Episode 54: Deana Haggag

Chris and Jill are joined by Deanna Haggag, President and CEO of United States Artists (USA), in this episode of the My Dearest Friends Project podcast.

Interview Date | April 29, 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 mellow music that plays through the first two sentences]

DEANA: My name is Deana Haggag, and I am the CEO of United States Artists, which is a national non-profit, individual artist grant maker based in Chicago, Illinois. We give artists unrestricted fellowships each year across disciplines, across geographies, and we’ve been active since 2006. This job, for me, is the first job I’ve had that is not in the presenting world and really focused on supporting artists sort of very directly and not necessarily commissioning projects or working with them in that kind of capacity. And this is also the first job I’ve ever had that is not squarely in visual and performing art. USA’s a really wide funder. So, we fund in film, literature, media, music, dance, design, sort of across the board. And as I mentioned earlier, it’s hyper-national. I’ve always known the power of art, but it’s been really incredible to get to have this job and watch it manifest in all of these different forms in every part of the country and really, really suggest the power of culture to bring people together, the power of culture sometimes to actually isolate people from one another, and the various ways that institutions could exasperate and/or promote either, depending on the efficacy of their work. I think culture is so deeply important, and I’ve always known that. But I really appreciate getting to see all these other disciplines over the past three years that I’ve been with United States Artists.

I think for me, culture and art are so important because I think it’s actually one of the first and probably the most important way human beings self-actualize. And I think, you know, in visual art, visual art, capital C Contemporary visual art, can be a really isolating discipline, I think as many of us know, for most of the general public, however you define that. But something about the ways that even when we’re little, as kids and into our adolescence and our adulthood, that we use music and film and media to make ourselves who we are and then find sort of our tribes from there, I think are so important to the human experience. And I think the ways that we pick our friends and we animate our families and we find close colleagues in the workplace oftentimes are at the intersections of how culture operates and how it informs us as to who we are. And so, I don’t know. For me, the idea of art is just so fundamental to how people get to exist in the world.

If I take it one step further, I am then really struck, especially these days because of the COVID-19 pandemic, over what is it to make sense of the world that we are in? And what is it to discern the difference between what we’re told and how much we believe it? And I think one thing I’m working out really is a few years ago, I heard the artist Paul Chan in a lecture say—this was sort of shortly after the last presidential election or maybe right before, but right at the time when it became really, really clear that it was incredibly likely that Trump would become the 45th President of the United States—and in a lecture, Paul Chan shared, and it’s been sitting with me a lot during COVID-19, that he thought one thing art did that was really important is it actually taught you, it helped you discern when you were being conned. And something about being able to sit in and out of a fiction is really important to how humans intake information. And there were a lot of conversations swirling about what type of person voted for Trump, and I think in Paul’s assessment—and I agree with him—it was not a matter of how well educated you were, which we subsequently knew to be incredibly true. But I actually think there really is a direct correlation between people who live a life and culture daily and the ways that they discern critically the information around them.

And I’m also struck by how advanced conversations are in the cultural sector around race and class and gender and disability. And I’m not saying we do it right. I’m not saying we do it the best or as fast as we need to. But the ways that the sector’s at least willing to engage those issues, I think, is another gesture to how important art is as we frame what it means to be alive and what it means to live together and what it means to see the humanity in another person. And I think in a pandemic that is quite literally and physically keeping people apart, I think culture will play a massive, an immeasurable role in how we still find ways to connect with one another.

With that, I think one thing I wanna name about the disability community in the arts or crip community or one that I feel deeply rooted in is disabled artists have known how to make community and culture irregardless of physical distancing, right? And I think for many crip folks, physical distancing and social distancing are not confused, right? They are not the same thing. And I actually think there is an incredible opportunity for non-disabled people to engage crip and disabled discourse as they now reckon with physical distancing, which they’re told is social distancing, which I don’t actually think is true. I’m really struck by how terrifying the pandemic is for disabled folks, how differently it hits us. And yet in a different way, we’re more prepared for it than like, you know. I’m currently living with two non-disabled people, and it’s just an interesting, like the way my body is able to cope with this anxiety, even though the physical fear is different than they are, because they’ve never had to do this before. They’ve never had to be home alone and not engage the world as freely as they could before.

CHRIS: We’ve been hearing that a lot in the discussions that we’ve been having, that the modality of disability is something that is gaining insight right now and becoming more clear to people.

DEANA: Yeah.

