Interview Date | May 11, 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 chill lounge music with a light breeze blowing that plays until the long pause]
CHRIS: Hi, man!!!
AIMI: Hi. How’s it going?
CHRIS: Oh, good! How are you? It’s great to see your face.
AIMI: Yeah, likewise.
CHRIS: Aw. Are you OK? Everything OK?
AIMI: Yeah, I’m good. How are you?
CHRIS: Yeah, I think we’re good. I mean, as good as we can be. I mean we are good, but it’s weird to be good, you know? I don’t know.
AIMI: Yeah, totally.
CHRIS: We’re busy. We are so busy.
[long pause]
JILL: I’m muted.
CHRIS: You’re muted.
JILL: I just love your garden!
AIMI: Oh, thank you.
CHRIS: It is so good! [laughs]
JILL: It’s like, yes! More photos! More photos!
AIMI: Yeah. It’s definitely like one of the sole sources of joy in my life right now. So, trying to be in it as much as possible.
JILL: You’ve been a gardener for years?
AIMI: Mmhmm. Yeah, I grew up like all of my grandparents and stuff are really into gardening and farming and stuff. So, I come from people who are basically plants, and I am basically a plant, yeah.
CHRIS: [laughs]
JILL: I love it.
CHRIS: Well, thanks for spending some time with us. It’s a weird time for disabled people. And so, that’s kind of what we wanna talk about, you know?
AIMI: Mm.
[chill lounge music break with a light breeze blowing]
AIMI: My name is Aimi Hamraie. I live in Nashville, Tennessee, and I’m an Associate Professor at Vanderbilt University. I also direct the Critical Design Lab, which is a collaborative of disabled designers and Design Studies scholars all over the world now. And I host a podcast called Contra*. I’m also a permaculture designer, and I do some fashion design as well.
Right now, most of what I’m doing in this time of COVID-19 is mutual aid organizing. So, with a couple other people, I organize the mutual aid network in my city. It’s focused on not just kind of getting resources to people, but also on building lasting relationships and figuring out what solidarity means between different social movements. And we’ve been managing to do it with disability Justice at the center. So, that’s an exciting affordance of this time. It’s really kind of drawing on various forms of knowledge and skill sets that I and other disabled people in our network have to do really what we always do, which is to show up for each other. So, that’s been what my last few months have been about.
CHRIS: I’d love to hear more about that. So, in terms of keeping disability Justice at the center, can you give us a story or an illustration of what that looks like?
AIMI: Sure. So, about two months ago, a bunch of people in town realized that we were all doing our own mutual aid projects kind of separately. And the “we” there included individual people building mutual aid pods with their neighborhoods or with their families. It also included established networks. So, I’m part of the Nashville disability Justice Collective. We have mutual aid support system within our collective, where we check in with each other, and we offer information and advice and resources and stuff as we have them and we need them. But then also different social justice, transformative justice collaborations were emerging because there had just been a tornado, and the tornado destroyed parts of this city that were rapidly gentrifying, but also parts of the city where still a lot of poor people and people of color lived. And so, there were sort of these overlapping mutual aid networks and systems that existed basically like a week before we all went into quarantine. And through our broader mutual aid network, we’ve been sort of collaborating on a number of different things.
So, one of the things that we do is we have these one-on-one pairings where people within the group also virtually meet up with other people who they may not know as well. And they figure out how they can connect and build solidarity with each other, either on an individual basis or to connect the groups that they’re part of. For me, disability Justice has been a big part of that kind of interaction because a lot of the time when I, as a disabled person, get to explain accessibility and access intimacy and mutual aid and those kinds of concepts to someone else. We also do political education. So, about half of our group is focused on political education, and the other half works on the infrastructure of mutual aid, like coordinating resources. And political education so far has taken the form of like reading the disability Justice principles together and talking about how disability Justice can challenge some of our assumptions about what it means to show up for each other and to build relationships and what good relationships may look like that don’t kind of privilege non-disabled norms of interaction and presence and things like that. Pretty much everything about participating in virtual space we’ve been able to be like, “Hey, this is a thing from disability culture. We know how to do it. Let us just do this and show you how to do it.”
