Podcast

Interview Date | April 9, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit.

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into plucky music break]

NANCY: My dearest friends, where do people with disabilities belong? Where do we fit? These days, it’s not all that clear. Often, we have to make the case for being here.

So, this is particularly important in this time of COVID-19 and how it impacts disabled people. When I first became an academic, I was chosen along with 13 other disabled academics from all over the world, to look at disability in the time of the Nazi period, T4 and all that stuff. That was about, oh, 17 years ago, now, 16 years ago. We went around to all the killing sites for people with disabilities, and with all of the medical assistance in dying and now the rationing of medical care, it echoed very strongly as to what happened to disabled people during the Nazi period. And it struck me that we were only two weeks into the sort of physical distancing, social distancing, and already there were stories in the media, particularly the print media, around who are people that are disposable. And disabled people were right there. And it really struck me because we are the world’s largest minority, 1.3 billion people, but we get written off really quickly. And it just strikes me.

My name is Nancy Hansen. I’m the Director of the Interdisciplinary Master’s program in Disability Studies at the University of Manitoba in Winnipeg, Canada. I’ve had a disability my entire life, a mobility disability, and I’m a proud, disabled person. And I wouldn’t have it any other way.

CHRIS: Mmhmm, mmhmm.

JILL: I agree.

NANCY: It’s exciting to see what’s happening right now in the midst of this really bizarre space we find ourselves in. It’s really, like things are really taking off in the disability cultural community.

CHRIS: Yeah.

NANCY: And people are starting to think about things they’ve never thought about before, and some of those things are quite uncomfortable. So, I’m very comfortable with people being [laughing] uncomfortable!

CHRIS: Yeah! We sometimes talk about that, too, like the need for discomfort. I mean, certainly the work that we do is always what we call sticky. We want it to stick with people. And part of that means that when they come to a gallery of ours or an event of ours, that they will interact with things that are not everyday.

[plucky music break]

NANCY: By trade, I’m a human geographer, right? So, I’m always looking at space and place and how disabled space is often tenuous and tentative and how we can move one moment from being a society that’s supposed to be inclusive and respecting diversity and valuing it to, OK, things are a bit difficult now. So, who can we ditch first? I’m being somewhat facetious, but not really. And it sort of hits me where I live, literally. So, I just think that we have to get more, really more comfortable with disability and recognize that disability is just a natural variation in the human condition. It’s not better or worse. It just is. And I just wish the general population could become more comfortable with disability and difference of any sort. Because nobody’s just one thing, right? We have to get away from siloing and sort of look at the intersectionality that we’re all part of. I’m not just one thing. I’m a whole bunch of different interesting things, as is everybody. And I think that’s where we are. And we have to realize that disability is just part of that continuum.

CHRIS: You know, the eugenics research that you’ve done and the work that you’ve done with that Nazi history, it is interesting to hear you say that those things were coming up in your mind. I wonder if you could dive into that discomfort just a little bit more. And I’m just curious about what more we could say about that to make people understand that point that you’re making.

NANCY: I think not a lot of people know about disability history to start with. I mean, I think people aren’t aware of the eugenics history in North America and in Europe that was all very recent. Like if you wanna get right down to it, there were laws on the books in the 1970s that sort of kept disabled people out of public space that could be utilized, right? In my own lifetime, there was no access to transportation. There was no access to education, housing, employment, all that stuff. But differential treatment on the basis of disability has been so naturalized and so regularized that people don’t really question as to what’s going on. And when people do things differently, like basic things like going to the toilet and eating, people think there’s only one way of doing that! And disability brings creativity into the mix. And rather than being fascinated by that difference, the general public is really scared of anything that’s different. And not just disability, but anything that’s different. When times are tough, people tend to fixate on what is unknown and what is not understood. There’s a lack of creativity. So, I just wish that society in general could embrace difference as something exciting to be explored rather than shunned.

JILL: Right. So, when you have disability within the medical context and a history of medicalizing the disabled experience and trying to fix people and the fear associated with it, and we have this global pandemic, which just puts it right in those spaces, what do we do with that?

