some people get suicide prevention and others get suicide assistance, and the difference is the person’s health and disability status. And the data shows that virtually all people who request assisted suicide are distressed about disabilities, even if some don’t think of their impairments that way.
We’re especially concerned about assisted suicide becoming an accepted medical treatment. Anyone who has struggled to get necessary healthcare knows that your right to receive care depends on your pocketbook, your insurance, race, age, disability, etc.
Sadly, people with severe disabilities, especially those who are multiply marginalized, are among the least valued in the healthcare system, both because our higher needs make us less profitable in a managed care environment and because of crushing societal biases that have been absorbed by doctors and staff. As a Harvard researcher found, “In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people.”
But what really threatens our quality of life is how hard it is to get the supports we need to live. Right now, the direct care workers who help us get out of bed and ready for our day are fleeing to jobs that pay higher wages than public or private insurance is willing to pay for our care. One friend with quadriplegia who’s lived in her own apartment for over ten years recently said she’s thinking of assisted suicide because she’d rather die than be forced back into a nursing home.
Instead of addressing these horrible realities so our basic needs are met, there are growing efforts to expand assisted suicide laws and dismantle their minimal patient protections.
The Shavelson plaintiffs’ proposal to allow a medical provider to perform the final act of administering lethal drugs would pose a dramatically greater threat. It would rob patients of the power to change their minds at that last crucial moment and cross the final line that separates assisted suicide from full on homicide.
We are grateful that the federal district court refused the Shavelson request to allow euthanasia and dismissed the case. But the very real pressures on disabled people to get out of the way, the ableism that permeates society, and most likely this court case, are not over.
Anita Cameron’s interview on the PushBlack podcast was broadcast on June 20th:
Jay (host): Harriet Tubman, Bradley Lomax, Joyce Ardell Jackson, Denmark Vesey, these are only a handful of Black activists you may know, who rebelled, demanded justice, fought for freedom, and played unquestionably significant roles in the continued journey towards liberation. What you might not know, however, is that these and many more activists were disabled. I’m Jay from PushBlack, and you’re listening to Black History Year.
So, today, disabled Black folks represent nearly half of us who are killed or brutalized by police, and their stories and their struggles are often overlooked when we talk about liberation. So, whether it’s a lack of awareness or perhaps bias, our guest today will shed light on this group that’s often made invisible, even within the Black community. As a disability rights activist and advocate, Anita Cameron has dedicated almost 40 years to community organizing and making sure that folks with disabilities have equitable rights in society. For protesting and civil disobedience, Anita has been arrested over 100 times fighting this fight. She’s also the Director of Minority Outreach at Not Dead Yet, a national disability rights organization that fights against physician-assisted suicide and the euthanasia of people with disabilities. Whether these disabilities be related to physical or mental health, many of these challenges go ignored, and it needs to be addressed. So, today, we’ll chat with Anita.
A June 30th Washington, D.C. news story, Medical aid in dying: States debate right-to-die laws, included a photo from a Not Dead Yet protest held at a press conference held by assisted suicide proponents which was covered in this blog in early May (Disability Activists Crash Pro-Assisted Suicide Press Conference). Though giving more space and first prominence to proponents, the June 30th article includes opponents in video interviews, photos and substantial quotes. Below are the quotes and protest photo, but for the full article go HERE.
‘More harm than good’: The case against physician-assisted suicide
Aaron Baier with NDY T-shirt and Protest Sign
Aaron Baier, director of administration for the Independent Living Center of the Hudson Valley (photo credit: Julie Farrar)
If someone is diagnosed with cancer, but declines chemotherapy, should a doctor help them die? Should people suffering from mental illness like anorexia nervosa be able to end their lives with a prescription?
It’s questions like these that fuel opposition to physician-assisted dying, or what some opponents call “assisted suicide.”
“They grant broad immunities to doctors and others involved,” said Diane Coleman, a disability advocate who founded the organization Not Dead Yet in 1996 to oppose physician-assisted suicide. “The only real data is reported by the prescribing doctor; there’s no meaningful oversight.”
