Broadcastability

Season 3 Opener: Checking in with Four PROUD Researchers

• The PROUD Project • Season 3 • Episode 1

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In this first episode of the third season of Broadcastability, hosts Chloë Atkins and Lark Huska speak to four PROUD researchers and the work they are doing. We speak to Isabelle Avakumovic-Pointon, a PROUD Research Associate and PhD candidate in History at the University of British Columbia; Kayla Saunders, a PROUD Fellow and Master of Library Science student at the University of Toronto; Matthew Palynchuk, a PROUD Fellow and PhD candidate in Political Science at the University of Toronto; and a Parnian Safaraifard, a PROUD Placement Student and Occupational Therapy student at the University of Toronto. 


Credits:

Interviewers: Chloë Atkins and Lark Huska

Editing: Lark Huska

Artwork: Isabelle Avakumovic-Pointon

Music: Justin Laurie

Transcripts: Charlotte Flameng

Chloë: [00:00:00] Welcome to season three of Broadcastability: a podcast by, for, and about people with disabilities. We're very excited by the upcoming episodes because this season we focus on research and disability. We highlight individuals who are undertaking research in disability at a variety of levels and in different locales. We interview students, advocates, academics, and professionals who offer distinct perspectives on composing and carrying out research on disability. 

In this first episode, we speak to members of The PROUD Project community: a research associate, two PROUD fellows, and a clinical placement student. We begin with Isabelle Avakumovic-Pointon, who is undertaking a PhD in History at the University of British Columbia. She has been working with PROUD for about four years. We then speak to Kayla Saunders, a student in Information Library Sciences at the University of Toronto. She is a 2024 PROUD Fellow with a deliberate focus on improving the accessibility of libraries. We conversed with Matthew Palynchuk, another PROUD Fellow, who is finishing his doctorate in Political Theory. Finally, we talked to Parnian Safaraifard, a student who did her community field placement with PROUD last fall. 

These are only a handful of people who are part of The PROUD Project, but we hope that it will offer you a glimpse of the wide-ranging interests and activities that go on here.

Isabelle: [00:01:25] What I'm really studying is sort of the emergence of disability policy, and that that's again very shaped by my work with PROUD. I'm interested in how policies actually play out in normal people's everyday lives.

Chloë: [00:01:40] Isabelle presents a fascinating portrait of her studies, in particular of how historical research makes us more enlightened about the present.

Isabelle: [00:01:50] Hello everyone, my name is Isabelle Avakumovic-Pointon. I use she/her pronouns. I'm a research associate with The PROUD Project, and I started as a production, podcast production assistant, research assistant, back in, I think, 2021, which is nearly four years ago now. So, yeah, I know, I know. That's pretty, pretty wild. So happy to be here talking about my work.

Chloë: [00:02:14] It's wonderful to see you. And just to give people who don't know, you're also doing your PhD now in history, focused on disability at UBC. Yeah, I'm always happy to see you Isabelle. But okay, so let's get to the brass tacks: so how did you get interested in disability?

Isabelle [00:02:28]: So, actually, a lot of it had to do with PROUD. I mean, I grew up, I was, you know, diagnosed with several mental illnesses when I was very young, about six, and so that's always been a part of my life. And then my mother developed a chronic illness when I was young as well, and that sort of shaped our family life, and so it's always sort of been, you know, disability, and these questions have always sort of been in my personal life, but I never really thought about doing them sort of academically professionally research, until I saw a job posting for The PROUD Project was looking for a podcast assistant, and I had done some work with podcasting, and I thought, well, that's really interesting. Like I never really thought about scholarly study of disability, so let's try that out. 

And through that, I got to understand how sort of the personal and the political, and the professional and the academic could all come together. And when it was time to think about what to do my PhD thesis on, I'd done my master's on Women and Gender in the early 20th century Balkan Peninsula. And I knew that was a really interesting topic, but it wasn't quite, wasn't quite, I don't know, it didn't have the spark that I was looking for. 

And then I realized, wait, what about studying disability? Like, of course, there's still issues of gender in that as well. And I thought that's very understudied. So it was sort of a mixture of my longstanding academic interest in marginalized groups, plus my personal experiences and my work with PROUD. That sort of all converged very nicely to guide me towards the research I'm doing now.

Chloë: [00:04:08] That's very cool. I mean, it's great that you're so linguistically inclined as well, so you can do work that crosses to other cultures.

Isabelle: [00:04:17] So, to specify my PhD research, my dissertation is about disability before the First World War. So I'm looking at the from, like, 1878 to 1914. So what I'm studying is quite a ways back, right, out of living memory. And so that sort of adds a bit of emotional distance from what I'm studying. So it's not quite as contentious as a lot of topics are in the region right now.