CHRIS: I would love to hear a little bit more about whether or not you’re hopeful, or how do you feel about that modality being shared? Because there are those moments where I think we think, OK, as disabled people, we can help navigate this landscape a little bit. But there’s also the other side, and I think Jill would agree that we’ve been hearing this a lot, like eh, we might be called on to help. But more than likely, we’re all gonna get used to this life like this and then move on and not sort of take that cultural pause that you’re talking about, take that pause to let cultural information sort of seep into our consciousness about disability. I wonder if you might talk about that a bit.

DEANA: Yeah. I mean, I think we need more disabled folks in positions of leadership, right? Like we just do. We just need them in all of these infrastructures that dictate how most of the general public receives information and participates in society, digitally or otherwise. So, that, I think, we’ve always kind of known. I think there is more of a lens on disability right now. I think actually a lot of that is due to culture, right? Like certain cultural practitioners that have, for lack of a better word, crossed over into a mainstream, or there’s a little bit more of a mainstream effort to find some of those things. I’m thinking a lot about how interesting it was that Crip Camp came out right when people were told to stay at home. So, big love to all the Crip Camp folks, but it was kind of extraordinary that this film sort of came out in this way.

But I’m hopeful? I am not hopeful that non-disabled people will figure out on their own that there is a community. And I wanna be really clear. It’s not just a community that understands the infrastructure of this kind of thing. It’s like a community that understands all of the other dimensions, right? The physical dimensions, the wellness dimensions, the psychological, emotional, intellectual dimensions of what it means to be physically distant and still socially present. I don’t trust necessarily that non-disabled people will know to look. I am hopeful that when they are instructed to look, they actually will. And I think I am curious about all of our platforms to do that. And then I’m conflicted because it is just so exhausting to be disabled right now! I’m struck by how many close disabled friends are telling me on one hand, they’re being asked to do more Zooms than they’ve ever been asked to do. They’re being asked to consult folks more than any other moment in time. And this thrills me for both our community and a non-disabled workforce. But then, on the other hand, I’m like, this is exhausting, you know? And so, I’m trying to figure out how to reconcile both my hopefulness and my conflicting feelings about that.

Yeah, I think now we can never go back. We can never go back to employers telling disabled folks they can’t work remotely. We can never go back to businesses saying they cannot make special accommodations. We can never go back to the way airlines were infrastructured to not really protect crip bodies at all. There are ways in which I think there’s an opportunity to really have non-disabled folks stand up and say, we can never go back. The veil has been lifted, and now we actually all know that every policy organizations and institutions think they have is just a Google Doc. And boards are not some big, anonymous force in the sky. They’re just 12 people sitting in a room. If they wanna change their mind about something, they can. And I think the pandemic has really laid bare how ridiculous so much of the tape in the infrastructure was. And I think disabled folks have always known that. But now I think everyone else knows that, too.

[mellow music break]

JILL: Early on, you said how culture and art help us self-actualize and make us who we are. How is the pandemic contributing to that, that self-actualization?

DEANA: I think the pandemic is bringing out the absolute best and worst in people. I think that’s what it does. I think that’s what all pressure moments do. So, I think we’re watching things unfold exactly the way every single piece of data and science has always told us it would. United States Artist recently joined a coalition of six other non-profits to start an artist relief fund. So, it’s a place where folks can apply for unrestricted $5,000 need-based grants if you’re really struggling. And I wanna be clear, we are really focusing on need. The stories we’re reading are just gut wrenching, and it’s folks who can’t afford groceries, medication, child care, housing. When we were launching, there was all this anxiety around how will we make sure that the fund is equitable? How will we make sure that the fund is equitable? How will we make sure? And, you know, ‘cause it’s something that comes up generally in all of our orgs and all of our personal lives.

And this thing happened with the grant where the way we designed the system is that it is really calling for need. If you are not facing a dire financial need, we will not read your application more than likely. Because in our first week, we got 55,000 applications, right? And so, there’s no way to read that many. And if you really focus a grant on need and you build it that way, all the things we know about American society tend to be true. If you are a person of color, you are disadvantaged. If you are a disabled person, you are economically disadvantaged. If you are living in a tribal nation, you are disadvantaged. If you are a trans person or a woman in a low-income community, we will find you sooner because, if you’re telling the truth, the way the grant works is it’s just calling for these needs. And needs get exasperated based on the intersections of people’s identities. And so, I think what the pandemic is gonna do is it’s gonna help us not just self-actualize, but really, really understand other people quite literally. And not just pontificate about their lived experience and not just consider maybe what it would look like to be more equitable. But literally watch entire swaths of our country reach a breaking point because of these equity issues. So, I think that we’re watching really unfold. You don’t get to consider what it would mean to be equitable anymore, because now it really is an issue of life or death for so many communities.

