Transcript
Speaker: Hello and welcome to today's episode of Red Eye. I'm Jane Williams. Over the summer, we're bringing you some of the highlights of our 2025-26 season, which wrapped up in mid-May.
Speaker: We're going to be back with our brand new fall season in September. Our first live radio broadcast will be on September 19th on Vancouver Cooperative Radio CFRO 100.5 FM and streaming live at coopradio.org slash red eye.
Speaker: Podcasts of interviews from that show will be posted the following week. Coming up in this episode, we speak with Alfia Batalova about how our narratives about disability shape policies like the Accessible Canada Act and MAID.
Speaker: International Day of Persons with Disabilities on December 3rd focused on fostering disability-inclusive societies as a path forward. In Canada, the policies affecting disabled people do not always follow a consistent approach.
Speaker: Alfea Batalova says our narratives around disability shape our policies and some key laws reveal a profound tension in Canada's approach to disability rights and social responsibility.
Speaker: Alfea Batalova is Assistant Professor in Justice Studies at Royal Roads University and she is with me now. Hello Alfea. Hello, hello. Thank you for having me today. It's great that you could join me.
Speaker: How many people in Canada face disability and what are some of the key barriers that they face? Yeah. So according to Statistics Canada, a disability rate for people aged 15 years and over in Canada was around 27% based on the latest census from and we know based on Just the international statistics and Canada-specific information that people with disabilities face, some of the serious structural barriers around disproportionate level of poverty, for example, employment discrimination, inadequate social protection, and just the overall ableism that people face in the care systems.
Speaker: So those are just some of the broad but pretty significant issues. 27% of people over 15, that's a lot of people. That's just over a quarter of Canadians. That's right. Yeah. and And I don't think it often sort of registers that that is a very significant number of people. We often think of disability only in terms of visual disabilities, something that we can see, people using assistive devices, for example.
Speaker: but there are a lot of people living with invisible disabilities as well. And, you know, that level of disability that we're seeing is definitely an increase after COVID. I think it also has to do with just how comfortable people are to disclose um because historically disability has been associated with a very significant stigma.
Speaker: But I think it's it's been changing. So people who are neurodiverse, for example, maybe some of them are much more open to embracing ah that diagnosis, that identity, and and that is reflected in this number.
Speaker: Now, Alfea, the United Nations latest review of Canada's implementation of the UN n Convention on the Rights of Persons with Disabilities praises Canada's progress somewhat towards accessibility, but it also points to areas of deep concern. What negatives did they point out?
Speaker: Yeah, so I think it's important for sure to celebrate successes. I think Accessible Canada Act is definitely one of them. So the UN n Commission that tracks countries' compliance with the UN Convention on the Rights of Persons with Disabilities raised some concerns around medical assistance in dying, track two.
Speaker: that can be introduced in 2021 and that allows people with disabilities to request assisted death without reasonably foreseeable natural death compared to track one, for example.
Speaker: So that became one of the concerning areas that they highlighted. That also made me question what kind of messaging we're we're sending when we are promoting Barrier-Free Canada and we're talking about removing barriers for people with disabilities in um Accessible Canada Act, for example.
Speaker: But then we're also introducing legislation like that where ah people really question whether we can talk about something like autonomy when people choose this path in the context of injustice they're facing. So if you do not have access to supports and services and you're requesting MAID, what does that say about this goal of removing barriers?
Speaker: And do people actually have the resources before they can go to this option of MAID? I think that's the major concern, is a slippery slope of this idea of autonomy when it comes to made Well, I want to dive into that a little further, but first you talk about the power of stories and narratives to shape how we view disability and therefore to shape policy about disability.
Speaker: Talk us through a few of the narratives that are out there. Yeah, absolutely. And I think policy ah specialists, people who study policies, they talk about the idea of narratives that we have in policies, and that's not something we recognize, although it's it's deeply embedded. We often think of policies as something very technical and boring, and it's it's it's hard necessarily to recognize any kind of narrative that might be there, but it's actually there. So, yeah.
Speaker: We can often recognize who is a villain in a policy, who is a victim, who is considered a hero. So disability is often thought of as a group that is deserving, so sort sort of deserving to be receiving services and supports.
Speaker: And that's kind of how historically policymakers and welfare policies have been shaping ah the policies around disability. And so that sort of sets then certain standards in terms of how we approach disability, what kind of values we associate with it.
Speaker: ah In my research, I look at access to prosthetic devices for people who have amputations and That policy often talks about this idea of the basic needs. So making sure that we address the basic needs that people have with regards to prosthetic devices.
Speaker: But what that means is that we are covering the very basic minimum when it comes to people's needs, because the basic need is is mostly associated with your ability to feed yourself, to bathe.
Speaker: So it's like these activities of daily living is the terminology they're using. And if we are setting such a low bar, as if that's what we expect an assistive device to do for you, what kind of message then we are sending around the flourishing, the you know the life of a person with a disability?
Speaker: Can we then inspire someone to do more than that, to go beyond this basic need and basic activities of daily living, right? What about meaningful employment or doing something that you value in your life? There's absolutely no conversation, no mentioning of that in the policy. And and to me, that that, again, that tells a story. It tells a story about then how we view a life with a disability. Well, we we don't necessarily value it that much, or we set very low bars, for people with disabilities. So those are some of the things I mean when I talk about these narratives and the stories embedded into policies. The medical model of disability is again a very widely used idea that we have in policies. For example,
Speaker: any kind of services and supports usually requires a confirmation, a verification by a medical professional. so individuals are required to to go to a doctor, get that official recognition that they are indeed disabled, and then receive their services, the services and supports. And and while, you know, there might be definitely some reasons behind it, what I'm more interested is, again, what kind of stories we are telling about disability when, again, we are promoting the social model of disability. We're trying to say that it's a society that needs to change, ah not the individual. The medical model is still pushes you to talk about disability in terms of diagnoses. in terms of what's wrong with you, in terms of what needs to be fixed, this deficit-based idea of disability. And so again, those are very conflicting messages about disability.