Also in our network, it was first actually established and worked on by disabled people who are part of the disability Justice Collective. So, a lot of the infrastructure of resource coordination was also developed by disabled people and then non-disabled people, so it became part of it. So, a lot of that has been kind of infused throughout, and it’s still a work in progress. But it’s really amazing because there are all these people showing up who don’t usually participate in activism. They just wanna do something. They wanna feel like they’re contributing somehow to their community right now. And then they also get to learn about anti-capitalism and abolition and all these sorts of things. That’s the shape it’s taking right now.
[chill lounge music break with a light breeze blowing]
JILL: It’s interesting that you started this with talking about the tornado, and now we’re in COVID-19 pandemic space. And how is the response similar, different, connected? Just curious.
AIMI: Such a great question. So, it’s been really challenging because when a natural disaster happens, people’s tendency and desire—which is a good desire—is to come together and help with cleanup and cook food and serve it for people who don’t have access to power or who’ve lost their homes and stuff. And that’s what we were all doing at the time that we were told that we had to go into isolation. And so, there are still some people doing it. There are still cleanup crews and especially construction workers really putting their lives on the line to help people have places to live again and rebuild roofs and stuff like that. But it created a really weird dynamic where suddenly, we went from going around in the neighborhood. It looks like a war zone. Buildings have fallen down. And then having to be inside.
And now that it’s possible to go out, I go to the pharmacy and go through the drive-through and see what the state of things still is, there are entire buildings that are gone that used to be there before. So, it’s a weird thing in the same way that it’s really weird that many of us are in our homes and not directly seeing all the people who are in Intensive Care Units and unable to breathe and dying. But we know that there’s this horrible, massive-scale devastation out there. And it’s kind of just like holding all of that intention together and still trying to coordinate people getting what they need just from very separate spaces. Which is the thing that I’ve been doing for a long time and other people have been doing for a long time if you’re not someone who can always leave your house, so.
CHRIS: Well, and that’s connected in a lot of ways to the mapping, your access mapping stuff too, right? I imagine that there’s some crossover. Can you talk a little bit about the Mapping Access project that is connected to Contra* and to some of the other things that you do?
AIMI: Sure, yeah. So, Mapping Access is a participatory data collection and data visualization project that the Critical Design Lab works on. And it takes a practice that’s pretty common in disability activism and disability community, which is accessibility auditing and mapping, and it uses those things critically to think about the question of how you get people who don’t usually think about accessibility to think about it and to notice. It came out of my teaching. So, I’d noticed that whenever I would assign accessibility audits as a classroom exercise, the thing that seemed to have the most impact wasn’t that students went and saw that a building was inaccessible, just on its own. It was that every semester from then on, they would come back to my office hours, and they would say, “You cannot believe this thing that I found!” And they would send me pictures. And for some reason, they thought I had some control over this.
And so, at some point, also because I’m a geographer, and so I go to geography conferences and hang out with people who do really radical mapping projects. And I started to think, what would it mean to collect all this data instead of just using it as a classroom exercise? And to use it for certain strategic institutional goals. So, if one goal is to counter the narrative that everything is ADA compliant on a campus or in a city, then a way to address that strategically and in a way that also has an impact and comes with the requisite evidence is to present data. And another way is to teach the people who are in denial about the lack of access to notice and to read the built environment.
So, we do these events called map-a-thons, where a bunch of people get together, and they do accessibility audits. And they also learn about disability culture and art and community and things like that in the process. And then we create maps that are usually for use by particular communities. So, we have ones that, you know, campus maps for specific campuses. We’ve done ones for activist groups, surveying the spaces where they tend to meet that are like donated spaces, ad hoc spaces, and other kinds of landscapes and things like that. And actually, in this time of social isolation, it’s been really funny because lots of people have been reaching out to me about this project. I’m like, I don’t know. We’re not in public space anymore. I don’t really, like we have to think about mapping in public space a little bit differently because we don’t know when we’ll be able to go back into public space. But access also means new and different things that are a little bit more ephemeral sometimes. And I’ve been trying to think about how to spacialize them.
So, for example, today I had to leave my house to go do a couple things, including going to the pharmacy. And I was really making note of where people wear masks and where they don’t. And I was shocked that the pharmacist was wearing a mask, but not over their face. It was kind of like around their neck. And I just noted that as this is sort of like when there’s compliance, like checklist style accessibility. He had a mask, but he wasn’t doing it the right way that would prevent other people from getting sick if he had COVID. And so, there may be ways to sort of collect data and notice those things. But just like a lot of public spaces, the data itself is very ephemeral. Two seconds later, that person could’ve put their mask on or taken it off completely. And so, how meaningful it is may vary.