NANCY: Well, I think at the university where I work, the University of Manitoba, they do have a very small element in the beginning of their medical school curriculum where they look at disability and independent living. Granted, it’s very small, but it’s one of the few places in medicine that people are exposed to disability from, you know, being a natural part of society rather than fix, repair, or eliminate. I think it’s very important to have the medical community involved because let’s face it. We’ll need medical interventions at some point. You need to be comfortable with disability. You need to be aware that there’s more than one type of physicality or sensory or mental approach to the world. And it’s not necessarily a bad thing. They’re just different. And working in partnership and valued partnership with medical professionals or with healthcare professionals so that they’re more comfortable in dealing with non-conformist bodies, shall we say, in however that non-conformity manifests itself, I think it’s really important. I always find it interesting that when you go into a medical setting, even though in the larger population, disability is very highly medicalized, but when you go to the most medical, hyper-medicalized environments, when disability shows up, it’s always a surprise, right? Like they’re some of the most inaccessible spaces I’ve ever been in, are medical spaces, right?

CHRIS: And they’re often so excited to have us there.

NANCY: Oh, yeah!

CHRIS: If I could just share a story. When I was in graduate school, I had wisdom teeth issues, and I had to get them out. And my mouth doesn’t open very wide. And so, we were going back and forth with dentists. And we were at the University of Iowa where they have this huge dental school. And I went in for a regular visit. And there were like 20 people that came into the room, and they’re all looking at my mouth and leaning me back. Oh, we might, well, if you dislocated the jaw and all this. I was like, wow! I am like a specimen. This is really weird, right? And so, yeah, I think it’s funny that you said medical institutions, they’re surprised to see us. But then once that surprise is over, they’re just super excited, because they can, wow. This is a new subject, you know. And that that’s not comforting [laughs] at all.

NANCY: We’re often crimps on parade, right? Which I find bizarre because statistically, I mean, in Canada right now, we’re about a little bit less than 1 in 4 of the population. And it’s kind of disconcerting, shall we say, that the medical healthcare professionals are so woefully uninformed around disability issues. And it’s really weird when you have to make your medical professional comfortable with your body before you can get down to business, right?

And can I talk about a really positive experience I’ve had lately? I’m going to an athletic therapist, or I was going to an athletic therapist, to work on some tightness issues around my cerebral palsy. And it’s been really cool because she hasn’t had that deer in the headlights look or what do I do with your body? None of that. It’s like, OK, this is what’s going on here. What about if we try this? And we’re really two partners working together. She respects what I know about my body, and I value what she knows about how the body works. Rather than talking about, “Well, this doesn’t work,” She’s going, “Well, this is why this works the way it does.” And there’s no value judgment or lack of value placed on my body. It’s just working with the body I have. And she values my body, which is really exciting, right? And she’s actually giving me stuff that I can do that’s actually working. It’s great that we can do this stuff, and she doesn’t feel that I have a defective body, number one, and something that she doesn’t know what to do with, number two. Which is really a refreshing change. And at my age and stage in life, it’s taken a long time to meet somebody with that kind of openness around disability. And she is absolutely floored that I’ve had my interactions with the medical community have been few and far between anyway. But she’s absolutely floored that I’ve had so many, shall we say, less than positive experiences dealing with the medical community. But this has been really positive. Gives me hope for the discipline that there are pockets of awareness out there.

JILL: That’s great. I’m so glad that you shared that. I can’t help, on the other hand, think, OK, now we’re in crisis mode. And there’s concerns about enough equipment, and people are probably, I’m imagining, feeling quite stressed in the hospitals and the medical facilities. So, I’m just concerned. I guess bottom line is I’m concerned that that care that was necessary with the provider that you were just talking about is not happening in the spaces right now.

NANCY: Well, I share your concern. Not necessarily in that instance, but if one has to go to a hospital setting, for example, I would be, literally I’d be really nervous at the moment because I know what the Hippocratic Oath is supposed to be. But given the lack of exposure most healthcare professionals have had with real disabled people as opposed to textbooks or people in crisis, right? Oftentimes when medical professionals see disabled people, they see them in crisis, right? And they assume that their life is like that all the time. And so, they extrapolate as to quality of life, whatever that means. That would concern me, that things that were readily available with ease before are now sort of rationed because there’s this sort of unarticulated expectation in a lot of instances that disabled people are taking up non-disabled spaces, that we have to literally make the case for being there most of the time. When your value, when your worthiness is judged on such a limited scale, once you get beyond the tick box, what’s required? Like we value standing over sitting. We value walking over wheeling. We value speaking as opposed to sign language or whatever. You know, there are certain other ways of communicating that are seen as having more social value or more readily accepted. And when people are working from a point of fear and ignorance, right, that does not bode well for anybody that doesn’t exactly fit the status quo, for non-conformity in any venue.

