Two weeks ago I went to the ER in extreme pain. Normally, I live with level ten pain. I’ve gotten used to it. In a flare, I’ve learned not to moan or cry out.
But this pain, which started out as a small annoyance, spread and went down my spine, then, into my chest and abdomen, became unbearable. I had to go to the ER.
I’m usually treated as a drug seeker when I go in, even though I’m allergic to all opioids and opiates. But blood tests showed cardiac enzymes in my blood and they admitted me.
While in hospital, I experienced a frightening event. My pain level was so high that it caused my blood pressure to skyrocket to 240/120. The pain was so bad that it was literally putting stress on my heart and my heart was about to give out. There were at least 10 doctors and nurses in the room, working to get my pain level, and thus, my blood pressure, down. In desperation, doctors decided to give me Dilaudid, a medication that I am allergic to, and Benadryl, than risk me having a heart attack.
I didn’t realize pain could do that to one’s body.
Even with the unrelenting pain that I have been going through, I still don’t want to die. I want my doctors to think outside the box, as they did that day. They tried other pain meds, which did nothing, then, made the decision to give me a pain medicine that I’m allergic to because they could deal with the allergic reaction; they could not deal with me having a heart attack.
If people are afraid of dying in pain, why not fight for better access to pain management and palliative care so that this won’t happen? This tells me that it’s not about dying in pain, it’s about the right to die, itself, and the proponents are so into themselves that they cannot recognize that assisted suicide laws put people in danger. The right to die becomes the duty to die, especially if you are from a marginalized community.
Now, having experienced pain that can take my life, I’m on a mission to keep that pain at bay. But, in doing so, I’m exposing myself to the racist practices of pain clinics that refuse to prescribe opioid and opiates to their patients. Black women, especially, are not given correct amounts of effective pain medications to manage our pain. I asked my doctor to indicate in my records that I live with pain, and what happened when the pain got too bad. It was explained to me that until I’m assigned a doctor, no one will see that information, meaning that as usual, because I’m Black, I’ll be treated as a drug seeker even though I’m allergic to almost everything.
Why do assisted suicide proponents fight for assisted suicide while saying that they support palliative care and pain management? Because once again, it’s not about pain or the fear of it. It about the right to die. They use fear of pain as the catch, to bring you in because nobody wants to die in pain, but it’s really about them not wanting to be disabled because they feel that is undignified. They don’t want to live the life of being disabled, so they use pain as an excuse to push their right to die agenda.
Even as I was going through this incredible pain, I wasn’t thinking, “let me die”. I was thinking, “stop this pain so I don’t die”! I was literally thinking, “I don’t want assisted suicide, I want pain-free, or at least, manageable pain that can be addressed.”
When whole communities of marginalized people aren’t getting the healthcare we need, access to pain treatment that isn’t steeped in racism, and cardiac, diabetes, cancer and other treatments that aren’t steeped in racism, how can you support assisted suicide?
As this is normalized, meaning more and more states pass assisted suicide laws, we’re going to see a frightening trend of marginalized people requesting assisted suicide because they were “convinced” that it’s a good thing by family members or doctors.
As long as there are marginalized communities who deal with healthcare disparities, there is no place for assisted suicide anywhere in this country.
Announcement from the Patients Rights Action Fund, Eat Breathe Thrive and the National Association of Anorexia Nervosa and Associated Disorders (ANAD)
Please join us for an international panel discussion on The Risks of Assisted Suicide Laws for Disability and Eating Disorders Communities to take place:
THURSDAY, AUGUST 29TH 2024 | 12:00PM EST – 1:15PM EST / 5:00PM – 6:15PM BST
This panel will explore the significant risks that assisted suicide laws pose to individuals with disabilities and those with severe, long-standing eating disorders.
