First Person: A disabled person in the age of MAiD

Jordan: Hey, it’s Jordan. I wanted to do an unscripted intro today because this episode of The Big Story is a lot more scripted than usual and so I’ll explain why A few weeks back I read a piece by a disabled writer named Gabrielle Peters. She was arguing for MAiD free spaces within Canadian Healthcare, and I thought it was a really interesting perspective. I thought mostly that it’s a perspective I’d never heard before. We’ve spoken to no shortage of experts on MAiD on this podcast. It’s been an issue that we’ve covered a lot. We’ve spoken to academics, we’ve spoken to doctors. We’ve never spoken to a disabled person who sees MAiD as something scary, something that they are pushed sometimes to consider, and given that one of the reasons MAiD exists is to offer people struggling with terminal conditions a chance to end their life, I think it’s kind of strange how missing from the conversation this perspective is. So we reached out to Gabrielle and invited her on the show. It turns out that Gabrielle is having some difficulty speaking and we wanted to find a way to still allow her to share her view. So what we’ve done today is we’re interviewing Gabrielle using text to speech software. So yeah, it might not be the usual back and forth that you’d hear in a typical big story interview, but what you will hear is something that you probably haven’t heard before. It’s a perspective on MAiD that, yes, is Gabrielle’s own perspective and her own story, but in all the discussion around this issue, I can’t remember hearing this before, so I think it’s important that we bring it to you because that’s what we try to do on this show. I hope you take as much from it as I did. I am Jordan Heath Rawlings and this is The Big Story. Gabrielle Peters is a disabled writer, a policy analyst and is the co-founder of Disability Filibuster. Gabrielle joins us now via text to speech. Hello, Gabrielle.

Gabrielle Peters: Thank you for having me.

Jordan: Can you begin maybe by explaining the disability paradox, especially as it’s seen in doctors because I think it’s going to help inform a lot of this conversation.

Gabrielle Peters: Catherine Frazee provides a good example of the disability paradox in her book, Dispatches from Disabled Country. At a medical appointment, she asked the doctor about the possibility of anemia. The physician replied, of course you are anemic. You are anemic because you are depressed. You are depressed because you are disabled. The diagnosis of depression was based entirely on the fact she’s disabled. The disability paradox is a term coined by Sol Levine back in 1987. It is used to express the difference between what non-disabled people, especially healthcare professionals, assume about the quality of life of disabled people versus how disabled people themselves rate their quality of life. That is doctors and others assume that a disabled person has a low quality of life because they are disabled. This obviously can have significant consequences when it comes to healthcare decisions at the policy or bedside more so than ever since the legalization and expansion of euthanasia in Canada. A 2021 United States survey found that out of 714 United States physicians, 82.4% believed that disabled people with significant disability have worse quality of life than non-disabled people as well. Only 40.7% of physicians felt very confident they could provide the same level of care to disabled patients and just slightly more than half of respondents strongly agreed they welcome disabled patients into their practice. Other research such as a paper from 2003, which looked at the quality of life assessments made by people with a variety of conditions concluded whatever makes up happiness or quality of life, it appears that many illnesses have far less impact on subjective quality of life than many of us would predict. Related to this term is something called the obliged conflation, which is the conflating of disability with suffering. The two are seen as synonymous. All of this is made worse by the presence of epistemic injustice and in particular the overconfidence of healthcare professionals about their knowledge of what it means to be disabled in the related dismissal and absence of value given to disabled people’s own knowledge. The danger of the disability paradox is significant not only in regard to healthcare professionals deciding to suggest MAiD and in their assessments for MAiD, but also in advanced directives. All these people are operating from a place of profound prejudice and ignorance. There are a couple of other things I would like to say about the disability paradox, including that while non-disabled people find this term interesting, what it describes is not news to disabled people. I often think all roads lead from epistemic injustice, but ableism is more of a closed loop. We are disbelieved and ignored because we are devalued. We are devalued because ableism goes unchallenged. Ableism goes unchallenged because what we say is not valued. We are devalued because we are disbelieved and ignored and around again. The fact the paradox persist generation after generation speaks to how the underlying cause of the different perspectives on our quality of life remains unaddressed. Pointing out a manifestation of discrimination does not eradicate discrimination. Disability paradox exists because ableism exists and is embedded in the institutions culture, economy, politics, and social relationships of our society. It labels one of the effects of ableism, but it does not actually attack that alone and pack it. I mentioned this because we have a habit in our society of confusing the ability to put a label on something with understanding it. Understanding that the disability paradox exists and that it persists is a good entry point for a much deeper and more difficult conversation about ableism in the history and current conditions of disabled people in Canada.

