Posted January 1, 2025 by Alice Wong Guest Blog Posts

Dying a “Good” Death: Disability and the Assisted Suicide Debate

Nicole Schroeder

Content warnings: suicidal ideations, mentions of medical abuse and neglect

Like most disabled people, I am well acquainted with death. Death and dying are constant companions in my own life and the life of disabled community members. When I was first diagnosed with Ehlers Danlos Syndrome at 19, my geneticist was primarily interested in determining what type of EDS I had. Ruling out vascular EDS was the first thing that we needed to do. Veiled under that comment was the whispered implication “because if you have vascular EDS you might die, so why invest in your care if you’re actively dying?” Pain relief for dislocations, digestive support for gastroparesis, fluid support for orthostatic intolerance – these were less important, the geneticist argued, than determining whether I was dying. In the past decade, medical professionals have been far more interested in tracking my potential death than supporting my daily life.

My relationship to death is complicated. At times I have fought fervently to survive, at other times I have begged for the simplicity of death. When I underwent brain surgery at 22, I knew that I might die in the operating room. When I woke up with no pain relief because the pain management team messed up, I begged to die. At 27, I started developing allergic reactions resulting in anaphylaxis. Epi pen in hand, I frequently wondered which reaction would be my last. I went to a slew of doctors, none of whom could figure out why I was having constant reactions.

I underwent countless appointments, expensive testing, and was continually gaslit and neglected by medical professionals. I was told that mast cell activation disorder wasn’t real (it is very real). I lost twenty pounds in a month and I reacted to anything I consumed. I began to throw up stomach acid because I could consume so little. I moved back home with my parents. As my reactions got worse and doctors shrugged in confusion, I grew desperate. Starving to death and having daily allergic reactions to things like sunlight on my skin or warm shower water was torturous. I made an ultimatum with myself: if I could not secure care, I would take my life.

I began to consider what death would be like. I looked up assisted suicide programs across the world. In doing so, I came across countless stories – some in favor of medical euthanasia, others firmly against it. I found news articles, white papers, research articles, and personal stories about the benefits and harms of assisted suicide. I read stories of disabled people who felt compelled to choose death because the world framed them as burdens. I watched interviews detailing flawed ethics and issues of consent. I came to think very differently about death.

In the years to follow, I talked with disabled community members about DNRs and end-of-life wishes. Disabled people do not have the luxury of putting these conversations off. There is no “don’t worry about that yet, you’re so young.” Death looms over us all, especially if you live in poverty. While this can be overwhelming at times, it also positions us well to navigate and moderate conversations about death.

I had the privilege of living at home near my pépère as he underwent palliative care after a cancer recurrence in his late 80s. I watched my mother and aunt coordinate his care – from hiring nurses to taking up caregiving themselves. Our family was able to grant him the death he desired. Medical infrastructure, though, was severely lacking. Supports for symptom management, delays in securing tools like an adjustable hospital bed, and a total lack of mental health support for caregivers demonstrated to me how underfunded palliative care is in the United States. Even though we had to fight the medical industrial complex for any useful tools, my pépère had many moments in the last months of his life that were full of joy, happiness, laughter, and love.

My mémère was also able to die at home, but her death was far different. While my grandfather died in 2020, my grandmother died last year in 2023. She had a fall that resulted in a brain bleed and developed advanced dementia. She was scared, confused, and overwhelmed by the flurry of medical activity around her. While my family was able to grant her a death at home, this one was far more complicated as she could not communicate verbally and was not capable of consenting to choices made about her care. Frequently, medicine failed us. She was admitted to a rehabilitation facility with no air conditioning, no COVID protections, and few staff. My family had to be hypervigilant to ensure she was fed and bathed with any regularity. We paid for 24/7 external care to stay with her at the facility because we didn’t want her improperly overmedicated as typically happens in these spaces. As soon as possible, we removed her from that space. We were able to do this solely because my grandfather had a pension (and widow’s benefit) that provided funding for private care.