As these laws gain traction globally, their disproportionate impact on marginalized communities often goes unnoticed. We will discuss how stigma influences both the creation and application of these laws, particularly in ways that harm people with disabilities and chronic mental health conditions. The panel will also examine how societal biases can lead to dangerous assumptions that certain lives are less worth living, less worthy of care and healthcare dollars.
Our panelists include:
Anita Cameron: A prominent activist and Director of Minority Outreach for Not Dead Yet, with extensive experience in disability justice and advocacy.
Diane Coleman: President and CEO of Not Dead Yet, a disability rights activist and advocate against assisted suicide and euthanasia.
Jules Good: Programs Coordinator for the Autistic Self Advocacy Network and founder of Neighborhood Access, focused on building accessible communities.
Natalia Hicks: Director of Community Justice & Health Equity at Inclusion Canada, with a focus on the intersections of disability and mental health.
Our co-chairs include:
Matt Vallière: Executive Director of Patients Rights Action Fund, dedicated to protecting patients from the harms of assisted suicide legislation.
Chelsea Roff: Executive Director of Eat Breathe Thrive, dedicated to preventing and helping people recover from eating disorders.
DATE, TIME & LOCATION
This event will take place online via Zoom on Thursday, August 29th 2024, 12:00PM EST/5:00PM GMT through 1:15PM EST/6:15PM GMT
COST
FREE
Join us for what is shaping up to be an amazing event!
In 2014, in connection with whether assisted suicide laws would ever be expanded to include people with cognitive decline, Barbara Coombs Lee, then director of Compassion & Choices, said, “It is an issue for another day but is no less compelling.” This was a momentary slip.
The political strategy of Compassion & Choices, the primary organizational proponent of legalized assisted suicide, has always been to sell the concept to state legislatures by asserting that it would only be an option for the dying. They advocate for the Oregon model where eligibility for a lethal prescription is limited to those who due to a terminal illness have less than six months to live. The argument goes that assisted suicide has nothing to do with disabled people except those who happen to be dying.
Scratch the surface and the picture is different. Legalized assisted suicide has a disproportionate impact on people with disabilities for several reasons.
First, virtually all people who are terminally ill have health related functional impairments. The leading reasons why individuals choose assisted suicide are disability related and psychosocial in nature such as perceptions of lessened autonomy. One study indicates that a fear of going into a nursing home – which is a quite reasonable fear for many people with disabilities – is much more likely to fuel a desire to hasten death than pain. In other words, people think about suicide not because death may be near but because they are unsure about how to deal with the practical problems and devaluation that come with needing help or accommodation in daily activities. As Vincenzo Piscopo, CEO of United Spinal Association has said, “inadequate resources to provide home care and fear of being a financial or care burden is the motivation for overwhelmed severely disabled people to kill themselves.”
Of the 884 people who died by ingesting lethal drugs obtained under California’s assisted suicide law in 2023, 45 people were reported to have ALS, 24 had Parkinson’s disease and 8 multiple sclerosis. The hallmark of these conditions, although they may have end stages, is physical disability.
The second reason is that for purposes of determining eligibility, doctors may take a very expansive view of what constitutes terminal illness. One example is anorexia. A Colorado doctor, who has provided lethal prescriptions to three young people with anorexia, has spearheaded an effort to recognize a new clinical disorder called “terminal anorexia”, which would apply to the small fraction of patients for whom “recovery remains elusive”. As recounted in the New York Times, the motivation for the label was that it would give people “a formal diagnostic acknowledgment that they were dying, making it easier for them to access hospice care — and even, should they want it, and should they live in a state where it is legal for terminally ill patients, and should their physicians be willing, a physician-assisted death.” This is circular reasoning. In my opinion, it is prognosis by semantics. Fortunately, there has been considerable pushback by both health professionals and advocates.
In Colorado in 2023 though, 9 people died by assisted suicide where the terminal condition was identified as “severe protein calorie malnutrition.” Before 2021, no such cases were reported. In California in 2023, 11 people reported to have endocrine, nutritional and metabolic disease died by assisted suicide. It is not known how many of these people in these states had eating disorders or restricted caloric intake for other reasons.