Chloë: [00:04:44] Do you think anything that you're doing—you're working historically, which I think is... I mean, you're an historian, and I think you're right, It does reduce the emotional sort of kickback that you could feel. But do you think anything you're studying now will have impact on others, or even is having impact on you as you do it? So it's changing what you think of the future?

Isabelle: [00:05:05] Yeah, I mean, I really hope it does. I don't want it to be a sort of insular, you know, pet project of mine. What I'm really studying is sort of the emergence of disability policy. And that that's, again, very shaped by my work with PROUD. I am interested in how policies actually play out in normal people's everyday lives. And one thing we focus on in PROUD is, as I said, that gap between what's written on paper, in the laws, and then what happens in real life. And, of course, a lot of contemporary studies, we find that there's a lot more promised on paper than people get in real life. And that's sort of a problem around the world. 

And the time and place I'm studying, I'm finding almost the opposite, which is very interesting, where there are very, very few formal laws or policies that guarantee really any protections to disabled people. It's very, very limited in the period I'm looking at. But in practice, you see, you know, governments and other institutions providing financial and other forms of assistance to disabled people, even though there aren't formal policies telling them they have to do that. And I find that very, very interesting, sort of looking at the inverse situation. And this is not to say that it was an effective program, or that, you know, the majority, or even a significant number of people experiencing impairment received support from any sort of government. But it is interesting to see that sort of the gap goes in both directions. And again, not to say that that's equal. I would say, obviously, for my impression is that it's much more common for people to receive less than they are promised. 

But it is interesting to see that in certain circumstances, they can receive more. And the factors that go into that are often similar factors. That we see in policy implementation today, right? It's people who understand how to talk to government, how to navigate these bureaucratic systems, people who have connections in high places, people who are able to express themselves using sort of language that the government will understand. And so there's some really interesting continuities in, you know, if you're a Bosnian peasant, a lot of the same factors that will help you get support in 1880s are similar to the factors you need to have in order to get support even in the 2020s. And so that's a really interesting thing to see. It really highlights the sort of the factors that impact how policies actually play out on the ground. 

And again, there's also the problem with literacy, that most of the people in the societies I study are not able to read or write. And that... really changes the power dynamics.

Chloë: [00:07:58] I mean, even the fact that literacy is a low level means that firsthand accounts are very difficult. Because people who write firsthand accounts, most of them aren't literate, and oral things just
aren't carried down. I mean, in the same way.

Isabelle: [00:8:10] Well!

Chloë [00:8:11] Oh, I do tell me.

Isabelle: [00:08:12] Yes, but! So this is a real big problem for a lot of historians and anthropologists, and anyone who works with or studies societies where literacy is not high. That's just sort of the main problem is that you don't have medieval peasants writing down their diaries and their feelings. So everything is sort of filtered through who's doing the actual writing. And so that's always the case. But what I'm finding is that, at least in the Bosnian case, the Austro-Hungarian administrators knew that the population they were administering had very low literacy rates. So they instituted sort of a system where people who could not write could come into the sort of local government office and present an oral petition that would get transcribed. 

And, of course, we have to be careful, we don't know exactly how many words the scribes are changing, you know, how verbatim it is, but in a lot of cases, I've found it does seem to be a very accurate rendering of the words that peasants are using. So this is a really excellent source, in that, it allows me to hear the voices of people who were not literate and usually are excluded from the record. So that's a really valuable source. And you get to see sort of the rhetoric that people are using, the ways they make their arguments, what they think will convince government officials to fulfill their needs and accept their requests. And so you see a lot of creativity and innovation. And just people who are regularly seen as uneducated, and who didn't necessarily have formal education, making very deliberate and very clever arguments in order to obtain support.

Chloë: [00:10:01]
This is one of my arguments all the way along. I've been thinking about people with disabilities are innately adaptive and flexible because they've had to be. They're very creative about it. And I think what you're saying is those are captured in these discourses that have been recorded, is how adaptive and... cunning, you know, that people have to become if they're going to survive with a trait that makes them different from others, that they have to be adaptive. And I think it's something that's great. You know, it's one of the strengths of the community and of individuals.

Isabelle: [00:10:32] One thing that reminds me of one thing that we found a lot in our research, our contemporary research. With PROUD, is that a lot of disabled individuals choose and work very hard to be self-employed. And that's something I also see, which is really, really interesting. There was this one petition from a man who had worked in sort of road construction, road maintenance for the government, and he lost his foot in an accident. I believe that was what had happened. And he was asking the government for a grant in order to start a tavern, because he could not perform sort of industrial or construction labor without his foot, but he and his family could run their own tavern. 