Amongst many others, these experiences have shaped my relationship with death. In all of these cases, medical and welfare supports could have improved the experience of death for everyone involved – for those dying, for caregivers, and for extended family members. I don’t think an early death, in any of these cases, would have necessarily been more “humane” or “dignified” than those that occurred. While these experiences are deeply personal, I believe they are emblematic of broader concerns with assisted dying.

In my opinion, those protesting against assisted dying laws are not asking dying people to suffer. The issue is not as black and white as people believe it to be. Those of us protesting do not want people to be in needless pain, instead we want resources other than death to alleviate suffering while people are still alive. We ask that policies ensure that no one is coerced or forced into choosing assisted dying. Similarly, we demand that policies are solid and that there are no legal loopholes to them. While internet debates have been furious over the past few weeks, I think we all want the same thing: an experience of death that honors and values the individual’s life. We differ, though, in what that experience looks like.

The recent bill in the UK, the Terminally Ill Adults (End of Life) Bill, is the most recent national legislation in a slew of euthanasia bills passed over the last thirty years or so in various countries such as Canada, the Netherlands, and the United States. The history of assisted dying, though, is rooted in a much longer eugenics-centric history. Historically, medical professionals in the 1800s and early 1900s recommended that euthanasia be used “in medical cases of untreatable illness” or for “newborn[s] with severe physical abnormalities.” Despite its roots in the eugenics movement, today twelve countries around the world permit assisted suicide in certain localities and certain cases. Right to Die Societies around the world are likewise pushing for expanded access to these programs for people who are not deemed terminally ill, citing that the right to die is rooted in individual liberties and compassion as “it is not always possible to relieve suffering.” Those in favor of assisted dying believe that we can enact legislation to ensure that the right to die is not abused by the state and that it will not be used to forward eugenics.

Many disabled people, though, rightfully worry about flaws with existing laws, future applications/expansions of existing laws, and the persistent devaluing of disabled lives. In the UK, 350 different disability rights organizations came together to oppose the Terminally Ill Adults bill. After the passage of the bill, Disability Rights UK wrote that “We stand firmly against a law that risks pressuring Disabled people into decisions driven by fear, desperation, or lack of options rather than genuine choice. This legislation could deepen inequalities and reinforce societal biases that view Disabled people’s lives as less valuable.” Other organizations like Disabled People Against Cuts have likewise raised concerns that the bill does not offer clarity regarding the definition of “terminal illnesses.” Organizers also worry that the bill includes no safeguards against coercion, and that the law will disproportionately harm multiply marginalized and minoritized individuals.

Those in the UK are rightfully concerned about broad terminology, narrow supports, and the rampant cultural devaluation of disabled lives. The UK bill proposes that an individual is deemed “terminally ill” if a person “has an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment” and “the person’s death in consequence of that illness, disease or medical condition can be reasonably expected within 6 months.” Concerningly, doctors “wrongly predict how long terminally ill patients will survive in half of cases” according to a 16-year research study on the subject. Also, many people with chronic illnesses fit under this description who do not consider themselves terminally ill.

While some believe safeguards can be added to the bill in the future, history proves otherwise. In 1998, Dr. Gregor Wolbring reported that “every safeguard put forward at the beginning of the [assisted dying] debate [in Canada] has already been broken beyond repair.” Internationally, governments in the 1990s were offering assisted-suicide beyond cases of terminal illness and severe pain. Likewise, safeguards regarding the age at which an individual might request legislation, the mental health condition one must prove in order to demonstrate capacity for consent, and the ways in which the state must prevent coercion have all been violated on a global scale. Over and over, disability rights organizations have echoed the same concerns, highlighted similar loopholes, and pointed to a slew of violations. In the US, the National Council on Disability reported on failing safeguards in 2019, noting that “the most prevalent reasons offered by someone requesting assisted suicide are directly related to unmet service and support needs.” How much evidence must we offer, over how many decades, to substantiate change? While pro-assisted suicide advocates claim that these laws are not being used to forward eugenics, we have ample evidence that in particular cases they are used for these ends.

