Debra Thompson 00:00
From the Institute for Research on Public Policy, this is inequality a special series of the policy options podcast exploring the many facets of inequality in Canada through conversations with experts. I’m your host Deborah Thompson. Today I speak with Dr. Michael Orsini, a professor in the Institute of feminist and gender studies at the School of Political Studies at the University of Ottawa. His work focuses on social movements, health, politics, and policy and disability justice. Disability is often left out of the conversation when we discuss inequality. What sorts of issues do we notice when we look at policy with a critical disability lens? Keep listening for this compelling conversation. Michael Orsini thank you for coming on the show with us. I’m so pleased to have you here, in part because, you know, I think your work is incredible. And you were really first on my list of folks that I wanted to talk to, in part because disability justice so often goes undiscussed when we talk or think about inequality. I have a personal connection to, to all of this, my niece, I don’t even think you know, this, Michael, my niece is nonverbal, autistic, she has a Global Developmental Delay. And really watching my sister try to navigate this labyrinth of bureaucratic ineptitude has been just incredibly heartbreaking. You know, she’s worried all the time. And she spends all of her free time trying to figure out physiotherapy and speech therapy and getting support and trying to find summer camps that will take her autistic nonverbal daughter, and trying to make sure that educators understand the unique needs of, of her daughter. It’s so frustrating for her. And ultimately, so important, because we’re talking about somebody’s life, and somebody’s well being. So with that being said, I’m so happy that you’re that you’re here. I’d like you to just start us off by describing the the broad focus of your research and how it is you you came to study it.
Michael Orsini 02:17
Yeah, well, first of all, thanks for the invitation. It’s a real pleasure to be with you. And to talk about what are really a set of complex issues that are not reducible to sort of a one liner response, and so hearing about your experience of your knees is, is something that’s familiar to me as a researcher, and I also need to preface this by sort of kind of explaining my own sort of positionality as a sort of non-disabled critical policy scholar who is trying — consistently trying to learn and sometimes to unlearn, you know, I think, some of the some of the settled assumptions, but I guess I would start my start or, or interest in issues around disability justice and policy was probably about, I don’t know, 15 years ago, or something a long time ago, when I started a project that included you know, as a political scientist, you can appreciate a case related to autism. And it was like, yeah, this will be one of three or four things I was going to be interested in and, and eventually the case, which was around autism kind of overtook the entire project and began to kind of structure my own thinking. And so the experience that you sort of describe of trying to navigate this labyrinth of system in which you have to become kind of full time advocate is one that I began to encounter when I was starting to do kind of field work with folks, including parents. And I think the thing that became really clear to me as somewhat interested in critical stuff and critical policy was that we were talking about disability and not talking to disabled people. And it was kind of like, uhhhhh and so that began for me kind of a journey around how do I as a scholar, who doesn’t have that kind of lived experience begin to think about that and also to think about how parents — parental perspectives are critical, but sometimes parents have a particular way of thinking about disability that, you know, not not to blame folks or to cast any shame, but that that really kind of comes from the perspective of trying to overcome, trying to forget, address in a way that doesn’t emphasize the disability. And from a sort of policy perspective, that has some attraction, right? Because folks don’t want to see disability so much. And so yeah, so the autism was the was the beginning for me. And I kind of have circled back to doing some of that work. But I think the first thing that became really clear to me was that we, as people who were studying or researching, we’re so behind what people in communities were thinking, you know, and to say that was humbling is an understatement, I think. I mean, you know, this is someone who does work in community as well. But I think sometimes people, experts, policy people, political science, experts, claim a kind of moral authority. And that just, it crumbled for me, as far as what I knew and didn’t know and should know. Sorry, for the roundabout response to that.
Debra Thompson 06:08
No, that’s amazing. I want to pick up on something that you mentioned really early on, and kind of in that introduction to your work, you mentioned that you are a critical policy scholar, and I’m wondering if you can give us a sense of how being a critical policy scholar, like what’s the difference between just being a policy scholar, or someone who works in public administration? What does a critical do?