And I thought that was a really interesting, you know, example of the sort of the sort of practices we see today. Where people who are unable to be employed in sort of quote unquote traditional employment or industries, find ways of building environments that are adaptable to them and their working style. And it was cool to see that sort of 120 odd years ago happening as well.

Lark: [00:11:35] Kind of one thing that I was thinking about was that you said that there was no kind of legal apparatuses that required historical governments to provide for people with disabilities. In the current research that we're kind of doing, you, and just the experiences of folks with disabilities today, you see these kind of apparatuses that do now exist where disability is now refined to quite a specific definition, and then folks struggle, like, you know, to either become this opaque version of a disabled person or not. And so I'm wondering, historically, where there have not been legal definitions of disability and it has been more of this ambiguous blob sort of thing—I imagine that there are, of course, negative impacts with that. But I'm wondering if there  are any positive aspects of that that have come out of it.

Isabelle: [00:12:30] Yeah, you've hit the nail right on the head, is that one of the sort of paradoxical things is that because there was less regulation and less sort of strict definition of what benefits were and who could get them, there was more of a flexibility where people didn't, and I mean, this changes, of course, over time. And it, you see sort of an increasing formalization and regulation and specification of what disability is and what benefits people are entitled to based on their specific disability. But in the period I'm looking at, as you pointed out, it's very nebulous. And so there is more of a flexibility in that, some people get doctor's notes, some people don't, some people just say, “hey, all my neighbors know,” and so you have just people saying, “yeah, that's our neighbor who can't walk and can't, you know, plow his field, so he needs to hire someone, but they don't have money to hire someone to plow the field.” And so what counts as evidence of disability is a lot more flexible. What counts as, as you said, Chloë, you brought up the question of the deserving poor and how this is a much more flexible concept because it's not defined. And I think that in that sense, it's in a way more vulnerable to the social position of the person asking and who they have to support them. So you see a lot of—I don't have sort of the quantitative numbers to make a quantitative case for it—but I do see that, you know, often, if they have a Catholic priest who is supporting their claim, they tend to be more successful. Or if they have sort of the mayor or a local notable who is someone with a high social standing, with whom the government has relationship, then they tend to be more successful. So you have these imbalances from social position that are stronger, but it also means that you can get around some of the rigidity of, you know, “oh, you're not disabled enough, or you're not disabled in the right way, or you have to prove your need.” So in some ways, it's more rigid, in some ways, it's more flexible. But I think, I think that's a really interesting point.

Chloë: [00:14:38] We now meet Kayla Saunders, a PROUD Fellow studying at the University of Toronto. And like Isabelle, she found her way to disability studies through women and gender studies.

Kayla: [00:14:48] Hi everyone, my name is Kayla Saunders. I am currently studying at the University of Toronto. I am finishing the Master of Library and Information Science program, finally. I've been in school for seven years straight at this point, but I did start my degree in 2011, so it's been a journey and I'm very happy to be here today.

Chloë: [00:15:14]
Why don't you tell us a bit about how you got on to the topic of disability in your work, in your master's.

Kayla: [00:15:21] So I didn't really start thinking about disability or really know about it. Like, I've lived experience. I've been a person in probability all my life of having a disability. I just didn't really know how to identify that for a long time, but I didn't start thinking about it as a field of study or as an embodiment of, like, my own lived reality, until my undergraduate degree at York, because I was introduced in gender studies, to the discipline of disability studies, and the concept of disability justice, of the theory, and, as an experience, was introduced to me through one of my professors at York. She pushed a lot of that work, and it was very important to me, and it became pivotal in my understanding of who I am and what I can do. I love the concepts and the theories that go along with disability studies, because it gives name to what I've experienced and what I haven't been able to access. And I did note, even in my entrance application to UofT, I had to do personal essays, and in those personal essays, I talked about access to information. And one of the key things to access, equitable access to information, is that that information has to be accessible to everyone. It can't be equitable if it's not accessible.

Chloë: [00:16:51] I think you make an incredibly important point that I don't think many people think about, and we think about it a little. There's been some pressure, particularly in this country, in Canada, about making sure that rural areas have access to, let's say, the internet, so they have access to information. What you're saying is really, really important. And not many people who haven't experienced some form of disability understand how important that is, particularly because people with disabilities get so isolated.