Over the past decade, legislation has expanded in scope and safeguards have further even fallen away. In Canada, “Track 2” was introduced in 2021. Medical assistance in dying (MAiD) expanded from those whose death was “reasonably foreseeable” to anyone with a disability that severely impacts their quality of life, including mental health conditions. Reporting has evidenced that disabled people have been coerced to choose MAiD after being denied accessible housing, mobility tools, welfare assistance, and timely care for symptom management. Those in poverty have chosen MAID to escape horrific living conditions and marginalized people face even greater coercive pressures from medical professionals and welfare officials. While the aforementioned articles offer clear instances of coercion, cultural pressures also loom in the backdrop. In 2023, 1 in 20 deaths in Canada were tied to MAiD. Of these, roughly 45-50% of those using the program cited “perceived burden on family, friends, or caregivers” as a “cause of suffering” that compelled them to choose MAiD. For those in Track 2, who were not terminally ill, 47% noted “isolation or loneliness” as a predisposing factor. People are clearly suffering, but many are suffering from a lack of meaningful supports. As assisted dying programs expand, a cultural resonance follows. This cultural framework implies that living with significant medical or care needs is burdensome and that you should choose death because palliative care poses challenges for loved ones. In a hyper-capitalist world where palliative care costs an exorbitant amount of money, insurance frequently denies claims for supports and loved ones often do not have the time to perform caregiving because they need every working hour to scrape by, assisted dying offers a financial reprieve that is important to many people. The fact that death alone offers financial relief, time relief, and potentially relief from emotional distress is heinous. Death appears to be cost efficient in a world where healthy nondisabled people are considered valuable while older, sick, and disabled people are financial liabilities.

Despite the ongoing and active resistance of disabled people, it seems that assisted dying is only growing at an international scale. Safeguards have been violated for decades and yet new legislation continues to pass. At the same time, welfare cuts and gaps in medical care grow exponentially. In my opinion, assisted dying offers a neat and clean excuse for governments to further cut services instead of interrogating their failures. The core question at the heart of this debate is not “do you believe people have the right to die without suffering” but rather “what is an acceptable amount of collateral for you to have a peaceful death?” Can you drink a death draught while knowing that someone else is drinking the same draught with a metaphorical gun to their head? Can you entrust your death to a medical industrial complex that largely fails to keep you alive and well supported? Why invest in death when we could invest in better palliative care, better pain management, better caregiver supports, and better mental health care?

When I die, I hope that I pass without worrying about financial concerns. I hope that I have ample choices and that I feel empowered in enacting them. I hope I feel no guilt, shame, or worry about needing care. I hope I can easily navigate care systems, secure symptom management, receive pain relief, enjoy time with my loved ones, and manage my increasing care needs. I hope I can hire people to support me and I hope that family caregivers who wish to be involved are paid a fair wage. I hope that doctors honor my wishes, and I fervently hope that I am never pressured to pursue assisted dying. I wish that we could all die a peaceful death, grounded in personal choice, consent, and bodily autonomy, but that simply isn’t possible in the eugenics-driven world we live in today. Until I can be sure that no one else will be denied resources as a result of my death, I will pursue a natural death.

ABOUT

A young white woman sits outdoors, smiling at the camera. Her brown hair is cut in a long bob with bangs and she has oversized rose-gold glasses. She wears a pink blouse with silver buttons down the front and brown slacks. In the background you can see a patio with iron chairs, and a fir tree lit up with blue lights for the holidays.

Nicole Lee Schroeder is an assistant professor at Kean University in Union, New Jersey. She studies how disabled people navigated welfare in early America and she teaches in the fields of disability history, early American history, and Atlantic world history. Nicole is also the founder of the Disabled Academic Collective, which is made up of over 950+ disabled undergraduates, graduate students, faculty members, and staff. The DAC provides support to disabled academics affiliated (and unaffiliated) with universities across the globe.

Dying a “Good” Death: Disability and the Assisted Suicide Debate