Michael Orsini 06:31
Yeah, thanks for thanks for the question. I think I think about that all the time. But I guess the starting point for me is, with critical policy work is, is to challenge the kind of divide between expert and kind of lay perspectives on knowledge so that the privileged role of experts in policymaking is something that is, you know, has been certainly certainly a constant for a lot of folks. But the starting point for me is always, you know, sometimes I sound like a political scientist, but it’s this kind of puzzle of how do people with no access, very little access, who are with assumptions baked into how they’re understood, how do they actually get stuff done? And so a critical policy sort of lens helps me to think about that helps me to think about how different perspectives make it into policymaking, different perspectives, that kick at the mainstream, you know, really kind of challenge dominant ways of knowing, dominant ways of thinking. And so it’s not specific to disability, but I think it’s been useful for me. Useful and also, you know, like anything, exposes the limitations of your own sort of thinking and approach and sort of one thing critical people have not been super great about is trying to think intersectionally trying to foreground race and sort of that’s coming along. But I think some critical people are really committed to a progressive vision that is, well, not terribly progressive, I guess, I would say because it limits its focus. But yeah, the critical for me is always kind of about subjugated knowledge or knowledge that doesn’t sort of see itself reflected, and how to kind of unearth that and how to bring it to the fore, because it’d be we all look at power, we’re all interested in power for God’s sake. But the critical part, is, is one that certainly accounts for those different kinds of knowledge, but also how they’re embedded in this thing we call neoliberalism or broader kind of structures. I mean, you think about that with your own work, too. I think, every time we feel that we have a handle on how we see the world and how we’re what kind of lens or framework we’re going to use to think about that we’re challenged, you know, and that’s good. But it’s unsettling. And I’ve seen that with the critical stuff. And I’ve seen that in disability, you know, if we have a chance to talk about that, and in terms of how, you know, Equity, Diversity Inclusion, those letters, as we say, really miss disability.
Debra Thompson 09:39
Yeah, that’s exactly right. And I want to I want to pick up on that, in part because you mentioned intersectionality earlier, and it seems to me that in the language of intersectionality, which I think we frequently misinterpret, you know, like it’s always originally meant to be about structures of power and like axes of oppression rather than the subjective identity positions. But when we talk about intersectionality, we do we miss we miss disability all the time, we also miss age, we frequently miss class, race and gender / sexuality seem to be the ones that that we most often kind of get to in this language of intersectionality. But I want to talk a little bit about the shift in awareness. I think that’s happened over the past 10, 15 years, maybe, you know, this is debatable, and let’s talk about it. You know, the ideas of neuro diversity and neuro divergence are now in, I think, the standard lexicon of how we think about human difference. And that really wasn’t the case 10, 15 years ago. Like not, not at all. And I wanted to ask you, you know, to what extent has the shift in our cultural understanding led to, to political action. You have this really great article in the Canadian Journal of Political Science called Autism, neurodiversity in the welfare state. And you write that, and I’m going to quote you here, “autism forces us to confront the ways that disability and disabled people have been marginalized from policy processes and public policy discussions related to diversity and disability.” Is this still the case? You know, I know you probably wrote that article five or six years ago. And, you know, how do you think this, this change the shift in our cultural understanding of disability and autism, like, what are the effects of that shift? And how far do we have left to go?
Michael Orsini 11:36
Yeah, thanks. Yeah, that article was, like, 10 years ago. You know, I think I think in some ways, it’s kind of… a double edged sword is not the is not the right way to describe it. But I think there are some real benefits in thinking about thinking with and hearing lots of talk about neurodiversity. It has been sort of extended outside of autism, but it was initially sort of applied to autism. But I think just as the language of diversity has been kind of drained, emptied, voided of its significance, I think there’s a little bit of that around neurodiversity. So that, you know, sometimes people say, well, we’re all a little neurodiverse, or neurodivergent. And it’s like, no, actually. It’s possible to sort of say that there are folks who, whose brains are wired differently, and they interact with the world differently. That doesn’t mean that it’s a universal experience. Because sometimes that universality kind of flattens difference, you know, but, but so, you know, it’s always concerning for me when a term becomes kind of part of the lexicon at the same time as it’s nice that people don’t have to have a long conversation with with others about what it means to be neurodivergent. And I see that, for instance, like, I don’t know if you experienced that at McGill, but and maybe it’s because I taught a disability studies class, but a bunch of students just kind of said, hey, you know, I’m autistic. I have ADHD, I’m bipolar. And it’s kind of like, Yeah, okay. As and so the lifting of that stigma, I think I would celebrate that I think lots of people should celebrate that. I just think we need to be wary of the way in which it’s mobilized sometimes, in ways that really kind of reinforce… Sometimes I don’t know if you’ve heard this sort of “autistic advantage” being in you know, in Silicon Valley, hire autistic people, because they’ll be great employees, you know, because they will not waste time talking to their colleagues or something. And that makes me really uncomfortable. Like, I think the idea that you would sort of instrumentalize this as a way to kind of helpthe profits of your of your company, or what have you. That’s a perverse way of thinking about the neurodiversity or neurodivergence, I guess.