Speaker: Well, let's come back to what we were talking about before, these contradictions between important pieces of Canadian legislation. So opposing the Accessible Canada Act and ah medical assistance and dying, too, that you you've mentioned, made.
Speaker: Can you talk about what lenses these two sets of laws use that differ in their narratives about disability? Yeah, so Accessible Canada Act is definitely an important piece of human rights legislation. It emphasizes inclusion, accessibility, removal of barriers, the vision to remove barriers in Canada by 2040.
Speaker: And there's been definitely a very long road to get to that legislation, lots of advocacy from many groups, disability advocates. And it looks at sort of addressing some of those systemic barriers that I mentioned earlier that people with disabilities face. So that's sort of one idea. It's aspirational.
Speaker: It's kind of positive, again, in the kind of message it conveys. And then you have MADE as a contrast. it's It's again, as I mentioned, promotes assisted death instead of focusing on how do we actually bridge the gap in terms of lack of access to some of the essential medical disability and social supports that people experience. And and so i do provide some examples of that.
Speaker: And again, it's with ah with a goal to bring some of these narratives together and understand how they fit into this larger story about disability.
Speaker: Well, I think a really important thing about MAID is that MAID can be a very compassionate way of relieving somebody of their suffering. But what I think a lot of people fear is that somebody might be forced into choosing that because they're not getting the supports that they need. but Can you talk about some stories that have emerged where disabled people might choose medically assisted dying to stop suffering that could be better alleviated by social policy or supports?
Speaker: Yeah, so the story that comes to mind is the story of a 66-year-old Norman Meunier in Quebec who requested medical assistance in dying following a hospital stay last year that left him with a severe bed sore. And so he he died a few weeks later.
Speaker: he requested MAID. And the report that came out, the coroner's report, highlighted the need for guaranteed and prompt access to something that...
Speaker: Norman didn't have. It's a therapeutic mattress for patients with spinal cord injuries. And so that's sort of just one example of that lack of supports and services can result in this choice, which, you know, you can argue is not really a choice because if you don't have the the essential services and supports,
Speaker: are you really in a position to choose or is it really then a matter of desperation and you having you know no other ways to address it? So there's also lots of stories that were popping up in the media ah in the last couple of years. But I was also interested in looking at not necessarily maid-related stories, but stories that focus on people pleading, requesting coverage of very, again, vital medication ah for different conditions, whether it's spinal muscular atrophy or some other neurological disorders.
Speaker: And again, the stories are very individualized. They're kind of shown to be unique and that it's it's only these particular individuals who are facing it. And and thankfully for the stories that with two of these people are requested the coverage for for the medication, they have achieved that continued coverage after the a lot of advocacy and pressure.
Speaker: But I think it raises a question of whether then this kind of access becomes a matter of individual advocacy. Is that kind of where we're at, where we are individuals only have to rely on themselves and media and and sort of the support of the community to change the their coverage and guarantee the coverage? I think that's what's Very concerning because I i don't see these cases as um ah unique. they they're
Speaker: In a way, you hear you hear a lot of the stories where people start some sort of ah money raising campaigns to guarantee that something something so vital.
Speaker: you know if you If they do not secure that, right the question is, what other options do they have? I think that's something we need to think about and to be more critical about how we we treat these cases. Because if it's, again, it's it's a matter of individual individualizing disability, making it, again, about a matter of specific diagnoses,
Speaker: I think, again, we're not then addressing the fundamental and some of the structural issues. Like, well, what can we do to ensure that people do not have to plead for for the coverage every time they run out?
Speaker: So that's that's some of the things i um umm kind of I was trying to grapple with in this article. Alfea, what do you think is the path forward? What are your thoughts on how we can re-examine and realign the stories behind Canada's disabilities policies to just better recognize and support disabled people and their strengths and their struggles?
Speaker: So yeah, I think some of the ways to do it is through listening to the voices of people with disabilities. I mentioned in my article, the late activist Alice Wong, who started this great project. It's called Disability Visibility Project.
Speaker: that brings together the voices, the stories of people with disabilities. And it's not just about ah sharing a story. it's It's also about using the stories for a positive change, celebrating the very unique knowledge that people have, which again, is is I don't think is recognized as much. i think it's still a matter of tokenism. like we we say we we listen to, we include people with disabilities, but I don't know if it's um often done in a way that is...
Speaker: meaningful and truly deep. So I think just engaging more deeply with the stories that, and then I provide a few examples in the article of Catherine Frazee, who is based in Canada and who wrote this amazing book, Dispatches from Disabled Country. I highly recommend it because it does provide a very unique way of looking at disability from a kind of like, I don't know, more of a philosophical and maybe humanity's perspective.
Speaker: So yeah, I think those are the things. And and again, just like looking at the um disability policy in a much more critical way. so are we consistent in the kind of messages we're conveying? What are some of the disconnects? How can we align the policies better?
Speaker: I think some of those those are some of the things we can we can do. I really thank you for joining me today. ah And it's really something we should be thinking about. Thank you very much.
Speaker: I've been speaking with Alfea Batalova. Alfea is assistant professor in justice studies at Royal Roads University. You can find her article called Disability Rights Are Shaped by the Narratives Embedded in Policies like Accessible Canada Act and MADE on theconversation.com.
Speaker: You've been listening to the Red Eye Podcast, produced by an independent media collective based in Vancouver. If you enjoyed this episode, it would be great if you left a review on Apple Podcasts. It helps other people to find us.
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Speaker: I'm Jane Williams. Thanks for listening.