JILL: That’s actually really intriguing to think about. You’re not talking about the physical structures anymore. You’re talking about the people who are making the decisions within those structures. That’s a behavioral mapping, decision making, and maybe a political one as well.
AIMI: Yeah, definitely. I mean, one thing that we are learning is, in this moment, we are all called upon to create access, basically, to life for each other, and that is a very behavioral thing. And there are a lot of people who are protesting having to do that as people do, which is kind of horrifying. And then the question arises, when we shift from structural accessibility to behavioral or attitudinal accessibility is like, how do you document that, and what are the mechanisms for accountability?
I noticed that my neighborhood farmer’s market is opening tomorrow. And I was really shocked to see that this was happening because even though they said that masks were required, I don’t know how they’re going to enforce that. And I’m someone who has chemical sensitivities and chemical injury. And one of the things I often need when I’m in a space is for it to be fragrance-free, but there’s almost no way to enforce that. So, in a similar way, I don’t know. At a farmer’s market that’s just a wide open space if they’re gonna have like a bouncer or someone who’s like, “Nope, you’re not wearing a mask.” Or, “You’re not wearing the right kind of mask, so you have to go back to your car.” I have a feeling that’s not gonna happen and that people are gonna get sick because of it.
JILL: And there’s a bit of a social fear for some people that if you do challenge someone who’s not wearing a mask, you don’t know what the reaction’s going to be from that person.
AIMI: Yeah. You know, I live in Tennessee where there’s, the protests against quarantine also are about open carrying and public and things like that. And so, you never know. And power and violence are not distributed in a way that would make everybody feel safe.
CHRIS: How are you reacting to some of those protests? Just to commiserate with you, you know, because we’re in Michigan, we definitely have felt those two forces: the force of the state saying, “Slow down. We need to be careful,” And disability activists like ourselves sort of saying, “Guys, slow down. You know, we need to take our time.” But then having a complete other side of the coin, which is people who are either underemployed or unemployed, who are feeling like, I gotta get back. I gotta get back to real life. But also people who are just like, you know, they just don’t want people to tell them what to do. So, we see it here. And the guns, the guns element, too, is here as well. I mean, how are you making sense of all this? I mean, in the larger, bigger questions of this pandemic, I mean, how are you making sense of it?
AIMI: Well, first, I’m really sorry that you’re also experiencing this there, ‘cause I think sometimes there’s an impression that this is just like a Southern thing. And it’s definitely there are armed militias and stuff like that everywhere. And it sucks. It’s really awful. The thing I keep thinking about throughout all of this is, some of us are really putting our energy into building communities that show up for each other, and some people are putting their energy into their ability to just do whatever they want, even if it hurts other people. And on a fundamental level, it’s just like a moral question. And I don’t know how to convince people who don’t think that doing things so that other people may live is a good thing. But I have noticed some things that have been interesting and frightening to me in the ways that they connect to historical forms of ableism and eugenics, for example.
So, there was a protester here downtown who was holding a sign that kind of went viral that said, “Sacrifice the weak for the economy” or something like that. I can’t remember the exact wording. It definitely said, “Sacrifice the weak.” And that sort of ideology of blatant expendability that is then enforced by people making public displays of the violence that they are capable of. We knew that fascism was alive in this country. People were in denial about the continued existence of eugenics. But it is still very much alive and a calculation. And we’re seeing it come out in ways that are in some ways totally expected. I’m not that surprised that not everyone’s like, OK, time to shift to an anti-capitalist economy. People are really doubling down on this.
And they’re also coming at it from a perspective of scarcity that is so normalized, but it doesn’t have to be that way. If we think about the corporations that are profiting and the banks that are profiting from forms of economic redistribution that are not reaching workers, that is a choice that someone made. It was not a natural occurrence. And those bailouts could’ve happened in a different way. I think the reason why bailouts were not given to workers is that then they would’ve had a reason not to show up to work for the benefit of their bosses and corporations. And so, there are things that are happening that are in that kind of very traditional Marxist sense that are preventing people who have lost their jobs from understanding what to do with their alienation from their labor.