[plucky music break]

I have been working with Peace and Conflict Studies, who’s also inter-disciplinary at our university. And then we got involved with the Northern Ireland situation and 20 years since the Peace Accord was signed. And a colleague of mine, Robert Mizzi, who’s interested in LGBTQ issues, and the other gentleman, Sean Byrne, whose from Peace and Conflict, we got looking at the Peace Accord and how those two population groups were singled out as having rights in the Peace Accord. And we wanted to look at how those two marginalized groups were finding how this played out on the ground, right, how it was written in the Peace Accord and how it was actually being applied. So, and what we found really strange was that other people couldn’t figure out why we would be looking at these two groups together. And we’ve always thought it’s not a contest. If one marginalized group is being discriminated against, we all lose, right? It’s not a contest as to who’s being more discriminated against. Granted, some issues come to the fore at certain times with greater intensity, depending on what you’re dealing with. So, first of all, we had to convince funders that this was viable, that intersectionality was a good thing.

But we went over to Belfast and Northern Ireland four years ago because Sean is originally from Northern Ireland, and Robert had done work there as well and other conflict areas. So, that was the taster four years ago, to go and talk to various groups. And then we were supposed to go again in June, but that’s not gonna happen. So, we’re looking at how conflict and post-conflict and migration is impacted on when one is in one or more marginalized groups, right? And we can’t figure out why people think this is groundbreaking stuff because we just do it naturally. And it’s just interesting how we have to convince other people that this is OK to do this. Academia talks about being progressive, but talking and being are sometimes very different things. Yeah.

CHRIS: Well, isn’t that interesting, though, this idea that what you do naturally, people are just blown away by. And I think there’s a lot of that feeling happening right now, and we’re hoping that it doesn’t get lost, that disabled people live like this a lot. That we are online and that our culture has really grown online. And it’s been a digital movement. It’s been a digital gathering spot for us. And so, I’m hopeful that that will continue to be seen as something to be impressed by. But, you know, there’s fear from some of our respondees that everybody will sorta take on our modality and then just leave us behind, right?

NANCY: We’re groundbreakers. We’re groundbreakers, right? Because I really think that this is gonna change, like working remotely is gonna change the way everybody does work, right? And I think, maybe, I’m hoping that it will further naturalize or regularize disabled people working in different ways. As I said before, we have to get more creative about the way we do things, and we have to start blowing our horns about, yes, we are the vanguard of how this was done. We’ve gotten to be creative out of necessity, right? And it’s just the larger population has that same necessity thrust upon it now. So, it’s taking on a whole new significance because the larger population is dealing with it now. So, it’s OK now to deal with it. Whereas before, for us before, it was “special,” quote-unquote. And now we’re trying to regularize the specialness of this whole thing, if that makes sense, so that non-disabled people can get comfortable with it too, right? Whereas we’ve had to be creative in these ways for decades now.

JILL: We have to reflect on why we feel and act a certain way. And the more people that we can get to reflect, the better. So, if there’s a way that we can challenge and poke a little bit in this period of uncertainty for people, maybe there wouldn’t be such a need for justification.

NANCY: Exactly. disabled people too have to sort of engage with non-disabled allies. ‘Cause the reality is, still as unfair as it is, a non-disabled person’s perspective is much more highly-valued still than as a disabled person, because we’re often dismissed as, oh, we’re radicals and activists, or we’re crips with a chip on our shoulder, right? And it’s not that at all. So, the more allies we can engage too is really important. We’re too busy trying to survive on a day-to-day basis, especially now. But the more we can get individuals in the mainstream or the larger population to recognize that this is an issue, it’s gonna work better for everybody, right?

JILL: And that’s why we really forward the opinion of disability as a cultural identity, as a minority identity. Because we believe that the more we can do that, the more you can’t ignore a whole group of people who is saying, “We belong here just like anybody else.”