Jordan: Can you maybe explain to us your own experience of becoming ill and seeking treatment and then as you put it, how you were moved in categories from normal but sick to then disabled and unfixable?

Gabrielle Peters: First, I want to say that the healthcare system I experienced in the mid two thousands was already in crisis due to decades of underfunding and efficiency oriented government policy. I watched it worsen in real time from a hospital bed. Even once I was able to get out of bed, there was no one to help me shower. In nine months of continuous hospitalization, I had two showers when I was readmitted a few months later with a systemic infection. The morning routine that included helping me with a bed bath, brushing my teeth, et cetera, was regularly missed. The nurses just didn’t have the time. Other patients had family members step in to do what nurses once did, but those without family went without help. I remember sharing a room with an elderly man who had c diff, a fairly contagious bowel infection. He was also incontinent when the nurse threw his soiled incontinence brief in the open trash came between our beds. I asked if that shouldn’t go in one with the lid and the nurse who at this point was already almost out of the room simply said, no time. So I would attribute the harm I experienced to medical ableism and to the deliberate underfunding and reshaping of Canadian healthcare by successive governments. The two of these together is not simple addition. Rather because the restructuring of Canadian healthcare happened within an existing framework and ideology that already viewed disability as a diminished state of human. The result was ableism on steroids. The rhetoric we saw in the media about people living too long and ominous warnings of a great tsunami and science having gone too far in saving lives that should not be saved along with political calls for privatization, which decried the excessive burden of high cost healthcare users all trickled down. For some healthcare professionals, this meant disabled. People like me were to blame for what was wrong. Healthcare in their minds would work great if not for all the sick people, especially the ones who can’t be cured. There was a period when I was perceived as a healthy person with some sort of temporary illness which caused my asthma to flare and my muscles to become weak and inflamed. In this situation, the healthcare system is designed to help you get back to work and living your life as a contributing member of society. It is imperfect full of bias, discrimination, varying degrees of competence and laziness, but back then especially this was where a patient had the best chance of a good outcome with healthcare. But when I not only didn’t get better but started to become sicker and no one was sure why and suddenly I was off the main path and in a far more chaotic system filled with large noticeable gaps you could fall through initially. During this period, things went as you might expect, I was sent to a variety of different specialists who each seemed to have one or two conditions they would check for. These were always the most common and well-known diseases. One rheumatologist simply looked at my fingers and declared I didn’t have arthritis and sent me on my way. I had no symptoms or complaints related to my hands. Mostly I was struck by how easily and readily doctors would simply shrug and send me on my way. After telling me again that I did not have a diagnosis I already knew I did not have during this time minus a diagnosis, part of me kept thinking I would wake up refreshed the next morning, so I was navigating my own denial, confusion and a healthcare system that requires you to have laser focus, a suit of armor and ambassador level negotiating skills and my experiences with healthcare professionals was also changing. There were sufficient objective markers of illness, so most doctors didn’t dismiss me entirely, but that did not stop one or two from doing so. At one point my family physician shouted at me to stop coming to her office hoping for a diagnosis. Shouted is not an exaggeration. People in her waiting room were shocked and unsettled. During this time I started to question myself. My own mind was my mind lying about my body and keeping it a secret from me. I wanted so much to be well, but could there be a part of my brain that was working against me? At the same time, I knew I was unable to will my way out of becoming more ill. I was frightened of what would happen if someone didn’t diagnoses and treat whatever the cause was. One of the biggest surprises for me was that one could be deemed a bad patient for wanting healthcare. I had naively always assumed the term non-compliant was limited to those who did not want healthcare, but it is really about patients who do what doctors tell them to do. These both sound the same, but they are not. I didn’t realize that until I was a patient asking for tests or physiotherapy or for more time spent trying to sort out the cause of a symptom, not just medicate to mitigate it. Any relief I felt over finally being diagnosed was short-lived rapidly. I transitioned to someone who was never going to be cured and the more I became visibly disabled and the more assistance I required, the more I experienced open resentment, judgment and disdain as if I was a waste of space, resources and their time. I was never going to be normal, so what was the point in providing me with all this extra care I needed more yet I was perceived to being worthy of less. The equation simply does not work in my favor.