I’m really lucky and happy to live in a place that has really strong workers’ movements and movements for undocumented workers that are extremely organized and powerful movements also for white working-class people that are organizing under explicit anti-racist agendas because we have to challenge those narratives. The types of narratives that we get from corporations in the state are always about blaming certain people for “draining the system,” quote-unquote. Whereas the entities that are draining the system are like fossil fuel corporations and airlines and various industrial manufacturing corporations and stuff like that. So, what I take from it, I guess, is just this idea that we have to keep our analysis really sharp and point all of these things out at every opportunity. Because otherwise, that sort of move of we need to sacrifice the weak for the good of the whole, it comes to appear as commonsense. And it’s not commonsense. It’s like a manufactured lie that is told to control people and to get them to behave in certain ways.
[chill lounge music break with a light breeze blowing]
JILL: That’s really heavy. [nervous chuckle] Right? You processed, you think, you take everything in, and you do everything you can to support people and communities. So, how are you managing through this?
AIMI: So, I am doing the things that I’ve been doing for most of my life, which is to do self-care. And for me, that looks like connecting with plants and going outside sometimes, disconnecting from the Internet as much as I can, not getting too caught up in social media, which can be hard sometimes. And then also just making sure to stay connected to people. Even if my capacity for that is somehow diminished, to just connect in little ways. Because maintaining relationships, I think, is the way that we’re gonna survive this. And that’s really something that disability culture and community has taught me. And that those relationships don’t always have to look the way that we’re accustomed to them being. But even small ways that we show up for each other really matter. And it may be like taking food for someone who’s lost a loved one or just sending a text message or something like that. I’m also very grateful to my various care webs. There are people who check in on me, and through the disability Justice Collective and through my interpersonal relationships, people who check in on me every day to make sure that I’m OK. Because I’m someone who, if I do get sick, it could be really bad. And we all just try to keep each other alive and thriving and give each other what we have when we have things to give. And for me, that’s all I need right now.
JILL: How did you become part of those communities that you’re part of?
AIMI: Yeah, this is a really great question, and it’s one that I wish people asked more often. It’s not something that just falls into your lap. You do kind of have to cultivate it. I have a lot of different disability communities, and my family was the first one. There are tons of disabled people in my family, and some of them use that word and some don’t. But we always create access for each other, and we talk about access in different ways. And it’s really central to how we communicate and how we share space and things like that. But I think my political sense of disability community really came about in my 20s after I got some diagnoses for things that I’d been dealing with for a long time and then realized that there were other people who had some elements of my experience that I could be in alliance with and communicate with. And also through academic disability Studies, being around were cross-disciplinary kinds of spaces. So, when the Society for disability Studies conference was still going on, being in spaces where there were people with like hundreds of different types of disabilities and identities and all going to a dance party together, going to conference panels together.
And then in my city, I would say about six years ago, the Nashville Feminist Collective formed. And as part of that, we had a disability Justice caucus that then sort of went off on its own and became the disability Justice Collective. And our meetings were always both in-person and virtual, and we were doing all sorts of access making together. We were making accessible zines. We were doing Mapping Access stuff. We were reading the Sins Invalid disability Justice primer. And so, some of the disability community that I have here that is local was forged through things like political education, working on specific projects together. And that was very different than my kind of diagnosis-specific disability communities. Although some of those are pretty radical, but others are maybe a little bit more kind of medical in the types of things that they discuss.
And I think also during this time in the last 10 years that the discourse of disability Justice has been emerging, it has been making it possible for activists to connect with each other across spaces with the understanding that we’re working toward very similar goals. And so, that’s been really valuable for me as well. And traveling, before, when it was possible to travel. Like when I came to Michigan to hang out with you all and meeting all of the people in your extended networks, disabled people and non-disabled people, like art people and kind of having these conversations, to me, that’s how disability culture is made and how it spreads and how people get invited into it. And it’s always from this place of like, join us and be in community with us. And to me, it never feels exclusionary like some movements sometimes do. And I’m really grateful for that.