Third, the ethicist Thaddeus Pope promotes voluntarily stopping eating and drinking (VSED) as a “bridge” to assisted suicide under the Oregon model. He has described a case in Oregon where a woman with early dementia, who didn’t qualify for assisted suicide any other way, used VSED with the help and support of her medical team for four days whereupon she was diagnosed with the “terminal disease” of dehydration. She requested a lethal prescription and promptly received it, with the waiting period between the two requests being waived, because she now had a short life expectancy (without treatment). Pope is candid that she made herself terminally ill as determined by her doctors and is untroubled by it.
Every competent adult has the right to decide what to eat and drink and whether to eat or drink at all. The issue here is selectively promoting VSED as a back doorway to assisted suicide. This would mean that with a doctor’s cooperation, any significantly disabled person could meet eligibility criteria by manipulating circumstances to become terminally ill. Indeed, the idea of medical complicity in making someone eligible for assisted suicide is extremely chilling and has obvious implications for the whole disabled community.
The fourth reason is that in large part due to the health disparities we are subject to, people with disabilities face a greater incidence of physical and mental ailments, including obesity, diabetes, cardiovascular disease, addiction, and mental distress, as well as increased rates of morbidity and mortality. According to a piece in Stat, nearly half of people with disabilities say they are in bad health. Statistically, this means people with pre-existing disabilities become eligible for assisted suicide under the Oregon model before others do. Moreover, suicide prevention services are among the health care services that we struggle to access. It is a perfect storm.
None of this is surprising. The premise of assisted suicide laws is that a person’s health status may make it reasonable for them to kill themself. The Oregon model embodies the “better off dead than disabled” ethos in thin disguise.
[Dated July 27, 2024] Yesterday, Lord Falconer of Thoroton (Charlie Falconer) introduced a Private Members Bill (there’s an explanation of what they are here) to make it legal to assist people who are terminally ill to die.
As a group of disability rights campaigners, Not Dead Yet UK are deeply concerned about this course of action.
Like many disabled people, we are conscious that attempts to build legalised suicide into healthcare can be profoundly discriminatory – if a non-disabled person wants to die, their doctor does not give them the means to kill themselves.
We want the same care and respect to be given to terminally ill people if they are suicidal.
Rather than legalising the suicides of disabled people, we argue that the only safe way forward is better investment in palliative care and a commitment to improving the things that people often cite when they apply to die in other parts of the world, such as a lack of dignity and feeling like a burden.
Can an assisted suicide law ever be “safe”?
Charlie Falconer told The Guardian, “My bill is designed for people who will die in the near future. I don’t think the state should be helping people who are not terminally ill to take their own lives.”
However, this does not reassure us.
We have seen, again and again, across the world, that laws that begin with relatively strict parameters, such as terminal illness, expand and expand until people with treatable conditions, children, and people who simply can’t afford accessible housing end up being approved to die by assisted suicide.
While Falconer assures us there will be “safeguards”, in reality, these safeguards are virtually impossible to implement effectively. Even the idea that doctors can accurately predict when a person has six months left to live does not reflect reality.
And in a world where there is growing awareness of coercive control, and where we know that many do not receive adequate or appropriate medical care, pain management or social care, we are creating the conditions for people to find themselves agreeing that yes, they should probably die, including to avoid feeling like a burden, when providing them with what they actually need to live could allow them to enjoy and participate in their own life again.
What if good care stopped us from wanting to die? Where are the proposed laws to provide everybody with compassionate and appropriate care instead?
Can Falconer succeed?
Falconer has already failed at changing laws in the area of assisted suicide six times, as detailed here, but he hopes that this iteration of the Assisted Dying for Terminally Ill Adults Bill will be the one that enables assisted suicide for terminally ill people.