Kayla: [00:17:22] Absolutely. And that, so two of the things that you just mentioned actually merge into two studies that I did. The first one I did, I live with the most prominent disability in my life is functional seizures. And one of, and I did a study on the literature that describes them. And in the field of library science, there's something called information literacy. And one of the frames, as is described by the Association of College and Research Libraries, is scholarship as conversation. So, basically, it's the discourse: who's talking and what are they talking about? So my research about functional seizures allowed me to discover what I already figured and pretty much knew, that there was no dialogue between people living with functional seizures and the medical professionals.

Chloë: [00:18:17] So if I, let me, I'm just going to try and say for listeners who may not understand this, and please correct me if I'm wrong. For instance, I was considered for many years to have a functional disorder. It turned out I didn't. So what my understanding of it is, and I'm going to be a little perverse, I'm going to twist it a little bit because I'm not medical. Is it's basically when you have something like a seizure, but it is not being caught or sort of seen through medical technology. So, for instance, and so in many instances, can be dismissed, so that, “oh, it doesn't come up on this study on the EEGs. We're not seeing it on an MRI. Therefore, it's functional”, and functional is code, often in medicine, for what we would say is “all in your head.” Right. 

And so you get sent to psychiatric, for psychiatric and psychological help. And one of the things that I always try to remind myself is that to believe that something is functional, a healthy way of thinking of it is that we simply just don't have the technology to understand why that symptom is there, and we can't see it. And therefore, if you can't, the physicians can't see it, they really don't know what to do about it, right? They don't know what to
apply to it.

Kayla: [00:19:34] Yes. That's a very good—that's actually very helpful for me because I spent years, so I spent years thinking that I had epilepsy, stayed in the epilepsy monitoring unit at Toronto Western. Um, they just discovered that every episode, as they called it, um, of seizure-like, seizure- like, as I'm air quoting here, activity that was recorded was not recorded as um electromagnetic or the. So, they didn't have it on the EEG, so they told me it was—they called it “dissociative seizures.” I liked that. The first time it was introduced to me, they called it “pseudoseizures”. My doctor called them pseudoseizures, which really hurt. 

That’s a dismissive term to me, um, which is also why a lot of the medical journals I do talk about this in my paper, 
they call it PNES, which is psychogenic non-epileptic seizures. Um, I prefer the term functional or dissociative seizures, rather than, even dissociative is a little dismissive. It's hard to put a term to it because it makes it feel like it's not real. But if I'm, you know, having a seizure, it's happening. There's no, you can't, like tell, the doctor whether they tell me it's functional or epileptic, it's—something is happening in my body. I don't know what it is. I don't have control of it. And it's scary, right? And that loss of control is absolutely terrifying. But the biggest, I guess it was, the biggest thing was in the research, it's mostly just medical professionals. There's no, there's a monologue presented in a very sterile way. In all of the medical literature that I found. So I decided in taking an approach that was like, kind of the “nothing about us without us” kind of framework. 

So I wrote a piece that provided, at this point, only my own lived experience, alongside the medical research. To kind of just enrich that conversation and actually have a conversation, a dialogue with what exists out there.

Chloë: [00:21:45] So you got interested in disability, obviously out of your own experience.

Kayla: [00:21:49] Yes, yeah, and just knowing that I wasn't alone, right? For the longest time, I had felt alone. I felt apart from, I didn't feel like I belonged, but I guess so. That feeds into my love of libraries because I'm really excited to be able to go into the field and create safe spaces in libraries. For people who felt like I felt, or feel like I feel, right? And I think that's part of the magic of libraries, because everyone just kind of gets to exist as they are. You come as you are, and a really good librarian will meet you where you're at and help you get where you want to be. 

I feel like I'm in a unique position because of my lived experience and the work that I've done so far to create spaces and information with people who have distinct needs, that I can both vouch for and prove to an institution, whether it be a municipal government for a public library, or a university, or a college for their library, wherever it is, I end up, that there is an absolute necessity to accommodate for the diverse needs of all the people who will come in and out of the library doors.

Lark: [00:23:18] Yeah, that's so awesome. If I could just jump in here, I've been thinking about how you encountered the description of your disability as dissociative. And in you discussing how doctors describe your experience versus the gap between your actual experience, that seems like a dissociation in and of itself. And it seems like in your description of libraries, you're kind of describing them as something that can bridge that gap, something that can be like, self-directed education that doesn't require that barrier of medical-ness or whatever it may be. Um, so I'm interested—I really like how you're saying, um, that you want to be this, like, instigator of change within libraries. So I'm wondering if you could elaborate on what, what an accessibility toolkit would look like for a library?