And on the other hand, we’re watching people self-actualize based on their own bias. Now it’s time. If you are someone who is feeling a lot of guilt and shame because you have too many resources right now, like gotta give them away. You know, like if you are someone who is really struggling with some of the things you’re hearing and you feel a lot of guilt about whatever privilege you have, there is a solution. It’s to help. And I think right now, help is literally legislative and economical. If you are someone who has power, lobby. If you are someone who has power, give. And I think we’re watching people self-actualize in ways that aren’t always great either. We’re watching privileges kind of get doubled down on, you know. And I think really easy examples of that are even some of the small business loans and the payroll protection programs that advantaged things like Ruth’s Chris and Shake Shack and not small businesses, right?

And I think when we’re done making sense of that, we can try to find a middle ground now, that, again, isn’t theoretical, isn’t abstract, isn’t about a grant report. It’s literally some people will die and some will not, and that is entirely tracked onto their economic advantages. And right now, we are living in a health crisis that is also the largest economic crisis many of us have ever seen in our lifetime. So, yeah, I think it’s watching people self-actualize the best and worst and most vulnerable and most power hungry parts of themselves. And I think, I hope we can all move through this with grace as it gets a little bit worse before it gets better.

[mellow music break]

CHRIS: What role does art play in that movement of figuring out people’s needs? I’m so frustrated by our political context and our political climate right now, that needs are getting slapped down as a sort of privilege as well, right? And so, you have all this rhetoric that sort of filters what those needs are actually trying to communicate. And so, I’m curious if you see a connection—I’m sure you do—between the art of culture, let’s say the art of disabled people, is there a connection between that art and this sort of self-actualization or this sort of community that we’re fighting for, right? Is what’s the role of art for that?

DEANA: Yeah. So, I think a few things. My colleague at United States Artists, Michael Pusey, actually said something a few weeks ago that’s been sitting with me real high-level ever since. We were sort of talking about what is a new economy, right? Like, where are we going? What is a new frame for all of this? And Michael said something that was, I’m paraphrasing here pretty loosely, but more or less like, needs are the new economy. If we had done a better job as a society taking care of people’s basic needs, we literally wouldn’t be here. We need to start really framing an economy based on those needs and thinking that the culture of taking care of one’s needs and care period is the only way to get through this and the only way to ensure it never happens again, right? ‘Cause of another pandemic is inevitable. Pandemics are an inevitability. It’s what we’ve learned, right? Every scientist is like, we’ve always known that this thing will happen. Why were we not prepared for it?

But then I think, you know, if you talk to a bunch of politicos, they’re all real pumped because they’re like, maybe this will finally be the thing that gets everybody universal health care, even though we wouldn’t be here if we had already had universal health care, right? It’s like all of these things is like needs. People’s needs is not charity. It is not something to be ashamed of. People’s needs are the most important thing we can give them. It is the most valuable thing we can offer is, is to care for people’s needs. I think where disability art comes in is it has been really remarkable to be in conversations with the “powers that be,” quote-unquote—sort of investment managers, foundations, banks, all these things—and to watch there be such an intense anxiety about investing in needs, right? This idea that we don’t wanna just be need-based. We need to really uplift people. We need to make sure people are resilient and can survive. And they just don’t wanna use the word “needs,” like it’s a shameful thing. And I think what disabled art has done so exceptionally well is it lifts the veil on that conversation a little bit, and it breaks the fourth wall. And it reminds everyone that we are a, in a body, that that body has needs, whether we like it or not. And that unfortunately, in this system, money is the way that we get those needs met oftentimes, right? And if so, if you don’t have it, we’re in a precarious place.

And so, I think what I’m hoping will happen is I think people need to learn a few new languages to meet this challenge. I think they need to reimagine their vernaculars. I think there’s a whole new lexicon that a whole bunch of mostly dudes in board meetings really need to pick up pretty fast. And I think the place to look for that language is the disabled art community. It’s disabled people, period. But artists make language, right? That is what they do. It is what I think is the whole point of being alive at a certain point. And I think we have an entire lexicon in our community that is sorely needed everywhere else as people really untangle money’s relationship to shame and needs and charity and all these things that make it harder for the folks who have resources to just meet the challenge of the ones who don’t. And it doesn’t need to be this emotional, you know? And I think the thing I love about every disabled conversation I’m in or group is, is like there’s no emotion to it. It’s like a matter of fact: you need X to survive. And it just kinda sucks that you don’t have that. And it kinda sucks that there’s no power to protect you from it.