Jordan: When that happened, what changed in terms of the treatment you got or how people in the healthcare system worked with you on your illness?

Gabrielle Peters: The easiest way I can explain what changed is that people in healthcare stopped fighting for me to live or even to have optimal quality of life while I was alive. It felt like it went from we don’t know what’s wrong with you. Maybe it’s all in your head to you’re unfixable, so there’s nothing we can do. For some. This went further as they suggested that I was just prolonging the suffering meaning my own and that of anyone forced to care for me, anyone who had to be in my proximity or pay taxes that funded my healthcare and the sooner I died the better and even among those who didn’t articulate it quite as openly the idea that there was no longer a point in suffering because I would never be normal, so it was both the assumption that my life was nothing but suffering and that suffering only makes sense if there is hope of being normal. My feeling was that hospital staff blamed people like me for the feeling of being overwhelmed, burned out, and sometimes having insufficient resources for the people they valued

Jordan: You as well as some others. As part of the piece you wrote are now advocating for MAiD free spaces within the healthcare system, why is that

Gabrielle Peters: About the suicide contagion? We worry about hospitals are one of the places suicide clusters can occur. I can tell you about how most of us can remember moments when we might’ve surrendered to such a suggestion and are very glad no one made it. I can tell you about how those of us who advocate against MAiD can’t shower off the dehumanizing impact of this discussion or deny the way it harms us to have to explain. It’s not a nice thing to tell us. You think we would be better off dead, but nothing I say can explain the feeling of being in a hospital bed entirely dependent on the care of the strangers around me and having a DNR thrust at me. I can’t explain the seismic shift in that moment or the lingering trauma it has left. I knew the system and those working in it were not always working for my welfare and that I had to navigate by a system, but it never really occurred to me until that moment that some of them not only wished me dead, but were thinking about how they could make it happen. We know that many believe it is better to be dead than disabled, but we don’t need it said to our face when we are seeking healthcare. There is a lot of research about the impact on people’s cognition and mood while hospitalized and we seem to ignore that the vulnerability and the power imbalance among other things in this discussion. To be honest, I find this question the most difficult to answer because I think the answer should be obvious. There was a reason they had to make an exemption to the criminal code because we normally view counseling someone to commit suicide to be a crime. Do these spaces already exist elsewhere in the healthcare system and if so, how did they come to be? Well, first of all, it depends on what you mean by MAiD free. Escaping discussions about MAiD feels impossible at this point, but at least being away from where it is carried out gives us a little buffer. Ideally, I would like Canada to be MAiD free. I do not believe that this country, its state or healthcare system are competent, equitable and unbiased enough not to do incredible amounts of harm. Basically, some reasons are similar to why I object to capital punishment. My primary reason for opposing capital punishment is I do not trust that innocent people would not be killed by the state. The same issues arise around MAiD consent is not a firewall. First of all, false confessions happen in criminal justice and systemic barriers cause some innocent people to plead guilty, believing it is easier to just give in rather than try to fight odds that seem stacked against you. Others might plead guilty to protect someone else or because they are being coerced to do so and the criminal justice system is designed with at least some level of awareness of all of these things. The medical system is not disabled. People exist within a society that tells us we are less human and a burden. Healthcare is ground zero for ableism. The medical model of disability gives doctors epistemic authority and a unique level of power over our lives and medical ableism believes itself to be science, not discrimination. We are all dependent on others to live, but disabled people’s needs are not normalized and address the way others are. An example I often give is imagine if you had the right to vote but the government put almost no resources into making voting possible. Few thousand ballots, a dozen polling stations open for four hours on one day. How real is that? Right? Would I object to capital punishment? In theory, I frankly don’t know that I can answer that question with any certainty because it’s impossible to predict how a just society would shape my thinking differently. It is difficult to find concrete discussions of this, but as far as I know other countries do not oblige places to offer physician-assisted suicide or euthanasia.