The American Medical Association has debated the issue in recent years and hasn’t changed its stance: that ultimately, physician-assisted death does more harm than good.
“That six months or less is a prognosis,” said Matt Vallière, executive director of the Patients Rights Action Fund, a nonpartisan, secular organization opposed to physician-assisted suicide. “It’s a best guess by physicians, and those physicians will readily admit that it’s not a hard and fast thing. They’re not very good at prognostication.”
Vallière began lobbying against aid-in-dying laws in 2012, when his home state of Massachusetts put the issue on the ballot for voters to decide. Polls leading up to the vote showed 70% approval, Vallière said, but on election day the measure failed in a 51%-49% vote.
“This makes suicide a medical treatment,” he said. “It’s coded by your doctor, your insurance company. Your doctor, your pharmacist and your insurance are now involved. In some cases your insurer will pay for this, while denying you coverage for other things.”
The lack of oversight could lead to tired and overworked caregivers giving patients the medication against their will, Vallière said. He said it also allows doctors to skirt requirements without consequence.
“You have to be competent at the time of request, not the time of ingestion. Not a single one of them has a requirement that a third party be present at the time of ingestion to ensure competence and that it’s voluntary,” Vallière said.
Coleman, of Not Dead Yet, has a form of muscular dystrophy and has been in a motorized wheelchair since she was 11 years old. She’s had breathing support for the past 20 years and still works fulltime.
“People’s reasons for assisted suicide are disability issues — a loss of autonomy, the stress of not being able to do the same things, feeling like a burden of others. Those are the kinds of concerns that we understand very well,” Coleman said.
Coleman started her organization in 1996, the same year Dr. Jack Kevorkian was acquitted on criminal charges that he helped two women kill themselves in Michigan. It’s also the same year physician-assisted death was going before the U.S. Supreme Court.
Coleman and other disability advocates warn aid-in-dying laws can lead to unintended, life-or-death consequences that “set up a change, a set of expectations in society and in a health care system that already sees people like me as a bit too expensive.”
“We face a lot of difficulty in getting the services we need just to get up in the morning … Whatever we need, it’s a struggle still,” she said. “The answer is to provide the supports we need, not to kill us.”
In Shavelson, a terminally ill plaintiff with ALS contends that the ELOA’s self-administration requirement violates anti-discrimination laws on the basis of disability. While the plaintiff is eligible for physician assisted suicide and has the ability to self-administer lethal medication at present, they’d prefer to utilize the option later in the dying process, when self-administration is no longer possible.Accordingly, the plaintiff, joined by her doctor and three other physicians, seeks to eliminate the requirement entirely, and has framed her request as a “reasonable accommodation” under disability law.
On June 22, 2022, Judge Chhabria granted the State’s motion that the plaintiffs’ complaint be dismissed, finding thatthe plaintiffs had failed to state a viable claim of discrimination. Judge Chhabria held that elimination of the self-administration requirement would “fundamentally alter” the nature of the ELOA in two distinct ways. First, by traversing the “sharp boundary” between allowing an individual to end their own life and euthanasia. This, Judge Chhabria opined, would transform the benefit available under the Act and compromise its “essential nature.” Second, by opening a window during which there would be no way of knowing whether the patient had changed their mind about ending their life, significantly undermining the protections purposefully included in the ELOA to prevent abuse and coercion.
DREDF previously voiced its opposition to the Shavelson plaintiffs’ efforts to eliminate the ELOA’s self-administration requirement, and agrees with Judge Chhabria’s dismissal of their complaint. It is DREDF’s longstanding position that assisted suicide statutes are part of the United States’ tragic history of state-sanctioned discrimination and bias against people with disabilities and chronic illnesses in health care settings, violate anti-discrimination laws by treating disabled people differently, and convey the message that disabled lives are less worthy.Under assisted suicide laws, the presence or absence of disability alone determines whether an individual is carved out from the protections of state laws prohibiting abuse and neglect, and whether expressions of suicidal intent are responded to with intervention and preventative measures or aid in implementing lethal measures.Where states have nonetheless authorized this practice, it is critical that existing statutory safeguards be preserved. This is particularly true in California, where key protections in the ELOA have already been significantly rolled back. In October 2021, California enacted Senate Bill 380, eliminating key protections the Legislature championed only a few years before, including (1) reducing mandatory 15-day waiting periods between requests for assisted suicide drugs to 48 hours; and (2) eliminating the requirement that an individual affirm their decision before lethal drugs are administered.