It’s been fascinating to work at United States Artists because we offer an unrestricted grant. And it’s something we’re really proud of, and it’s my favorite part of my job. And our board is a bunch of visionary thinkers who, almost 15 years ago said, we trust artists to decide what they need. We’re not gonna judge them on it. If you need a vacation, so be it. If you need healthcare, go buy it. If you need to write the next great opera, great. You can do whatever you want with this money. And the thing that always kind of confounds us, is oftentimes, the most vulnerable people are the ones we can’t give the money to so freely. This really harms disabled folks who risk losing SSI benefits or SSDI benefits or any other government benefit that says you’re among the poorest of society. And so, this one-time possible thing that could buy you a little bit of space makes it so that you lose everything else. And I think all of these conversations around money and need and how it works and how it’s weaponized, it needs to get thrown out the window. But I think in order for folks to feel safe losing some of those things, they need something new to dig into that makes sense to them. And I think disabled artists and writers and poets have really, they’re the ones that know how to talk about this. And I think we should, everyone should, be listening to them. It’s wild that it’s 2020, we’re living in the middle of a global pandemic that is literally killing people, and we’re on conference calls where people cringe at the word “need.” It’s like some Black Mirror shit.

CHRIS: Well, it’s because we’re trapped in a conversation about disability and illness and aging as quantitatively negative, right?

DEANA: Yeah.

CHRIS: And so, because we’re stuck in that narrative, any sort of bending of that rigidity is going to be painful, right?

DEANA: Yeah.

CHRIS: And so, art I also think, helps us bend. It helps us bend, you know. I love how you talked about emotion. When you walk into a disability art exhibition, there is something about that veil being lifted. I think that’s a really apt way to think about it. And people are often like, they don’t know what to do with disability art. And I think they don’t know what to do with it because they’re seeing a referent, right, that they’ve often attached to sentimentality or weakness or inspiration. And what happens when those veils aren’t there? It’s like, whoa, what do I do now, you know? And that’s the joy of our work, I think.

DEANA: Oh, absolutely. I would also say the joy of the work is all of those things can be true at the same time: you can both have needs and be resilient. We don’t have to pick one or the other, you know? And also, frankly, you can both have needs and be resilient and have that be shameful. It was shameful that people had to be resilient in the face of their needs. Rather than be uplifted by people surviving, it’s shameful that we asked them to. And I think disability art, to me, just feels like it is constantly breaking the fourth wall on a theater it never asked to be in. And then folks are just appalled by it, you know, or confused or intimidated or all these feelings, which are also really important feelings to have if we’re gonna get through a thing at the scale of a global health crisis that we don’t understand. Like, buckle up! We’re gonna be breaking the fourth wall a lot to get through this, you know?

[mellow music break]

I think it’s hopeful time for disabled artists. I just like that we’ve been right. Look at me. I’m just like, we’ve been right! I don’t know. It’s weird. It’s weird to not think things are as complicated as people make them seem. It really, it shouldn’t be this complicated. And I wish folks had listened sooner, and I hope they listen now.

Also, I think one of my favorite things about disabled community that, especially lately, is it’s also just been a really clear breaking the fourth wall on capitalism. We can all be disabled and still have money affect each of us differently. And I think it’s been really beautiful to do relief work with and around and for disabled folks and just have folks be like, “Hey, this thing is terrifying me. And I am definitely not rich, but I don’t need it right now. I know this person does.” And I think we don’t pretend that money’s the most important thing at the table. I’m learning generally from sort of disabled artists more and more every day, it’s like yeah, money’s not gonna make anybody happy, and poverty will kill them. And we have to exist somewhere between those two poles. And I think there was a moment for a lot of disabled folks to just show up in a system and get whatever they could. And it’s just like they were just like, no. Let’s be really clear here between what is a dire need and what is not and who is suffering and who is not, even though we’re all disabled. And I think those are lessons that I wish the federal government would borrow and other powerful people would borrow that’s like again, everyone needs money to survive. But for some folks, it’s really different. And how do we speak to those differences so that we can give the most vulnerable person the most resource? And I think disabled folks have figured that shit out real quick. Real fast.