Jordan: I’m not asking you to speak for anyone but yourself here, but can you give us a sense of what the discussion around MAiD is like when you work with disabled people?

Gabrielle Peters: It’s a struggle to find a way to explain our experiences and understanding of the world to non-disabled people because although we may occupy the same spot on a map, we don’t live in the same city or country. I asked a disabled friend Jeff what he thought of the following analogy I came up with. I said, let’s imagine your sink is clogged and you call a plumber. They arrive and take a look at your house and pull out a bomb. They tell you one option is they could blow up your house, which they argue isn’t all that great anyway in their opinion, but don’t worry, they will only detonate the bomb if you say yes. Do you feel more reassured or do you want to call the police and have them arrested? At first, Jeff gave an enthusiastic yes, but after a few minutes he texted thinking about this more and in some ways being offered MAiD is worse because at least with a bomb I can say, no, you can’t blow up my house off, but with MAiD I thought, well, maybe I should consider MAiD, maybe I shouldn’t be. A burden MAiD is like a bomb, but there is also a whole system designed to convince you that the bomb is actually okay, that the home you love is awful and should be destroyed and that you and others would be better off if you blew up your home. There are just so many narratives and ways to tell us what a burden we are on others cognitively, I know that I am not too much of a burden to deserve to live. I know this because if I am too much of a burden, it means that people who I love who are disabled are also too much of a burden to live. I understand the idea of setting a standard by which someone becomes too much of a burden is established by billionaires and trillionaires whose excessively large negative impact on the planet and people is never considered part of these calculations. Emotionally, I have to remind myself of this. For me the overt pressure is less effective. I am a fighter and if you come at me demanding that I die, I will do my utmost to make you regret doing so. I am incontinent and lost all my teeth from medications, illness, and because healthcare excluded the mouth and mind among other things, incontinence is a common bogyman and the MAiD proponents top 10 reasons you know should be dead. They should be ashamed, not me, but it’s the constant need to ask for things that others take for granted. Combined with always feeling like I am in the way and don’t work into the design of life for joy or fun, it is being forced into the role of critic and never creator. Instead of filling my life time in mind with what I am passionate to learn, try, discover, I am forced to have the same argument 1 million times. It’s never being trusted to know what I need or want. It’s being patted on the head by strangers. It’s the exhaustion of trying to fit an entire different world into the background, a part of an elevator pitch.

Jordan: How does the coverage that we see of MAiD impact disabled people?

Gabrielle Peters: How does coverage of MAiD impact disabled people? I assume you remember the murder of Tracy Latimer by her father Robert Latimer. Tracy was disabled and the coverage around her murder was extremely biased. A number of papers were written analyzing the way she was dehumanized and her murderer was portrayed sympathetically. The reason I raised this here, aside from being extremely relevant to MAiD since Dying with Dignity were big champions of Robert Latimer and had a lot to say at the time much of their ableism was less filtered before their revenues grew and they hired professional lobbyists, but the reason I raise it in this context is if you speak to disabled people who lived through that time, especially if they were young and in school, they won’t just tell you how deeply it impacted them. It will be apparent to you in their voice and delivery. I suppose you could call it disabled people’s Kennedy assassination. Many have told me about how their teachers made the class debate her murder. Others just hoped no one noticed they had the same disability. MAiD coverage has been terrible for the contagion effect, but not just for the contagion, not just because of the amount of column inches that are given to the proponents and lobbyists. Were a MAiD and not just because every one of them is a stream of ableism and dehumanizing presentation of disability, not just because a Canadian company turned a disabled woman’s death into a commercial, a disabled woman who had previously made it clear to the media that she wished to live, but poverty and lack of funding for supports she needed MAiD living feel hopeless, not just because we see celebrities talking about attending a MAiD death like a Yelp review for a new must try restaurant. Everyone is talking about not just the romanticizing and lauding of those who sign up, but on top of everything else, the coverage has largely excluded us. There are the MAiD proponents and then some space is made for academics and professionals who are opposed or concerned disabled people. Those of us who are targeted by this policy, especially disabled poor people, disabled have no role to play in this public discussion.