Although the immediate threat posed to disabled people by the Shavelson case has been avoided,the fight against the expansion of assisted suicide and euthanasia continues. Judge Chhabria has provided the plaintiffs an opportunity to amend their complaint to argue a more narrowed and “unusual” theory of discrimination first raised in response to the State’s motion to dismiss; namely, whether a physician should be allowed to intervene and assist if a patient begins the process of administering lethal medication on their own but cannot complete the act. Judge Chhabria noted that he was skeptical such an amendment would be worthwhile, as “the assumptions required to support standing to pursue such a claim seem fanciful”, nonetheless, the plaintiffs may choose to refile. Alternatively, the plaintiffs may appeal the dismissal of their complaint directly to the Ninth Circuit.
DREDF continues to monitor the Shavelson case and will seek participation as amici in future proceedings as appropriate.
Head and shoulders photo of Anita Cameron, an African American woman with long locs and brown sweater.
As the Juneteenth celebrations approach, it’s important to know and understand racial disparities in healthcare, the impact it has on the Black community and why Black people, particularly disabled people, must fight against doctor assisted suicide.
There is a long and shocking history of medical abuse and experiments on the Black community,[1]fueled by racism and stereotypes, that has led to, and continues to spur, disparities in healthcare.
From the earliest days of this nation, Blacks have received abysmal treatment at the hands of doctors. Black enslaved people were property and seen as little more than animals. Enslaved people came to know that when they were purchased by doctors, their lives would be especially hard because they would be experimented on without anesthesia. In everyday life, enslaved people who became ill got the most cursory of medical treatment; most slaveowners called in the veterinarian for them, while whites got to see a regular doctor.
An illustration of the worthlessness of the Black body and how expendable we were can be found in the practice of J. Marion Sims, called the “father of modern gynecology”. He used enslaved Black women to test his techniques and to perform surgeries on without anesthesia. When white staff could no longer bear the screams of agony of Dr. Sims’s patients as he did surgery on them, other Black enslaved women were forced to restrain the patients during these barbaric acts.
After slavery, the treatment of Black patients did not improve much. Hospitals and medical schools saw us as medical or research material rather than patients and based their diagnoses, prognosis and treatment on vicious racial stereotypes about us and our community. Many types of junk science such as phrenology, which made racial assumptions based on the size of, and bumps on the skull, were in vogue, and it greatly influenced the thoughts and attitudes of the white medical establishment towards us.
Black doctors in the late 19th and early 20th centuries often could not practice medicine in the United States, and those who were allowed to could not have white patients. They spoke out against the cruel and disrespectful treatment of Blacks in hospitals and research centers but were largely ignored. Unlike whites, who could sue for mistreatment, Blacks had no legal recourse. Our community came to fear hospitals and deeply mistrust doctors, particularly white or non-Blacks because we knew that at their hands, we would die or at the very least, suffer abuse.
Today’s racial disparities in healthcare are a direct result of this history. Blacks are more likely to die from a heart attack or cardiac disease, yet we receive inferior care compared to whites.
The stereotype that Blacks are closer to animals, and therefore feel less pain than whites, has led to Black patients receiving abysmal treatment for pain. Our pain isn’t taken seriously. We are accused of being hysterical, emotional, malingering or outright drug seeking. In a recent study of 1 million children with appendicitis in emergency rooms around the nation, Black children were one-fifth as likely to receive opioid painkillers for their severe pain as white children.[2] In a 2016 study, 1/3 of 222 white medical students and residents surveyed held the false belief that Blacks had thicker skins, like animals, and a higher tolerance for pain.[3] They were less likely to perceive the intensity of Black patients’ pain and recommend appropriate treatment.