And no one has any problem admitting their privilege, or at least in the organizing circles I’m deeply within. And they have no problem saying it out loud to a lot of folks who don’t have those same privileges, and we all just accept those things to be true. And it’s OK, and everyone plays their part as best as they can. And I think the thing I mentioned earlier about folks having all this anxiety about their privilege, it’s like, oh, my God, just sit in any disabled group chat, you know, where someone’s like, “Yes, I am this, but I also come from a trust fund. And so, I’m okay. What can I do to help?” Or, “Hey, I have a tenure track job, so I’m okay right now. What can I do to help?” And someone else is like, “I can’t even afford groceries.” And there is no shame in that conversation. There’s no power to that conversation. It’s just very clear: money is an energy, and it is just a resource that’ll move from one place to another so that we can all survive this together.

And I think non-disabled people can’t get there. They can’t feel like giving money to their friend isn’t a shameful charity for both parties. They can’t sit on a call and be like, “I make six figures, so I’m chill. How do I help everybody else?” It’s so problematic and weird. And I think disabled folks, again, at every turn have just broken every fourth wall. Like, what do we just need to do to get the job done? And I hope non-disabled people really untangle all of that. And I think the pandemic is the perfect opportunity to do that and to not feel any shame about Venmoing your friend 500 bucks because you have it and they don’t. And this shouldn’t be such a big emotional conversation. It should just be a matter of convenience and fact. And we have love for each other, and we move on. I’ve always known that, but I think the pandemic really, really clarified it when every rich disabled person or upper-middle class or just steady jobbed disabled person I knew, steadily-employed was like, “I’m cool. What do you need?” And everyone who didn’t, immediately spoke up, and matchmaking happened. And life was a little bit easier for a few people day by day.

[mellow music break]

JILL: What else have we not talked about that’s coming to mind that you wanna make sure is covered?

DEANA: I guess the thing I wanna say that we did not get to say that will be helpful as we move through the pandemic is, I think the biggest opportunity is actually for journalism. One thing I’m really struck by is how incredibly hard journalists are working to meet this moment and really shed light on how the pandemic is affecting different people. And I really, really hope that the journalists don’t forget about the disabled community. And then also make sure [chuckles] to tell the story that the disabled person wants told, as we try to get away from some of the things Chris mentioned about inspiration and all these things. And so, I think I wanna read more stories about disabled folks who have answers to so many questions non-disabled folks are struggling with right now than I just wanna read stories about disabled folks surviving this against every odd. Because that’s the inspirational narrative the public just knows how to read. No gripe with journalism. It’s a huge moment for media to really show up and tell the right stories.

And I also think I’m learning a little bit that every time I complain about this in my little corner of the world, it’s really editors and their owners. It’s not the journalist. And so, I hope editors worldwide open up their perceptions so that we get the stories we actually need. And I think this affects disabled folks so much. And I think any work we do with disabled artists, when there’s a media story, the fight we have to fight to make sure the story matches the artist, and that the artist’s story wasn’t retold in a way that serves whatever audience the paper thinks it has. Yeah. I just wanna name that there’s the funders and the blank. But today, the power media holds is massive. And I wanna read better stories about disabled folks across the board. And I want disabled folks to be writing those stories also. So, all over the place, there needs to be better media. And it’s one of the reasons I so appreciate your work in particular in this series and everything, because, back to our point about hope, the hope is that enough people hear this type of thing so that it shifts. And it’s not just our community saying the things we all know to be true to one another all the time, and it gets out a little bit.

JILL: Yeah, I think that Crip Camp hopefully has opened that, that perspective of needing to hear from disabled people.

DEANA: Yeah. Crip Camp was amazing! I was just like, this movie that non-disabled people were like, Damn!” disabled people were like, “I didn’t even know that!” Yeah, we need so much more of it. I mean, this year felt like really a few things broke, right? It was like Crip camp, Christine Sun Kim at the Super Bowl! It was just like all this stuff broke in a different way. And that was pre-COVID. And so, now it’s like open the door up wider. Now you actually need it desperately if we’re all gonna survive.

Can I ask before we hang up, is there stuff you’re reading or seeing, sort of like things that have been released recently? ‘Cause there’s all this stuff, the historical, like there’s no lack of an incredible bibliography to make.

CHRIS: Right.

DEANA: But I think the thing with Crip Camp that was so amazing was like it just came out. So, there was this excuse to be like, “Watch this. Watch this.” And I’m trying to keep track of what else is happening.

CHRIS: Mmhmm. Yeah. Anything Mia Mingus, right, lately.