Kayla: [00:24:05] So if I want to create a photo like a visual, like just an adjust a visual, um, that is in some way informative for the library. There needs to be alt text, alternative text. The text size should be, if it depending on the size of the image, um, if it's just a tiny image, it needs to be at least 12, if it's a presentation, it needs to be 18. And these are just recommendations, right? But these are things that some people either didn't know the the presentation is old, it's outdated, or it just wasn't taken into consideration, which is okay. But from now on, if I build this toolkit and I say: “Here, take this, and please do not take offense.” Canadian libraries, you know, we're doing our best. We're really doing our best. But we can do better.

Chloë: [00:25:03] Kayla has taken the motto, “nothing about us without us,” as a central tenet of her research and in building her personal and professional community. We now talk to Matthew Palynchuk, a student who is about to complete his doctorate in political theory. His work approaches disability from a critical theory perspective.

Matthew: [00:25:22] So my name is Matthew Palynchuk, I'm a fifth year PhD student in Political Science at UofT. I specialize in the topic of disability and political theory. I'll be hopefully submitting my dissertation in October. And it revolves around disability, social movements, and various debates that are happening in contemporary political thought—yeah!

Chloë: [00:25:51] I was thrilled, to be honest, because I'm a political theorist and I've been doing this sort of work for years. And it's always been considered not really political theory, Right? And I'm just thrilled that there's that you were coming through and doing work in political theory. So I sort of watched from afar and I was like, “yes!”, there's, there's—because I sometimes think that that actually disabled individual does—I've said this for a number of years, does two things in a liberal democracy in terms of theory: It challenges the notion of autonomy, the autonomous acting individual, very deeply. And so I've always sort of felt like political theory should use the disabled person as a test, kind of when it starts to look at things.

Matthew: [00:26:32] I agree with that. Trying to show that the claims for justice and rights and equality that come from social movements for disability justice can make really, really interesting, novel claims for political philosophy that they should pay attention to.

Chloë: [00:26:52] Yeah, I'm in total agreement. So we're on the same page. And what often happens when I'm sitting in, when people get papers, often, they immediately exclude the unemployed and disabled from their discussion: “okay, well, those are…” and I just like, “no, no, no, don't do that!” So, out of interest, how did you get interested in disability?

Matthew: [00:27:11] I would say one thing that initially got me starting to think about it was, in my first year of university, my first professor in philosophy, Christopher Riddle, he's a professor at now Utica College in upstate New York. He specialized in disability, worked under Jerome Bickenbach over at Queens and Christine Sypnowich, and worked on these very topics that challenged my views from the outset, too, where it's like, “oh, yeah, it's really interesting talking about politics and thinking about moral philosophy.” And then, you know, Christopher Riddle would be like, “yeah, but how does disability fit in?” And I'd be like, “oh, yeah, that's a very good question. I actually haven't thought about that.” And I hadn't yet been exposed to so much work beyond that, that ignored the disabled perspective, that I was like, “oh, yeah, this just sounds like something we should be thinking about.” 

And so then later, when I started to read work, that was like, “yeah, disability, we'll think about that a bit later.” Or, you know, “this is a side topic,” or “this is like an applied issue.” I was very, very lucky to not have that in my thinking early on. But it was my very first philosophy professor in my first year of university.

Chloë: [00:28:29] I was thinking, as you were talking, is that it sounds strange, but as an academic and as a legal and political theorist, I really am pleased when people who don't have disabilities gain an interest in how legitimate or a legitimate discussion about what's going on around disability issues. And disability theory, you know, theories of disability. And so I welcome that there are people who are like, “oh, this is an important question that we need to sort of deal with.”

Matthew: [00:28:55] I went, I did end up doing my last semester of school to go work with Anita Silvers out at San Francisco State University.

Chloë: [00:29:03] Oh wow!

Matthew: [00:29:04] Yeah, I had, like a directed kind of study, almost like a thesis.

Chloë: [00:29:10] Really interesting. So how did then, having—It's extraordinary. Tell us a little bit about Anita Silvers, then, in case somebody doesn't know.

Matthew: [00:29:17] Yeah, Anita Silvers is one of the kind of prominent names in the political philosophy of disability, or considering disability within philosophy. She sadly passed away a couple of years ago. But yeah, I was lucky enough to study under her. She's incredibly passionate. She herself was a wheelchair user, had polio as a child, and was a very, like, outspoken, incredibly passionate, incredibly, I don't know, like, created a lot of friction in rooms in order to advance the discussion of disability. Like, many people who have met her or seen her at conferences have stories of Anita being very... Like, not avoiding conflict, not avoiding discomfort in order to make a point. 