NANCY: Exactly. And I think the mainstream media has been making some small strides in that area. Like when you have disabled people, actual disabled people having regular parts in dramas and comedies, and they’re not necessarily playing the role of disabled people, they’re just playing a role, I mean, that is really good. There’s a long way to go. And then you have backsliding when you have non-disabled actors playing disabled parts, which I think is completely inexcusable. Somebody who’s from a racialized minority would not be accepted. So, I think this is kinda like the last frontier. And for years now, the BBC has had shows like The Last Leg or podcasts like Ouch! that are done by disabled people, but it has an appeal to broader audiences. And there’s been disabled correspondents in Britain for years. Those are just the ones I’m aware of. I’m sure there’s others. But the more we can regularize disability coming in through whatever media you can, the less discomfort there’s going to be. You can sort of change people’s minds by, or shift people’s opinions by, stealth, right? You don’t necessarily have to tell them that you’re doing it. But the end result, it will happen.

And I’m a geographer who does history, right? But I think it’s really important to go back and look at those historical figures and recognize that people like Thomas Edison and Frida Kahlo and all those historic figures, that we have to write disability into that narrative because it’s there. A lot of disability issues have been subject to cultural erasure. So, we have to put disability back into the picture and go back to those bits of the historical narrative and put it back in. Because I think for the longest time, there was an expectation if you talked about disability as relating to people’s lives, it would diminish their accomplishment. No, no, no. I think it’s a way of, yes, disability’s always been here. And no, we’re not taking up space. We’ve just always been here. So, if we can sort of regularize that through historical narratives and including disability in whatever you do as part of the cultural narrative, whatever that is, that’s gonna help stuff, I think.

JILL: You’re talking about disability pride and identity.

NANCY: Yeah!

[plucky music break]

CHRIS: I’m wondering, Nancy, if you could talk a little bit more about how’s Canada been in terms of the news, especially? How has the media been in your neck of the woods?

NANCY: I sent the local media outlet here, the Canadian Broadcasting Corporation, a piece from The Metro in the U.K. And then they got back to me and said, “Could you write something with regard to what’s happening in Canada?” So, I did. For Canada, we have socialized medicine. And so, I think that’s beneficial. Our governments then, like our Prime Minister, gives a news conference every day at 11:00 Eastern time and talks about policies and programs that are coming up. And there’s not been a lot of talk about disability thus far, but there’s been a lot of talk around protecting vulnerable populations. And usually, the Disabled are kind of lumped into that whole group. And also providing more funding for agencies that deal with the older population, too. So, I mean, I think there’s a more consistent discussion around those two groups, not disability specifically, but it’s definitely in there. And I have to say, this is not a paid political announcement or a thing, but I’m happy with what the government’s been doing to this point because it’s constantly changing on a daily basis. So, they’re trying to keep up with things as much as they can. And I think by and large, they’re doing a pretty good job.

CHRIS: How does caregiving work in Canada? Is that also covered by the federal system and the government program?

NANCY: No, it’s province by province. So, every province has a different way of dealing with it. In Manitoba, for example, you can access it through the provincial government. And I know their resources are stretched at the moment. They were stretched before, but they’re even more stretched now. And you can also engage things, resources privately, too. Luckily, I’m working, so I can do that. But a lot of disabled people can’t, so. But I would say it varies from jurisdiction to jurisdiction. And even within provinces, depending on how things are meted out in various municipalities, it varies. But so far in Manitoba anyway, things are OK.

CHRIS: Do you have thoughts, Nancy, about the younger generation of activists and advocates with disabilities that you’ve been watching? Or what’s your hope is? Do you have some hope in that generation?

NANCY: It’s playing out in various ways, in various ways and at certain times in different venues. What I’m finding interesting is, yes, there’s a lot of young disability activists coming up, but also, there’s another element too. A lot of younger disabled people think that everything’s been done, right, and that they don’t really have to advocate for stuff anymore or as much. And I think that there has to be an understanding that we have to keep advocating for things. Because as we can see right now, our positioning and placement is very tentative and still, like I said, a surprise when we show up in a lot of places. I think that there has to be a lot more regularizing disability activism and disability pride as part of the social continuum and recognizing that when you’re talking about other elements of activism, whatever that is, disability activism is naturally a part of that process. And that disabled young adults have to get comfortable with their own skin too, and recognize it’s OK to talk about it and be proud of who you are and not necessarily having to sort of pass. Because a lot of disability, as you know, is invisible, right? I come equipped with hardware, so there’s no surprise.