DEANA: Oh my god. She’s amazing.

CHRIS: I’ve been watching her really, really closely.

DEANA: Like tattoo Mia Minguses to my body all over.

CHRIS: Yeah. Yeah, yeah. And Judy Heumann’s book too. I think when Judy was on Trevor Noah—

DEANA: Yeah.

CHRIS: —right? That was such a beautiful moment for all of us.

DEANA: I know.

CHRIS: And then the fucking pandemic happens! And it’s like uggghhh!

DEANA: I know!

CHRIS: I wanted her to move through late night television. I wanted her to get on Jimmy Fallon. I wanted her to have that sort of voice.

DEANA: Especially now. Imagine interviewing Judy Heumann today in the middle of a pandemic on late night television.

CHRIS: Right.

DEANA: That would be exceptional.

CHRIS: Yeah, exactly.

DEANA: It’s like it’s easy to ignore disabled people because society has made us entirely invisible, right? There’s just like a way in which we’re all conditioned to do that, right?

The other thing I think is so interesting is like community is a need.

CHRIS: Mmhmm.

DEANA: Like a deep and profound, like tribal, primordial need for our species. And I think this idea that disabled folks are not only not seen, but they can’t even fathom that a disability community exists.

JILL: Well, because they’ve been, it’s been left out of history books.

DEANA: Yeah, exactly!

JILL: Right?

DEANA: Also, all imagery, all media: it’s just like not even there, right?

JILL: No, it doesn’t. It doesn’t exist.

DEANA: Yeah. And I think the thing even about Netflix, I think the thing about Crip camp, and again, it’s a documentary, so it’s different. It was done so well. But even the fictionalized dramas and shows, it’s like it’s not enough to just put one exceptional disabled person in it. Because, again, what you’re training people is to be like, “disabled people exist.” But then, this like, whoa! To take one more step and be like, [ominous voice] “disabled community!”

CHRIS: [laughs]

DEANA: And to then say disabled community is also selective. Like, you can’t just join. You can’t just participate. It’s like a sacred place for people together.

JILL: Yeah.

DEANA: And I think, I don’t know, it’s just like an interesting like what does it look like to see movies and shows that are about disabled community, not just have disabled characters. And I think ah, that space feels so rich, and it’s not there. Did you see Unorthodox on Netflix? Have you been following it? It’s a show about the Hasidic Jewish community in Brooklyn, New York, in Williamsburg. And I think it’s, from my understanding, the first sort of series—it’s a fictional narrative—but it’s the first series about the Hasidic community, because they are very, very historically private. And there’s been plenty of Hasidic characters over time in media, but this was made by Hasidic folks, casted both Hasidic members and non. And I think it was like when you watch it, you’re like, [whispers] “I didn’t even know that.” ‘Cause, again, there’s an interiority to that community that has never wanted to be shared in that way. And I know there’s controversy all kind of within it. But man, a universe that understands the interiority of disabled community is like, talk about a fucking dream world, man. And then I think maybe Crip Camp uses history to tell a story of that thing. But I think for human, for society, understanding a protest movement is easier than just the day-to-day experience of the interiority of my community. And I’m so curious if we’ll ever get there! Truly that just crip spaces exist, period. And they have their own languages and vernaculars and traditions and cultures. And it’s not just a means of logistical survival. It’s like a subculture. The subculture of disability has no real play ever.

JILL: Yeah. And what’s interesting, and we’re talking to people, some people who have acquired disability, in these podcasts and bringing people into that subculture, like the mentorship and the role models has been crucial in a number of people’s lived experience.

DEANA: Yeah, yeah. That was mine, also.


DEANA: I didn’t, yeah, I didn’t fully come into it until grad school when it just became clear that that’s what that was. And it was like, oh! And it was artists. It was artists in grad school that like doula-ed me in, for lack of a better word, and we’re just like, “Oh, you have no idea. This is like a whole space.”

CHRIS: Yeah.

DEANA: And it’s like it changed my life indefinitely.

[mellow music plays through the next few lines]

Thank you both for keeping this going on.

CHRIS: Yeah, thank you. Yeah.

JILL: Oh, thank you.

CHRIS: Mmhmm.

DEANA: Yeah, we’ll talk. Find me anytime. I hope you stay safe and happy and warm and all the things.

JILL: Yeah, you too.

CHRIS: You too. And we appreciate your time.

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: “American Coot” by Chad Crouch. (Source: FreeMusicArchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)