But I also think, like, not doing that cheaply and not doing that in a way that distracted from good argumentation, either. She was just like a very, um, a very passionate person. But Anita, so yeah, she's, she's one of the, I think, some of the central figures in bringing disability into a central discussion and philosophy, in a very unapologetic, um, way. Yeah.

Chloë: [00:30:34] She was remarkable, really remarkable. So, so the nice segue onto, well, how did you arrive at your topic exactly? And what was your topic having done that.

Matthew: [00:30:52] Yeah, so when I was working with her, I was working a little bit on disability human rights, you know, about, well, if human rights are supposed to be universal, then how can there be, like particular and specific rights for specific groups? And so there's group right issues in terms of discussions, of philosophy, of human rights. I really want to show the people working on really high level, really abstract issues in political philosophy, which is one of the things I work, like, I would think my main area, show them that disability is not a token example, or, you know, this example of a tragic case or a weird exception case. But that actually not, it's, it's part and parcel of helping us think better about the bigger picture of what political philosophy is. And the kinds of, you know, um, normative principles that should actually guide a society. That, like, it, can't be an afterthought because it actually helps regulate and circumscribe the discussions that we should be having as political philosophy. And again, I don't think political philosophy is there to, like, only guide activism and boots on the ground and grassroots. I think, I think the really theoretical discussions that I think have almost very little or no application to, to, to on the ground movements. As somebody that was a part of activist movements, I don't think that, I don't think of it like, “well, you know, is justice a part of a pluralist idea of multiple values? Or is justice a singular value that helps regulate others?” You know, whatever. It's like nobody's thinking about that. When we're trying to figure out, you know, how to change policy, or what doors to knock on, or where to protest and how to, you know.

Chloë: [00:32:33] Where do you think you'll be in the future with regard to it? Do you think you'll leave disability altogether? Like, I know you're a wine sommelier. And do, so there are other parts to your life. So, what do you think you're going to be doing?

Matthew: [00:32:45] Yeah. My goal, yeah, so I'm a wine professional in Toronto. I'm very involved in that side of things. But the teaching aspect is, I think, what maybe gets to me the most or, like, gets me most motivated. And my ideal outcome is something like, teach one course a year, like an intro to political theory, intro to political philosophy, any little course I can have like that—not little, but, like, any singular course I can have where I can continue to talk about the role of disability in our theoretical discussions. Um, and then balance that with the other aspect of my life, which is around, you know, running wine bars and doing wine programs for restaurants and stuff. It's stuff like this and like and actually talking to 18- 19-year-olds you know, taking an intro course, um, on what they thought was just going to be, you know, Plato to Locke. 

Um, and like, I'm, I'm not a historian of political thought. I've never had a huge interest in it, and when I teach it, I more teach it like, “see the concept of like, you know, goodness came up here now, let's, let's talk about contemporary issues and goodness like.” And it's like, really cool to see this like nascent form of it early on, from these thinkers, from like an incredibly long time ago. And it's really, and their distinctions they're making are really cool to now, look at like contemporary debates, let's look at the relevance here, and this is how disability fits in. So that's usually how my tutorials, any of my students would tell you, that's exactly how my tutorials go. Um, like, rights, and, you know, or the the notion of like, freedom, well, freedom from, freedom to, freedom from domination. These kinds of concepts just bring it all the way back to, like, what are contemporary people talking about now, and how does this affect disability? Um, and so that's where I think I can make the biggest impact. And that's where I think there is a lot of, there's a lot of potential there.

Chloë: [00:34:49] Matthew has been deeply influenced by the first professor he encountered in philosophy, as well as by the renowned disability advocate and academic Anita Silvers. He brings disability to the fore when he teaches political philosophy. We now meet with Parnian Safaraifard, an occupational therapy student. Who did her placement with The PROUD Project last fall. Parnian presents an incredibly energetic, innovative, and political portrait of what it means to be an occupational therapist. I imagine that she will bring a broad perspective to her practice. And to the disabled people she will work with.

Parnian: [00:35:25] My name is Par, or Parnian, and I'm a student occupational therapist from the University of Toronto, and I was on a field work placement with The PROUD Project.

Chloë: [00:35:33] That's great. So when are you going to be done? How long is the program that you're in for occupational therapy?

Parnian: [00:35:40] I will be finished my last coursework and placement material by the
end of August.

Chloë: [00:35:47] Oh, wow. So soon.