Debra Thompson 14:10
Yeah. And I mean, I think I’m interested in two things. And based on what you just said, one is that you write in your work about the real identity politics at play within disability justice movements, and the ways in which, you know, almost reminds me about the debates over big tent feminism, you know, like, how can we, you know, if everyone’s a feminist then what is feminism really, you know, is there a core set of ideological principles and feminism that we cannot derogate from and still call it feminism? So on the one hand, you have these complicated identity politics at play that you that you write about, that involve not just you know, the treatment and origin of autism, but also the definition of who is either autistic or has autism and the difference between autism advocates and autistic activists, you know, so really, really feel like complicated field of identity politics on the one hand, and on the other hand, you have policymakers who kind of need concrete categories, classifications and definitions in order to make good policy. So what’s your way of thinking about, like these complexities and the ways in which they get translated into policy?
Michael Orsini 15:29
Yeah, that’s a great question. I don’t think I have a satisfactory answer. But I guess I would start with you know, and you can think about this in other contexts as well, think about it in the context of Indigenous folks as well, this, this idea that you would be able to speak with any authority about what it means to be autistic, what it means to be disabled, what it means to be Indigenous, is deeply, deeply problematic. Because, you know, in the autism world, people say, if you’ve met one autistic person, you’ve met one autistic person, right? It’s like, yes, of course. So the very real concerns that people expressed about how they identify, you know, autistic people, one famous person has sort of said, you’re either too autistic or not autistic enough, you know, this idea that if you’re really super eloquent, and speak in a powerful way, then you mustn’t be autistic, because autistic people don’t speak in that kind of way. You know, it’s kind of used to delegitimize. I think the answer, as far as policy people are concerned, is recognizing that multiplicity and understanding that if you can foreground disability and how you think about policies, and if you adopt a sort of disability lens, then you would understand that it’s important to think about some principles of disability justice, about the most impacted sort of need to be kind of leading those discussions. And be very conscious of the fact that, you know, the world of disability studies, or the field of disability studies has really been a white field for a long time. And, and so, those are some of the stakes that play out. But you know, in some areas, it’s just about a greater sensitivity to how ableism kind of structures are every day. And that’s just, you know, ableism is not just disability. Ableism is how certain bodies and minds are privileged in policymaking. How political debates favor a certain kind of engagement that shuts out some people with cognitive disabilities, like, that’s like a starting point, in many ways, right, is to sort of say, How can we create policies and programs or services that are grounded in a lived experience that is not uniform? But also, how do we sort of even challenge the way we understand policy engagement, policy involvement? I think there’s still a long way to go on that. And then the last thing you mentioned about white tent feminism is important, because I think a lot of folks who claim kind of progressive politic are really reluctant to sort of own their ableism, you know, and I’m starting, I just started some work now looking at ableism and social movements, and I’m looking at, like, the feminist movement and environmental movement and animal rights movements. And and it’s interesting to kind of see how there’s a kind of this internalized ableism, that just gets reproduced, you know. And that’s not reducible to kind of an identity politics. It’s something that’s more baked in, I guess, yeah, that makes sense.
