On June 16, 2022, a forty-four-year-old Italian citizen named Federico Carboni became the first patient in the history of his country to die by medically assisted suicide. Twelve years ago, Carboni was working as a trucker when he found himself seriously injured in a traffic accident that put him into a coma. When he awakened from the coma, he was a quadriplegic.
Kathleen Nicole O’Neal
What I find most haunting about Carboni’s death are some of his last words, statements that he made explaining his decision to seek medically assisted suicide. Said Carboni, “I do not deny that I am sorry to take leave of life. I would be false and a liar if I said the opposite because life is fantastic, and we only have one. But unfortunately, it went like this. I have done everything possible to be able to live as well as possible and try to recover the maximum from my disability, but by now I am both mentally and physically exhausted. I do not have a minimum of autonomy in daily life, I am at the mercy of events, I depend on others for everything, I am like a boat adrift in the ocean. I am aware of my physical condition and future prospects so I am totally calm and calm about what I will do.”
What I find haunting about this is that ultimately this is an indictment of a terrible personal care services (aka caregiving) system, a system that fails to pay workers enough to create a reliable workforce and a system that fails to grant disabled people sufficient authority to control their services. Even the most physically disabled people should feel independent and empowered by their attendant services and apparently this is not what was happening in Carboni’s life.
To take one well known example, Stephen Hawking was a severely physically disabled person who nonetheless exercised great autonomy in his life. Even after his diagnosis of amyotrophic lateral sclerosis, Hawking would go on to get married, publish books, and lecture internationally. He was not “at the mercy of events”; he was a figure who actively shaped scientific history. And while Hawking’s genius is remarkable, the resources which he had at his disposal in order to live his life on his own terms should be available to all disabled people everywhere in the world.
When a disabled person says that they “do not have a minimum of autonomy in daily life,” then that is an indictment of a society and a system that disrespects their equality and civil rights. And the solution to this is not to push assisted suicide as the way to deal with medically complicated individuals – it is to seek to ensure the autonomy of the disabled person in the personal care services relationship. Simply put, assisted suicide is not a solution but an extension of the devaluation disabled people experience. It’s like saying, “Disability equals no autonomy so prepare to die.”
Those who support assisted suicide have attempted to frame the issue as one of personal choice. Hence, the once appropriately named Hemlock Society now euphemistically and misleadingly refers to itself as Compassion and Choices. But what happens to disabled people all too often involves a lack of both compassion and choices and assisted suicide is not the answer to this reality.
In reality, needing care need not be a horrible thing. Says UK disability advocate Lucy Webster, “The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.”
All disabled people should have excellent personal care attendants of their choice on demand. These are the real choices which we need in our society, but these are not the choices that are being framed for us in reference to medical assistance in death. Instead we are presented with phony “choices” – live with absolutely appalling, or even non-existent, services or die.
Federico Carboni did not deserve the death penalty. He deserved what Lucy Webster has. He deserved attendant services that centered his autonomy, his needs, his wants, his wishes, and his will. His life would have been different had he had that opportunity. We as a culture need to get over this notion that needing help with physical bodily functions is an affront to one’s dignity. This is the logic of ableism.
Assisted suicide is so often framed as an autonomous choice, but when you listen to the words of those who choose it, their lack of autonomy in making any choices in their lives comes barreling to light. There are many ways in which this troubling reality plays out in the lives of those individuals who find themselves targeted by assisted suicide laws and policies. For instance, in a groundbreaking 2019 report by the National Council on Disability entitled The Danger of Assisted Suicide Laws, the report’s authors write, “When assisted suicide is legalized in the context of the US healthcare system, it immediately becomes the cheapest treatment. Direct coercion is not necessary. If insurers deny, or even simply delay, approval of expensive life-sustaining treatment, patients can be steered toward hastening their deaths – and sometimes insurers help them to do so.”
We need to get over the notion that it is “undignified” for people with disabilities to need help. That’s ableism. And we need to quit pretending that those dying by assisted suicide are authors of an autonomous act of personal liberty. Instead of providing resources for these individuals to live autonomous lives and for their caregivers to be justly compensated economically for their work, we as a society are taking the easy way out and leaving little choice but for sick and disabled people, old or young, to kill themselves.
Assisted suicide represents a failure of society and that is what we need to recognize first and foremost about this phenomenon. We do not need to cooperate with the reframing of capitalist genocide of people with disabilities as a personal choice. Disabled people with autonomy don’t kill themselves. And if they lack autonomy, that is an indictment of the systems and individuals around them. “Compassion and Choices” is about anything but.
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.”
![[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)