Parnian: [00:35:48] Yeah, yeah. Coming to an end very soon. And then there's licensing…

Chloë: [00:35:54] Exactly then you have to pay, then you've got to pay licensing fees. Uh, for the rest of your life, or as long as you want to practice. Um, what I was going to ask you, is for people who might be listening to this, who don't truly understand what occupational therapy is, do you want to just sort of give an idea of occupational therapy, do you want to sort of give…

Parnian: [00:36:14] Yeah, that's a great question. So occupational therapy, The main focus of it is helping people do the things that are meaningful to them, the things that they want to do, need to do, are expected to do. So basically, what an occupational therapist does is, they look at what are the barriers, what are the things that are standing in their way of doing that thing and try to address those barriers. So if it's a functional ability barrier, then we do a lot of, like PT similar related to PT-related work to help them regain that physical capacity, but it could also be mental health related, so OTs also do mental health. There also can be mental health practitioners, who can be psychotherapists, so we can address those mental health barriers as well. It's also very broad. 

OTs can work with individuals on a one-on-one aspect, but also on a community level, on an institutional level, we can be in policy leadership positions, so we can also address those social barriers. Um, yeah, so basically helping people do the things that they want to do.

Chloë: [00:37:17] So it's a huge, it's a broad field of practice. So what drew you to it? I mean, first of all, not many people know about it. So what, what brought you to doing occupational therapy?

Parnian: [00:37:27] Yeah, um, so before I got into, I don't know what OT was, much like many other people, um, I was really interested in accessibility. Um, I, yeah, so once I found out what OT is, and I found out that, you know, the focus was on helping people do the things that they want to do, and, you know, like, addressing barriers and things like that, I was like, wow, okay, this is basically helping me pursue my passion for accessibility in a holistic way.

Chloë: [00:37:55] So why were you—what is your passion for accessibility? Where does that come from?

Parnian: [00:37:59] I mean, I guess that goes back into my discovery of like disability from a systemic lens. Um, yeah. The more I learned about it, the more I started to realize how much ableism I've internalized growing up. And, you know, throughout my whole academic career, where it's just so deeply ingrained. Um, and yeah, the more I learned about it, the more I got to learn about its interconnectedness with larger systems like capitalism, white supremacy, colonialism, like how it's not just about an individual experience, it's fundamentally political. Yeah, like, I basically saw how disability justice is brought part of a broader fight for liberation. I think that's what, really, that's my underlying passion, which accessibility is a way to address that in my role in society, so to say.

Chloë: [00:38:58] Did you have a family member or someone close who was disabled? Because, for instance, I have four children, and I watched them grow up, just become really acclimated to, for instance, when I was using a chair, about knowing the access and figuring it out and how. So is it, in a sense, it's been inbred in them, that sense of disability justice. And I'm wondering where yours came from. Was it just, you know, other than, there are lots of other forms of justice.

Parnian: [00:39:23] Yeah, I think... I didn't have a particular experience similar to that with a family member or like, for me, it's much more related to the other connections of disability justice, like being, a, you know, first generation immigrant from Iran. How that impacted me growing up, like, you know, going to second grade, not knowing English at all. And all of those experiences related to, you know, not being neurotypical and being late-diagnosed, all of those things. Once I learned about disability justice, I started to think about my life in a much different way. And kind of like, liberate myself from the way that I used to think about myself and the narratives that I internalized about, you know, why I was othered, or why I, you know. And also just like my passions around, like politics, it kind of is something that brought all of that together. And yeah, before, like from going from undergrad to OT school, I also did a master's in Advanced Healthcare Practice, where I deepened a lot of that understanding on like, social issues. I took a health equity course, I took a trauma-informed psychotherapy course where, yeah, all of those subjects really changed my perspective from my own experience and the way that I see the world as well.

Chloë: [00:40:57] Oh, you've done some very interesting things. And you're obviously very curious. I could ask you a ton of questions, but since I promise it won't be too long to take up too much of your time, let me leap to: when you were going for your field work placement, what drew you to doing The PROUD Project? You might describe what we did.

Parnian: [00:41:16] Yeah, so for the audience, The PROUD Project, it involved creating an online accessibility map of Toronto's Church and Wellesley area. So what we did as researchers was we visited local businesses to collect detailed information: like the number of stairs, availability of ramps, washroom features, first aid materials, all—anything that could be accessibility related. We gathered all of that information and we put it into a map so everyone can, so people can access all that information all in one place. And the goal was to reduce the burden of people with specific access needs of finding all of that information to support them in planning their outings.

Chloë: [00:41:58] Why did you choose it? Or did you, was it, you had to go? Or just tell me what the process was when you..