CHRIS: We had a conversation with Nancy Hansen. She made a really interesting point that some of our other guests have made, too, which is, we have been trailblazers for a long time, disabled people, that community that you’re talking about. And that we have, through adaptivity and through interdependence and through welcoming and openness, like you’re saying, we’ve built a community based on adaptability is at the center of what we do. And Nancy made this great point about like, there’s an opportunity now for us to be able to be part of the solution, right, rather than part of the, well, part of the problem. And I’ve been sort of going back and forth thinking, is that really gonna happen? Is that going to happen? Is there potential for that to happen? And I’d sure love to know what you think about that. There’s obviously a shifting or a turning right now. How are you feeling about the next stage of what’s happening?
AIMI: Do you mean about the future of the pandemic or ableism or global capitalism?
CHRIS: I’m wrapping it all— Yeah. [laughs] Yeah, I think all of them together. I think COVID-19, but also the community and our role in the world. I mean that’s really what I’m curious about.
AIMI: Yeah. You know, I’m of many minds about it. In one sense, it’s like, there’s this crisis that is happening that could have the potential to let non-disabled people understand a little bit better what disabled people are going through and why we have the adaptive skills that we do and to try to build alliances with us around that. At the same time, we are being devalued in triage situations and treated as expendable, and other people are being treated as expendable, too. And I just keep thinking about like in feminist political economy, there are a lot of critiques of the idea of capitalism as this monolith and the idea that we’re all just gonna be taken over by economic structures. Because I do think that we find ways to resist and redistribute and act strategically. I mean, I can’t predict what all the strategic actions are gonna be that people take.
But in my worlds right now, I do see so much attention to redistribution and work to make sure that university staff don’t get fired or that students or people who have lost their jobs have access to other kinds of income and employment. And it’s only been like two months, and it’s amazing just to observe all the different things that have been built in that short period of time and with really a focus on sustainability. So many people are doing such a better job of saying, “Hey, I’m exhausted. I can’t do this Zoom call.” Or, “I don’t have capacity for this.” Or, “Can I take over part of this for you, because I know that you’ve been working so hard on this other thing.” And those are the kinds of social relationships that are going to help us survive. A lot of that stuff was missing in our lives from before for many people. And those relationships and ways of relating are getting forged. And there’s so many people that we can learn from and listen to in this process.
[chill lounge music break with a light breeze blowing]
AIMI: So, for my podcast, Contra* I’m about to release 10 new episodes over the next few weeks. There are interviews with Indigenous people, disabled people of color who’ve been talking about all of the intersecting knowledges and experiences that they’re bringing to bear on this moment. But what I feel is that right now, we’re all forced with some collective choices. And the best thing that we can do is just keep showing up for each other and building capacity, basically, to keep doing that into the future. And I think this is something that really privileged people maybe have not had to do before, but I’m watching them do it and learn from it. And that is heartening to me. And so many other people whose lives are just constantly under threat are continuing to do what they were always doing. And I’m also just reminded by so many of the conversations that I’ve had that the crises that we were facing before have not gone away. Climate change isn’t going away. There’s still basically concentration camps at the border. And we still need to fight for each other and show up in those ways. And I don’t know if it’s like internalized ableism or something, but I kinda feel like if we stay busy with that stuff, we’re gonna be a lot more OK than if we don’t stay busy with it. So, I’d like to be hopeful, and I’m hopeful most days when I wake up. And I kind of look out at the world, and I see so many people working hard together to show up for each other.
JILL: Just as a preview from some of your podcast interviews, what are themes that you’re hearing across the conversations?
AIMI: Contra*’s usually focused on disability and design, and this time, I was really focusing on themes of some people talking about eugenics and some people talking about solidarity and mutual aid. One of the themes is just noticing how historical patterns of eugenics are reemerging or have been in continuity until this moment. Michelle Murphy, who is an Indigenous Feminist Science Studies scholar from Canada, she wrote this incredible book called The Economization of Life. And it’s basically about how people get labeled as like killable in the name of the economy. It’s unfortunately, very relevant to this moment. She also, though, has this concept called ultra life, which is kind of what happens when our lives and bodies are harmed and altered, and still, we find ways to survive. And I think that’s a really useful concept for disability politics as well. So, a few people talk kind of along those lines.
I interviewed a whole bunch of disabled people who organized their local mutual aid networks, and we talked about some of the things that are hard about that and also some of the possibilities and affordances of that. And I talked to some people working in contexts of universities and doing radical redistributive work within those spaces that right now are dealing with kind of these crises of not knowing if students are gonna enroll in the fall and what to do with staff, etc. Yeah, kind of like solidarity is a big theme, mutual aid, and just like analysis, honing our analysis of this moment. And I’m probably gonna keep recording some of those episodes going into the future, as long as I have the resources to do it. So, we’ll see.