Debra Thompson 19:02
Yeah, that absolutely makes sense. I’m wondering if you could give us a concrete example, maybe two concrete examples of this disability lens, like, give me an example of a policy area that is maybe doing this badly, you know, and one that is maybe trying to do it better. I have my own stories. You know, my, my father is elderly, and has had several strokes and cannot see well, and sometimes in trying to access banking or government services on the internet, just like the contrast, you know, in the icons and the background — like he can, he can’t see which icon he’s supposed to click on because his vision isn’t, you know, isn’t the same as somebody who’s 40 or 50. Yeah, so that’s, that’s just like a small example. But what’s your example of some of an area where this is being done while people are taking the disability lens seriously and one where we really should do some work?
Michael Orsini 20:05
Yeah, I mean, there’s so many. I think the field of education most more broadly — my closest vantage point is to sort of look at higher education. I see that as I, you know, and I’m not I’m not that kind of a person normally, but I see that as a kind of glass half full example, in that there is a greater recognition that there are different kinds of learning. There are different ways to learn there are different — and that the role of the university in this context is to do its best to promote accessibility and move away from a language of accommodation. Accommodation is kind of like we’ll tolerate you, because you’re paying your tuition and will offer you some sort of an accommodation on the basis of your disability. I think that has changed significantly. And I think that’s, in large part owing to student advocates, disabled students who have kind of really pushed universities in that regard. I think it needs to sort of engage a little bit more with those kinds of intersections, because I think racialized students experience disability in a really different way in the university. I’ve had students say to me that profs have said, I didn’t realize you were disabled, you don’t look disabled, and it’s, you know, so yeah, really, really cringey. So I think education is one where I see problems, but in many ways, lots of lots of, you know, I think evidence of real well meaning attempts to do things differently. As far as a poor example, or an example of where there’s, it’s limited, I think, you know, the sort of architecture, the social policy architecture around assistance for disabled people, I think across provinces is a complete and utter mess. You know, it’s not long ago, that we were dealing with the start of COVID, and the introduction of emergency benefits for folks and things like that. And disabled people were crumbling under a lot of those. And they were also asking questions about why we were still able to immediately like, just like, snap a finger, offer $2,000 a month to people who are dislocated from the labour market. But then, you know, disabled people have been experiencing all kinds of dislocation and receiving a pittance as far as assistance. So I think that for me is an example of where we have really not advanced and, you know, I only have some limited experience to with I do a little bit of around disability art. And I remember, a bunch of artists kind of saying, if we sell our work, they have to, it has to be taken from it clawed back from the meager money we receive on social assistance. So what does it do it kind of again, it promotes this idea that a disabled person can’t really be an artist. And if they paint and stuff, it’s just something they do to pass the time. So they don’t have any kind of dignity as artists and deserve to be paid, whatever for a painting. And, you know, it was just again, another example of how long have we known this, that folks who are receiving some form of disability insurance are earning very, very little, and dependent upon the benevolence of the state? The the last part of that is kind of, you were mentioning about your dad, but there are lots of disabled people who just need some support in their home — attendants or what have you. And even that has been really, really challenging where it was assumed that a disabled person could not make the decision about how to access particular care. But you know, there are some good examples of that changing, but again, it’s kind of a really paternalistic system that, we know better than you. And we’re willing about what you need, you know, as opposed to sort of what, you know, people like Barbara Arneil and other political theorists have talked about a notion of interdependence, like, moving toward a model of interdependence is really tough for a lot of us, even if it is kind of it’s the reality for lots of folks who might not be completely dependent on state support, but might need some of that from time to time.
Debra Thompson 25:06
Yeah, it reminds me a lot of the work of one of my favorite political scientists, who is Joe Soss. And he writes a lot about the paternalism of the welfare state, especially under neoliberalism. And we assumed that neoliberalism meant a smaller state. And yet, for so many people, not only does the state still loom large in our lives, but it is coercive, punitive, paternalistic, and it is heavily invested in making sure that we abide by standards of behaviour that are really, really quite restrictive, are really about determining who’s a good citizen and who’s a bad citizen.