We die from diabetes at twice the rate of whites. We are the sickest patients waiting for organ transplants, yet often die waiting despite the role that level of need supposedly plays in transplant priorities. Blacks are diagnosed with cancer at much later stages and our prognosis is worse. Due to the stereotype of Black patients’ noncompliance with doctors’ instructions and orders, we are not afforded the state-of-the-art medical care that white patients routinely get, especially when they have the money.
Much of what was learned about medicine in America was learned on the backs of Black slaves and poor Blacks. One example that comes to mind is the infamous Tuskegee Experiment, where poor Blacks, mostly men, were not treated for syphilis, but allowed the disease to take its course so that doctors could learn what the end results were. HeLa cells, the first line of immortal human cells, were taken from the body of Henrietta Lacks, a Black woman who died of cervical cancer in 1951, without the knowledge or consent of her or her family. Those cells are still being used in medical research today.
Now, there is COVID-19, also known as coronavirus. What started as an outbreak has turned into a worldwide pandemic, with over one million Americans dead.
The Black community, especially, is being ravaged by COVID-19. We are three times more likely to die from it, and four times more likely to be hospitalized for it. COVID 19 has laid bare racial disparities and disability discrimination in healthcare that leads to medical rationing and futility decisions that can end a patient’s life.
Michael Hickson’s case is a clear case of discrimination against disabled people.
Michael Hickson was a 46-year-old Black man from Texas, the father of 5 children. Mr. Hickson was a quadriplegic, the result of a brain injury caused by a heart attack.
He was placed in a nursing home, where he contracted COVID-19. He was sent to St. David Hospital, in Austin, Texas. However, due to his disability, the doctors decided not to treat him, stating that he had no quality of life, though family videos show him laughing and singing with his wife and children.
He was placed in hospice and allowed to die.
So, what does this have to do with doctor assisted suicide? Everything! If you are not getting effective pain treatment for a terminal illness and you live in a state where assisted suicide is legal, you’ll be more likely to seek that recourse. If you are poor and live in such a state, your doctor or others can convince you to “choose” assisted suicide so that you won’t be a financial burden on your family.
We Blacks are overwhelmingly against assisted suicide. In the face of rampant healthcare disparities, it’s no surprise that doctor assisted suicide is rarely used by the Black community. But there’s an organization called Compassion and Choices that’s going into Black communities trying to convince us that doctor assisted suicide is a good thing and that it’s a “right.” They bamboozle us by couching it in those terms, because we know what it feels like not to have basic human and civil rights.
Compassion and Choices is an organization formed and led by middle and upper middle class whites. This demographic of white people overwhelmingly support assisted suicide but they have now hired middle-class Black staff to come into our communities to spread the lie because they know that we’re more likely to listen if something comes from someone who looks like us. As a result, some middle-class Blacks are falling for this farce.
As doctor assisted suicide becomes normalized, racial disparities in healthcare will mean that Black patients will be more likely to be written off as terminal and steered towards ending our lives. As the late comedian and activist, Dick Gregory said, “If we’ve lived all of our lives with you not paying attention to us living well, why do you want to talk about us dying well?”
Black people, wake up and remember our history! Realize and understand what white supremacy is and how it works! Listen to our elders. Listen to Black disabled folks whose lives are devalued every day. Listen to poor Black folks on the street who can tell of the injustices they suffer in emergency rooms across the nation because they’re poor and homeless. Compassion and Choices does not have the best interests of the Black community in mind. They do not care about us; they are merely promoting an agenda. They know full well about the racial disparities in healthcare, but are hoping that either we don’t know or that we have forgotten. They want us to believe that since we Blacks are less likely to receive adequate end of life care that assisted suicide is the answer. It is not! It is not our culture. It puts us, particularly if we have disabilities, are sick or are elders, at grave risk. It is discrimination of the highest order and we must fight back and fight hard against this malevolent form of white supremacy.
[3] Kelly M. Hoffman, Sophie Trawalter, et al., Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