CHRIS: You’ve mentioned a couple times the idea of keeping our analysis focused and keeping our analytical framework alive and well. And I’m wondering, have you folks thought about whether or not the terms of analysis are changing? In other words, the actual impression of disability Critical Studies, is that changing in this moment?
AIMI: That’s a good question. I guess it depends on what spaces we’re talking about. I don’t know that it’s changing within the academy, but we’ll see. The ways that we would be able to tell would be like based on things that get published and produced and stuff. One place that I know that disability Justice ideas are taking hold that were not really given as much significance in the past or not foregrounded in the past is in the world of organizing. For a long time, disability’s been at the periphery of social justice movements in terms of general discourses. And in the last few years, people have kind of started to use disability Justice as a buzzword, but I honestly haven’t been noticing a lot of meaningful work toward that, except in spaces where disabled leadership exists. And now, around on mutual aid, a lot of the discussions are putting disability at the forefront, and that’s because of really loud work by a lot of us to be like, “Hey. Stop de-centering disability. Coronavirus is about disability, and here are all the analytical tools we have to talk about disability and race and disability and capitalism and disability and mutual aid and things like that. So, I have really noticed a shift there, but it’s because there are a number of people who are working really hard to make that the case.
I think it remains to be seen whether all of these bioethicists and doctors take into account disability as they’re doing medical decision-making. This is something a lot of people have been working on for a long time. And in some places, there’ve been major victories. So, I think it’s Minnesota where disability activists—I might be wrong about this—but I just saw this yesterday that they successfully lobbied with the governor to pass some sort of executive order that would prevent medical decision-making that de-prioritizes disabled people from getting access to ventilators. So, there’s that kind of stuff. I don’t know if it’s gonna happen on a national scale, or if most of these fights are gonna be local. Not that that’s any less significant. But I think we just have to be really fierce about it right now, as we always are and just treat analysis as an urgent area of development and kind of facilitation and things like that. Because it really is, in many cases, what will decide what happens, especially in places where people are exercising a lot of power over life and death.
[chill lounge music break with a light breeze blowing]
CHRIS: Like the work that we do as an organization has a lot to do with access making in arts organizations. So, personally, I am finding it—maybe it’s the moment that we’re in, or maybe it’s the loudness like you said, of a lot of us in the last couple years—but we are making strides in that area of our city that I think are a bit unprecedented. And we’re like, huh! OK. This is something that maybe is changing. And that’s what I’ve been thinking about. Like there are these little victories that I think a lot of us in the disability community, especially social justice community, we have these little victories. And I think we have a tendency to forget that these are victories because we’re just working so fucking hard, right? That one really great thing happens, and we’re like, “Awesome. What’s next?” Do you know what I mean? And so, I hope that we can take a minute in this moment to pause and to say, OK, what are we achieving?
But the other thing that I think might be changing—and this may get a little philosophical. But I know that we’re all up for it, so I’ll bring it up—if the archetype of social meaning has disability somehow as a minority group or has disability at a lower level of society, if that level or if that accountability of disabled people rises, in other words, if we become more accounted for, right, and our ideas are becoming more mainstream or whatever, how does that change the way we view? Like in my career, in my specialty, how does that change the way we look at disability in media, for example? Right? So, I’m watching TV the other day, and Mark Ruffalo has a new movie out on Netflix where he plays two people, the twins. He plays twins. One of them is somebody with obviously, with a developmental disability, and the other one isn’t. And it’s sort of their life together. And I think, OK, 20 years ago, what would we have said about this? We would’ve said, “This is great! We’re getting disability by a really great actor,” and whatever. Now, because of the things that we’ve gone through in the last year or two about disability status of actors and about all this stuff, now I’m like, meh, not so good. And I think that that is a shift in the accountedness of disabled voices.