Private members’ bills, especially from Lords, are generally thought to be an ineffective way to create a new law. According to Politics Home, “almost all Private Members’ Bills fail. In all sessions of each Parliament between 1997 and 2015 generally only between three per cent and six per cent of bills succeeded”
What could be different this time is that Keir Starmer, the new Prime Minister, seems to be keen on legalising assisted suicide. Earlier this year, he said that if he became prime minister, he would ensure parliamentary time was made available to debate the issue and he would allow a free vote (where politicians vote according to their conscience and personal beliefs, not according to what their political party wants).
Falconer told LBC that he “strongly feels the time for this reform has come”, but presumably he felt the same when he introduced attempts to change the law in 2009, 2013, 2014, 2015, 2019 and 2022 too.
However, with the Prime Minister on side, this time, disabled people could find ourselves under threat in an unprecedented way in this country.
Over and over again assisted suicide proponents claim that disabled people who oppose assisted suicide are a “vocal minority.” For instance, American euthanasia advocate Thaddeus Mason Pope ridiculously wrote on X that “millions” of disabled people want the right to have “MAiD.” Well, it’s not true.
Assisted suicide, even in its more conservative form, is opposed by United Nations Special Rapporteurs on the Rights of People With Disabilities. In 2021 every disability rights organization in Canada and several ally organizations like Black Lives Matter Toronto and Reproductive Justice New Brunswick signed a letter telling the Canadian government not to expand its assisted suicide program to disabled people who weren’t dying, because the Canadian government’s decision to privilege the autonomy of a few disabled people would force the rest of the disabled community to become members of a killable caste. One can see evidence that disabled proponents are in the minority by comparing the webpages of USA groups Compassion and Choices and Not Dead Yet. NDY lists 17 national disability rights organizations that oppose assisted suicide. In contrast, C&C lists 4 state disability rights organizations who have said that the Oregon model of assisted suicide is acceptable.
Disability studies literature shows a similar pattern. In his essay in Disability Bioethics, Harold Braswell asserts:
“The framework of this debate limits the potential for disability discrimination. PAS is itself a moderate iteration of the right to die. And this moderate iteration is, in the USA, only available to individuals who are terminally ill. This makes the American interpretation of PAS relatively conservative even relative to other countries where it is legal. This conservatism makes it possible for some disability bioethicists to justify supporting it, though such support is still relatively marginal within the field.”
Yes. As someone who has also studied the euthanasia issue, I can tell you that support for assisted suicide is “marginal within the field.”
Self-proclaimed “disability rights advocate” and unrestricted assisted suicide enthusiast Christopher Riddle also admits that his efforts to sell death to disabled people set him apart from most of the disability studies field. In his article “Assisted Dying and Disability,” Riddle writes:
“While academic literature has a multitude of perspectives on this issue, the public attitude amongst mainstream disability rights scholars, activists, and more generally, people with disabilities, is relatively consistent in its position: assisted dying should not be permitted.”
In an British Medical Journal article entitled “Disability Community Feels Ignored in Canada’s Assisted Dying Expansion,” Sammy Chowm writes:
“While some in the disability community support MAID expansion, the vast majority are opposed. More than 100 disability organisations have opposed track two and the 2021 bill given the gaps in mental health services their community needs.”
Yup.
Proponents like to point to commissioned polls, like the one paid for by the recently formed USA astroturf group UsForAutonomy, or the Populous poll commissioned by Dying With Dignity in the UK. However, there is no way for the proponents to prove that the majority of people who answered those anonymous polls were disabled. I live with disabilities that most people cannot perceive at first. When I’ve sought accommodations for my invisible disabilities, I’ve had to present rigorous documentation that they exist. Therefore, I think it’s reasonable to take the anonymous poll respondents’ claims to be disabled with a grain of salt.
There are also polls that indicate that the majority of disabled people oppose assisted suicide, such as one commissioned by the disability rights organization Scope in the UK. However, I doubt that polling is the best way to gauge people’s positions on various issues. I think people can probably get any result that they want from a poll, if they ask the right questions and the right people.