Michael Orsini 25:52
Yeah, I had something to say. But go ahead,
Debra Thompson 25:54
I want to actually turn to a kind of a more concrete focus on on the welfare state and inequality, because you mentioned this, that the social policy architecture is is kind of incoherent. And in one of your pieces you write, “disability is a fundamental feature of the welfare state, and therefore welfare state politics,” and it’s true, you know, disability touches on or is encompassed in all aspects of the welfare state, like health care, education, various forms of care, work, income support, disability benefits. And you also mentioned in your work, that there are some challenges that disability poses to the welfare state. So one being this model of provision that centered on redistribution, and the expansion of this universal basket of goods and services that all people are supposed to be able to access in theory. And the second is the way that the welfare state conceives of recognizes and sometimes valorizes disability. And in this article, you’re, you’re talking about autism in particular. And I wanted you to talk a little bit more about these challenges. And I guess, like, what in your mind makes them so challenging?
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Michael Orsini 27:09
Yeah, I think I think, well, I guess I would, I would kind of start from this, this, what you were sort of saying earlier with regard to the paternalism of the welfare state, I think, what’s difficult to sort of untether or detach from disability in the welfare state, is the sense in which disabled people have equal, you know, rights to citizenship. You know, Michael Prince a long time ago, wrote this book, you know, really good book called Absent Citizens where, you know, the citizenship of disabled people is not presumed, right. It’s, it needs to sort of it almost needs to be defended. That there are particular entitlements that disabled people are owed. So I think the starting point for some of the difficulties around around this question of redistribution, or universal basket of goods is the sum of the presumptions about the humanity of disabled people. So if your personhood is kind of under threat, well, it’s not surprising that there are going to be questions about whether you are legitimately owed access to particular services or programs. I mean, the debate about medical assistance in dying right now, which just just, you know, unbelievable, really kind of puts this, I think, in sharp relief, where disabled people, they’re saying, you know, I can’t sort of survive on $1,200 a month. I think my life is worth living, I think I have a value, I think there’s quality, I have quality of life. Again, the thing that non-disabled people can’t get their head around. But the situation I find myself in sort of in a socio economic way financially means that I think the best option for me is to end my life. And people are people are kind of saying, well, no, that’s not really that’s not really happening, or that’s not really the case. Well, of course, it is happening, you know, so, from the perspective of if you take a sort of disability lens to medical assistance in dying, yes, it’s complex. It’s nuanced, in all kinds of ways. But at the root of it is this idea that some disabled lives are really not worth living. And a really good scholar, Kelly, Fritsch, she was a prophet at Carleton University has sort of written about sort of the neoliberalism and the governance of disabled life. And she talks about how under neoliberalism, it’s not that all disabled lives don’t matter. Some actually do matter. And that’s what’s really critical. Some lives are kind of lifted up. Some people are capacitated, like she says, and others are kind of relegated or to the periphery, right. So that’s how neoliberalism sort of works. And so it’s not like you were saying earlier, we talked about the contraction of the welfare state the retention of the welfare state, like good political science nerds. But actually, these things are sort of happening simultaneously. There’s a kind of expansion and there’s a contraction, but there’s an expansion of surveillance of people. You know, there’s the sort of disability con you hear about on the internet a lot like people who are faking their disability. This gets people really wild, like, how could you do that? How could you pretend to be disabled just for for the sake of, you know, like the welfare queen sort of debates, you know, how that idea that people are gaming the system?
Debra Thompson 30:43
Yeah, you can’t talk about the welfare state without talking about these ideas of deservedness and undeservedness. You know, they’re just baked into our conceptualization conceptualizations, of redistributed politics.
Michael Orsini 30:59
Absolutely. And I think the idea that they’re, you know, that folks are looking for or asking for particular access to a particular set of programs or services. That’s seen, you know, a colleague of mine has sort of said this, that, you know, in talking about the welfare state, it’s always like, when austerity sort of comes to town, everybody has to wait, you have to be patient. But the cuts, they come with a ferocity that is felt really deeply by people who, who depend upon certain services and programs, right. So that’s the cruelty of the system in some way. That it’s, it’s its presence is felt in a really significant way by folks. And then when people say, well, what about kind of increasing the minimum wage? What about increasing social assistance? Disability insurance? You have to be patient, right? You have to wait. Right? Anyway.