Jordan: I guess what I’d like to know at the end is understanding that MAiD exists and that some people do want to utilize it is how can our healthcare system be both compassionate and caring and give our all towards disabled people without pushing them in that direction, but also make sure that everyone knows their options. Are there good ways to have that conversation that maybe we don’t use now or we haven’t even found yet?

Gabrielle Peters: You have to be disabled to apply for MAiD. This is especially clear in the case of Track two. In the case of Track one, people are also disabled, but maybe more recently so and have little lived experience of it, but everyone who applies is disabled. This is also why MAiD is fundamentally a discriminatory policy. The only disabled people who are not aware of MAiD are disabled youth and children whose parents have tried to shield them from the heartbreaking knowledge that the country they live in has such a regime. There’s no need to raise mate with us. There is no compassionate way for a healthcare professional to suggest we would be better off dead than disabled. At this point. We have clear evidence of people articulating they prefer to live with support, but given that what they required was not funded, they opted for MAiD. We know this only because these people left evidence while alive. The dead don’t file complaints. We have a responsibility to exercise the precautionary principle. Do we know that various social, cultural, economic and political pressures exist that could push disabled people towards MAiD? The answer is clearly yes. We don’t have to wait for the body count, and I am curious to ask Canadians, what is the number they have in mind? How many disabled people pressured into MAiD must die for that number to be too high? Is there a limit? People in my community are not okay. We are angry, tired, frightened and grieving. Many disabled people talk about living on spite when feeling incapable of anything else. We will not give society the satisfaction of killing us. We will fight and never surrender to the non culpable homicide design just for us, but make no mistake, even those who have not been killed by MAiD have been irrevocably harmed by it.

Jordan: Gabrielle, I want to thank you for sharing your perspective. It is one that, as I mentioned, we don’t hear very often, so really appreciate you working with us to make this work and letting our audience hear from someone who has this direct experience. So yes, sincerely, thank you. Thank you for having me. That was Gabrielle Peters joining us via text to speech software. We wanted to reach out to Dying with Dignity Canada to give them a chance to respond to Gabrielle’s comments about their past activism and we did, and this is what they said, “Dying with Dignity Canada was founded in 1980 as a Canadian society concerned with the care and treatment of the terminally ill and the quality of dying for all Canadians. The issue of end of life rights and choice in Canada have changed and developed over the decades based on the political and social climate At the time the focus of DWCs early advocacy efforts have evolved and our current priorities are firmly linked to the country’s present day assisted dying legislation. It is our position that those living with a disability should have the same right to autonomy and end of life choices people all across Canada. We acknowledge that people have different experiences in the healthcare system to ensure equitable treatment. We encourage all levels of government to work with and directly consult individuals with disabilities and disability groups to ensure their concerns around safeguards are addressed while respecting autonomy rights. We also recognize the great need for improved investments from provincial and federal governments and disability support and benefits to ensure those who receive them can thrive.” Again, that’s from Dying with Dignity Canada and that was The Big Story. I hope you got a unique perspective from this episode that you wouldn’t get perhaps by hearing from another doctor or expert. If you’d like a transcript of this episode or any episode of The Big Story, they are on our website, The Big Story podcast.ca. Click on the individual episode and scroll down to the bottom where there is a button to click here for a transcript. You can also send us feedback on this episode or any other by emailing us at hello at The Big Story podcast.ca or by calling us and leaving a voicemail. 4 6 9 3 5 5 9 3 5 is that number. The Big Story is available in every podcast player and it’s on your smart speaker. If you ask it to play The Big Story podcast. Joseph Fish is the lead producer of The Big Story. Robyn Simon is also a producer on this show. Chloe Kim is our editorial assistant. Mary Jurban is our digital editor. Stephanie Phillips is our showrunner. Diana Keay is our manager of business development Sound Design. This week was done by Robyn Edgar and Christian Prohom. I’m Jordan Heath-Rawlings, the host and executive producer of this show that makes us together. Frequency Podcast Network, a division of Rogers. We’ve got a really interesting episode of in This Economy and a really fun blast from the past on Sunday. We’ll be back with a fresh, Big Story on Monday, we’ll talk then.