As for the few disabled people I know of who support assisted suicide, it seems to me that they generally fall into two categories of people: the privileged and the despairing. Such disabled people need to be considered in respect to intersectionality and the high suicide rate in the disabled community.
The first category of disabled people, who typically spearhead the legalization of assisted suicide for people with disabilities, generally fit the profile of the rest of the “aid in dying” proponents: they are privileged. Apart from being disabled, they are usually wealthy and white. Hence, they have the resources to circumvent some of the structural ableism and interpersonal pressure that pushes other disabled people towards PAS.
Nicole Gladu and Julie Lamb, the two women who lead the fight to remove Canada’s “reasonably foreseeable death” standard for assisted suicide, are quintessential examples of what I mean when I say that a disabled supporter is otherwise privileged. Both people would have qualified to die under Canada’s “reasonably foreseeable death” standard for assisted suicide, but they were not willing to compromise and wait until their deaths were imminent. Gladu lived in a mansion by the ocean, and she demanded the right to kill herself before her death was “reasonably foreseeable” so that she could die “with a glass of rose champagne in one hand and a canape of foie gras in the other.” Julie Lamb was also affluent, white and married, and she fought to remove Canada’s reasonably foreseeable death standard so she could plan her death down to the very minute that suited her whims, whether that be tomorrow or in ten years. She said, “I am comfortable and happy with my days. But it is a huge relief and gives me so much peace to know that when I am ready, I do have a choice.” So, a judge gave her her choice and now every other disabled Canadian has to live in a society where doctors and suicide hotlines suggest that they kill themselves.
As for the less privileged type of disabled person who wants “MAiD” because of suffering and despair, it’s not shocking that the right to die movement can find disabled people who would like assistance to kill themselves. Research indicates that disabled people have a much higher suicide rate then the general population. For instance, I met one disabled woman on X who is one of the few disabled people I’ve met who supported Canada’s “Track 2 MAiD program.” She was living with severe psychiatric suffering, trauma, poverty and other forms of dysfunction. She had reached out to several government and medical agencies seeking help but did not get it. I and a few others tried to reach out to her with other resources, trying to encourage her to live, but it was as though she lacked the reasoning ability or wherewithal to respond to those offers. Tragically, she killed herself “the old fashioned way” about two weeks ago.
Another disabled Canadian who supports “Track 2 MAiD” tweeted that he wants it to exist because he perceives that he is “a loser, failure, and a disabled guy who gave up long ago.” He tweeted, “I’m not seeking MAiD for an extra $1000 a month. I have barely gotten $1000 a month for twenty years, the damage is done. Never healed or grew roots, developed agoraphobia and bulimia from eating junk and living in abusive slums. My best twenty years gone. TOO LATE!”
I empathize with both of these people. I’ve experienced severe depression and eating disorders; I would never judge someone for being so overwhelmed by their circumstances that all they can think about is death. But, a legal and medical system built on the philosophy of “It’s too late, kill yourself,” is not conducive to helping other disabled people lead happy, healthy lives. A person tweeting under the username F-k Capitalism expressed a similar sentiment: “Yeah. Like I said, I don’t judge individuals choosing MAiD. It’s sad there was no support for them and I hope they’ll find peace, but it’s the pushing of that choice onto others, esp by wealthier disabled people that constitutes lateral violence.”
Exactly. I’m angry that there isn’t more support for such individuals and I strongly support giving them better support, but giving such persons exactly what they want right now goes too far. I can have empathy for such individuals while also holding that is unjust for their suicidalideation to become the basis for a public policy that affects everyone else. And that’s the position on assisted suicide that prevails in the disabled community.
* First published on August 1, 2024 by the Euthanasia Prevention Coalition.
Meghan is an autistic person who is an instructor at E4 – University of Texas (Austin) and an EPC-USA board member.