And I’m not a young person, but I think that a lot of young people who have invisible disabilities have to be sort of reassured that it’s OK, and when you’re getting comfortable in your own skin as a young adult, that disability is part of what’s in there, too. And just, you know, celebrate it and explain and talk about accommodation. And talk about how disability is creative, you know, I just think. And I recognize that a lot of disability is acquired, too. And if we can sort of naturalize the presence of disability, that will help people who acquire a disability to become more comfortable with it too, or make the transition maybe a little bit less traumatic than it is right now.

CHRIS: These sorts of events, even though it’s unprecedented, we can look back and say there’s been moments in human history where we have learned and we have moved forward. But there are also moments where we’ve learned and backslided, right?

NANCY: Mmhmm.

CHRIS: And so, it’s interesting to think about where we’re gonna end up after this.

NANCY: Yeah. I mean, when you think about it, polio epidemics aren’t that far out of the picture. Yet they’re beyond a lot of people’s life memory because it’s out of their life span. So therefore, it doesn’t exist, right? But it’s not all that long ago. 65 years is not that long ago in the course of human history, but we have very short memory spans, so. And when you live in a culture that changes moment by moment now with social media, it’s hard to get people to recognize what’s going on when things are changing moment by moment by moment. And there’s a lot of overload too, media overload. And just because it’s out there doesn’t mean that it’s any good. It means it’s accessible, but it doesn’t mean it’s any good.

Even today, there’s so many myths and misconceptions around what disability is and more importantly, what it is not, right? That’s why what you both are doing is so, so important. It’s a way of reaching the community, too, particularly at this time when so many of us are isolated. And as a community, we’re given recognition. We’re given value. And the worthiness is here in what we’re doing, right? And what you’re doing, specifically, I think it’s so important.

[plucky music break]

JILL: We like to ask ourselves who’s missing? Whose voices are missing? Who should we be talking to that maybe we haven’t already thought about as part of these podcasts?

NANCY: I think would be great to talk to people like People First. It’s an organization led by people with intellectual disabilities. And also mental health advocates, Phoenix Rising, for example. Particularly right now, I think it’s incredibly important to talk about mental health issues and issues around anxiety because of the isolation factor and because we’re being chronically bombarded by one subject area, and it seems to be escalating in the media all the time. There’s not a lot of content analysis, and so I think that there has to be some real thought into what’s being said around these issues. And I think a lot of that’s missing. Rather than just filling airtime, the media has to realize that what they say has a real impact on people, particularly people who are dealing with mental health issues right now. ‘Cause I think things are particularly intense.

CHRIS: Yeah, absolutely. I think we’re hearing that quite a bit, and feeling it personally. Yeah.

NANCY: Definitely. Again, I’ll reiterate, that’s why what you guys are doing is so important. So, so important.

CHRIS: Thank you so much. And are there things, Nancy, that you’d like to cover or anything that you’d like to make sure that we talk about or anything else?

NANCY: Even though I’m not an artist and I have no talent in that regard whatsoever, I think it’s so, so affirming. And so, it just it gives me such a sense of pride to be part of the community. And things like in the media right now, I think a must see is Netflix’s Crip Camp. It’s amazing, phenomenal, fantastic. No, I don’t have any commercial interest in it whatsoever! But I sat in front of my television and cried because I was just so proud to be part of that constituency, right? And I think it’s really important that wherever they are throughout the world, that people who were the groundbreakers in the whole disability rights movement get their stories out there before they’re gone. I think it’s it’s really important. I know several people that are writing journals at the moment about their experiences in COVID. I think that all this stuff has to be recorded. But the art, in whatever form, is so empowering. And so, it’s reassuring in a lot of ways that we are valued and that we are making really important contributions. And that just reiterates the pride factor over and over again. Particularly, art and culture is phenomenal because it gets to the very core of humanity, and everybody can relate to that, disabled, non-disabled. I think it’s really important. Thank you for this. It’s been amazing for me.

CHRIS: Oh.

JILL: Oh, it’s so good.

CHRIS: So thrilled to meet you.

NANCY: Thank you.

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music: “Algo Rhythm Natural” by Podington Bear. (Source: freemusicarchive.org. Licensed under an Attribution-NonCommerical 3.0 International License.)