Parnian: [00:42:04] No, it was actually my first choice. Because when I, when I looked up, I didn't have all of the information going into it. We had a bit of a description, but, you know, looking at it from the description and also being in it, it really reflected the way that I see myself practicing as an OT. I see myself being directly in the community, facing people, building relationships. We got to build a lot of relationships with community members, with business owners, people with lived experience along the way of going to the area with our measuring tapes. Yeah, so supporting people with lived experience, people that are often excluded like that is what, what I see myself doing as an OT, so that's a big part of what drew me.

Chloë: [00:42:52] So having done this, I mean, I'll explain it a bit more. There are maps that indicate accessibility, what we're trying to do is sort of get micro-detailed accessibility. So that, let's say you have a narrow chair: you don't necessarily need a wide, and, you know, 36-foot or 30-inch door. You can probably get through a 28-inch door. But, um, you know, stuff like, there might be a perch spot inside where you can rest, which wouldn't be included in a traditional accessibility map, it might be really relevant if you're taking your dad, who has heart disease, to the doctor. And so we were trying to create these details that, for instance, if you had an adult child who still wore a diaper, that you could find an accessible bathroom that actually had a facility for changing, you know, had a change table that would accommodate them. So tell me what you think the future of this might be, what we did, and then I'd also like to know what you think your future is, what you like to where you're headed off to.

Parnian: [00:43:45] So, yeah, I think you mentioned a really good point in terms of, like, what accessibility means. It's, yeah, I think being part of this project really helped me reframe my idea of accessibility. It's when we went into a specific building where we were talking about what we're doing. A lot of times, people told us, “oh, I'm so sorry, our building is not accessible,” and we're like, okay, that's not what we're asking. We are gathering information about the built environment, and you know, that can mean that it's accessible for some people, but not for others. So, yeah, it's when we got into finding, making surveys and trying to figure out, okay, “what information do we need to gather?” It really reframed, you know, accessibility for whom? And seeing it as a—very dependent on the context, like, you know, fatigue, sensory needs, service animals, like all those things. Being part of The PROUD Project, it really took away my fear of, you know, like, going up to somebody and talking to them about accessibility, talking to them about, you know, if there's something that's not working. And people are actually very eager and encouraged to see that engagement and want to, you know, do want to make their place more inviting. And yeah, like, just developing my understanding of the little ways of doing that as well from The PROUD Project has been helpful. You know, if somebody doesn't necessarily want to make big renovations, you know, there's all these other ways to, you know, tell people that, you know, you're welcome here.

Lark: [00:45:20] That’s so interesting. Chloë and I, we have political science backgrounds and I think probably for similar interests that you have for occupational therapy, you know, you spoke about colonialism, white supremacy, and trying to enact justice—or you said, liberation, but I'm sort of thinking about it in terms of justice. And so I'm wondering, you spoke about, like, impacting your personal life, The PROUD Project placement, and so I'm wondering if there's a sense of justice and confidence that you're speaking to, that you're bringing to your professional life as well.


Parnian: [00:45:50] I mean, like every experience throughout life, I guess, and also all the experiences through placements. While I'm completing my education has been like building towards the kind of occupational therapist that I’m going to be, sometimes it's hard to pinpoint where something is coming from specifically. But yeah, I think that, um, that community building, that collaboration that we develop through The PROUD Project, being part of building a more accessible environment. By including others, by bringing people into the conversation, rather than kind of how I were to think of it before, as in, you know, there is the aspect of how policies need to be better enforced. Policies need to be, you know, there's just so much that falls short in terms of accessibility—Ontario Building Code, AODA, like, there's very little enforcement. And progress is incredibly slow, But I'm starting to get a better sense of how, you know, as a community, we can come together to do small things that can make a big difference.

Chloë: [00:47:10] I hope you've enjoyed meeting some of the people who are part of The PROUD Project. They help us ensure that we support and carry out well-thought-out programs of disability research and advocacy. I want to especially thank Isabelle, Kayla, Matthew, and Parnian for sharing their insights about disability history, access, and justice.

Lark: [00:47:30] This episode of Broadcastability was hosted by Chloë Atkins, a professor at the University of Toronto and an anti-ableist researcher, and Lark Huska, an undergraduate researcher at the University of Toronto and Communications Officer for The PROUD Project. This episode was also edited by Huska. Isabelle Avakumovic-Pointon created the artwork and Justin Laurie composed the music. Broadcastability can be found on Apple Music and Spotify and at broadcastability.ca. Broadcastability is a PROUD Project production, based in Toronto, Canada. Vist theproudproject.ca to learn more.