Webinar: Disability Perspectives on Assisted Suicide
Join Patients Rights Action Fund‘s next webinar! This webinar will feature prominent disability advocates discussing the implications of assisted suicide legislation on medical discrimination against people with disabilities.
In a stellar lineup, speakers Lydia Brown, John Kelly, Vincenzo Piscopo, and our own Ian McIntosh will collaboratively explore the impact that assisted suicide laws have on the disability community.
When: September 9th, 2022, 4 pm – 5:30 pm Eastern
Proponents work to expand assisted suicide laws every year, and 20% of the United State’s population has access to deadly drugs. Every year the issue of assisted suicide becomes more relevant to the general population; PRAF invites all people who want to improve healthcare to listen in on why assisted suicide has, does, and will continue to hurt people with disabilities.
As a staunch ally, consider inviting one friend to this webinar, especially if there are active bills in your state every session!
This webinar will include real-time closed captioning and will
be signed by an interpreter. If you have an accommodation request, please email ian@patientsrightsaction.org.
[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.
![[Image description: White letters on a landscape oriented teal poster with four head-shots along the bottom of the poster. Text: Fighting Assisted Suicide Coast to Coast Webinar Series, Assisted Suicide Laws and Equality in Dignity. The first head shot: Lydia Brown, a person of color with short black, teal dyed hair wearing glasses and smiling. They wear a blue blazer, light-blue shirt, and blue tie. Second headshot: John Kelly, a caucasian male with glasses, side-smiling at the camera, with a wheel-chair head rest visible behind his head. Third headshot: Vincenzo a person of color who smiles, wearing a black suit coat, white shirt, and orange tie. Fourth headshot: Ian McIntosh, a caucasian male wearing glasses and slightly smiling. He wears a black suit jacket and white collared shirt.]](https://i0.wp.com/notdeadyet.org/wp-content/uploads/2022/07/Invite-Assisted-Suicide-Laws-and-Dignity-5.jpg?resize=604%2C339)