AIMI: In the last 20 years, we’ve also, we’ve gotten these analytical categories like appropriation, for example, something that we talk about more now. Or kind of going beyond the liberal politics of representation to really talking about what kinds of representations are meaningful and who loses out on employment opportunities and what stories lose their authenticity when non-disabled people portray them. It’ll be interesting to see kind of— I still keep reminding myself it’s only been like two months of this pandemic in the United States, at least, in the sense of us quarantining and all of that. It’ll be interesting to find out if the general public will one, perceive COVID as a disability issue, and then as what kind of disability issue. So, I don’t know that people surviving COVID will necessarily make them more attuned to the politics of how to represent mental disability on the Internet or in TV or media. At the same time, it may make some people think more about things like chemical sensitivities and respiratory access and stuff like that.
It’s also a good opportunity to have these cross-disability conversations and at the same time to really know where alliances still need to be forged. I think that the conversations that we’re having now for sure are different. And if we keep having conversations about the necessity of disabled people as leaders and as tellers of our own stories, then we can probably continue on a good track. [chuckling] Who knows what’s gonna happen.
CHRIS: Well, I’m very curious about the veracity and reliability of the new alliances that we’re making. So, for example, Judy Heumann’s book comes out, and she’s on Trevor Noah’s podcast. And we’ve talked about this before with a couple other people. And Trevor Noah seems to be a very insightful guy, and he seems to be a really great ally. And he said some really awesome things when Me Before You came out and this really, really awesome thing that he said about disabled actors. And yet I think, all right. So, there’s an ally that I think we have. But how long will that alliance stay authentic? I’m always concerned that people will make an alliance with the disabled community, but then end up backsliding into a sorta pity moment, you know? Sort of like, well, we listened to them, we help them, and you know. But that’s me being cynical. That’s maybe two months of COVID that’s coming out. But you know what I mean?
AIMI: Yeah, totally. Something that we talk about a lot in mutual aid organizing is the idea of solidarity, not charity. Charity is like a non-disabled person having a disabled person on their show and being like, oh, isn’t it so nice that you wrote this book? And here’s some stuff I’m gonna say that’s kind of aligned with you. But solidarity is really building meaningful relationships and showing up and committing to the work of anti-ableism and to anti-racism and anti-colonialism. And so, I would say maybe part of the issue, especially in media and these sort of celebrity kinds of contexts, is that there aren’t always structures in place for people to have continued relations and build accountable relationships to each other. Instead, they are these kinds of one-off things. And I think that’s one way that conversations make it into the mainstream media.
And we can all still do our other work of relationship building behind the scenes, too. And that’s actually a lot more important and more impactful and kind of shift the political theater a little bit away from famous people to the stuff that we’re all doing every day. And I think a really good thing we can do is just to make that legible to people, like share it with others in our mutual aid meetings every week. We have a time when we share our success stories because it’s important to show each other how we show up for other people in our lives and learn from that. And I think all relationships can be structured with intention and with attention to power in those same ways.
JILL: Yeah, you’re talking about lifting up a community, right, and celebrating the successes and that seems very powerful and a wonderful model for more people to pay attention to.
AIMI: Yeah, thanks. And I think that’s something I’ve learned from a lot of other disabled people, too. It’s like in part about showing the world what happens, like the things that we do that happen that most people are not perceiving and knowing about. And it’s also about celebration, which is a really important part of disability politics. And Chris, you were talking before about just counting our wins. And I think that’s an important thing to do right now. My lab has been having these dance parties called Remote Access over Zoom. And part of the reason we’re doing that is because all of our Zoom calls are so depressing [chuckles] or boring or just exhausting or whatever, and there need to be spaces, if we’re all gonna be in that kind of virtual space together, we need to have spaces where we dance and sing and flail around and also speak our wins and what we’re celebrating together. There are so many traditions of celebration as a way to keep going. So, I hope we can all lean into that.
I guess the last thing that I’ll say is that I have been learning a lot from other people the last few months about the importance of paying access workers and hiring access workers. And so, as we are all shifting to online spaces, a lot of people are using these like AI transcription things. And I get that resources are scarce. [chill lounge music with a light breeze blowing plays through the next few lines] But if folks have the ability to pay transcribers, disabled transcribers, for their work and to hire ASL interpreters and things like that, it’s a really important thing to be able to do in virtual spaces. And I just wanna flag that, that that’s also part of the economy that is being forgotten right now.
CHRIS: Yeah, absolutely…. All right, Aimi! Thank you. You’re awesome.
AIMI: 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: “Coconut Milky Way“ by Lobo Loco. (Source: FreeMusicArchive.org. Licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.)