Debra Thompson 32:00
So we’re running out of time, but I just want to ask you two last questions. One is, what are you what are you working on these days? What are you thinking about?
Michael Orsini 32:08
Oh, yeah, I’ve just started a new project actually, called Disability and Movement. And I mentioned in a little bit earlier, it’s trying to kind of take seriously this idea that if ableism is something that moves through societies and systems, then if you want to study disability, you need to sort of look at social movements that are interested in forms of progressive politics. So you know, even all this sort of discourses of strength and overcoming and that kind of thing in social movements, we just take for granted, you know. So I’m trying to look at that kind of in the feminist movement, which kind of, you know, initially sort of really thought deeply about ableism, the environmental movement, which has gotten into a lot of trouble for its kind of ablest ways around even sort of debate about plastic straws. And the animal rights movement is a really fascinating and troubling one, because it the defense of animals has come at the expense of disabled people. And, and so there’s, there’s, there’s some really deep, deep, deep disagreements in those communities. So I guess the bottom line is sort of if you want to think about ableism, and social justice, and kind of the different kinds of political contestation, what happens when you centre things that we don’t really think about. And so ableism is the kind of the centerpiece of that.
Debra Thompson 33:49
Michael, that sounds amazing. I’m super, I can’t wait, I can’t wait to read it. And the last question is a question that we always end this podcast with. It’s called, I’m calling it Academic Dominos. And the question I have for you is, you know who else in your world, either in political science or the social sciences, or outside the social sciences, who’s doing the most interesting work? You know, what? Whose work? Are you really excited about? What have you read recently that excites you? Who’s doing cool stuff? Tell us.
Michael Orsini 34:21
Yeah, I think, you know, the trouble with me is that I kind of feel like political science is not where all the cool stuff is happening. So, but I would say…
Debra Thompson 34:30
We’re gonna revoke your membership card but that’s fine.
Michael Orsini 34:32
I think Kelly Fritsch, who’s a sociologist at Carleton University, I think is really doing cool stuff. Especially she just published a book, which we didn’t talk about much, but sort of on disability justice and incarceration. How can you think about incarceration without kind of a real explicit lens around disability. Folks like Laverne Jacobs, who is at the University of Windsor has been leading some international movement around sort of disability rights, but also as a legal scholar taking seriously issues around critical race. But then there are folks, you know, Nirmala Ervelles in the US, I think, is one of the most important people working on race and disability. And I take a lot from her. And then on the education, I think somebody named Gillian Parekh, who’s a professor at York University is one of the only people in Canada right now, taking seriously the concerns and this explicit interplay of race and disability and educational outcomes that are producing horrible, horrible outcomes for kids, black kids and racialized kids in Ontario, specifically. So sometimes people talk about that in more theoretical ways. But she’s kind of doing research really on the ground. But there are so many people! There are lots of folks who are doing great work and it’s clear that it’s not happening only in certain political science spaces. It’s happening in other places. But it’s good to see that work kind of emerging and not sort of being kind of like, hey, what about me? Can I can I have a seat at the table? I think it’s more explicitly acknowledged right now.
Debra Thompson 36:32
Amazing. Well, Michael, thank you so much for being on this podcast. It’s always, always a pleasure to talk to you and I’m so grateful for your time.
Michael Orsini 36:41
Thank you. I really, really appreciate the time, Deborah.
Debra Thompson 36:44
Thanks so much for tuning in to inequality the new series from the IRPP policy options podcasts, we explore many of the facets of inequality in Canada, through in depth conversations with experts from across the country. This show has been a labor of love with research assistance by Juliane Vandal, production assistance by Nessi Altaras and Ricardo Montrose, and audio by Jackie Gallant. If you like what you heard, and you want to know more about the work being done by the Institute for Research on Public Policy, head over to irpp.org. And if you really, really like what you heard, leave us a review on whatever platform you’ve been listening on. Or share your feedback with us on Twitter using the handles @IRPP or at @debthompsonphd. I’ll be back next week for another episode of In/Equality. I’m Deb Thompson, and this is not my day job. But thanks again for listening.