Podcast

Interview Date | June 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 away]

[R2D2 beeping cellphone alert]

JILL: There she is! Hello, hello!

RIVA: Can you hear me?

JILL: Yeah!

CHRIS: Yeah! Well, we’re so cool and, or so excited that you’re—

JILL: [laughing] So cool!

CHRIS: [laughs]

JILL: We are so cool!

CHRIS: No, I was, [chuckles] I was gonna say it’s so cool, and we’re so excited that we can just sit and chat with you for a while.

[gentle music break]

RIVA: Hi, I am Riva Lehrer. I am an artist and a writer here in Chicago. I do portraits of people who have dealt with stigma mostly around physical issues, issues of embodiment: disability, gender identity, sexual identity, racial identity, whatever has gotten people in the position of being told that their bodies are unacceptable. My work is collaborative, and I feel very connected to our community.

JILL: We know for you in particular, you have a book coming out. And so, we wanna also be talking about how this has affected your ideas for the book and how it’s going and how we can help with that.

CHRIS: Yeah. 

RIVA: So, last month, or this month still, is Gay Pride, and next month is Disability Pride. And here in Chicago, there was no Pride, no official Pride parade, although I think there was some spontaneous stuff on Sunday, but nothing official. It was mainly in Boystown. The Disability Pride parade is canceled here, and my non-disabled friends are going to the BLM marches; a lot of them are going. And some of them have been two blocks away from me. I was out on Friday, and I walked into the middle of one of them. And under normal circumstances, I would absolutely be there. I would be there constantly, you know.

CHRIS: Mmhmm, mmhmm.

RIVA: And so, I’m thinking about our position of silence right now: that the queer parade still went on in Los Angeles and New York. I don’t think the Disability Parade is gonna happen in New York. I gotta get that verified, but I don’t think so. The discussions, when they first happened with COVID, there was some discussion of the ethical, the bioethics rules that were coming out about healthcare triage. But that’s really the only place that people were discussing the effect of this on Disabled people in public. And then that quickly went away. Some places changed the rules, and some places, I think, just quietly stopped talking about it. Ever since then, it feels like even though people of color are among the most affected, partly because these so-called co-morbidities, they’re impairments, right?

CHRIS: Mmhmm.

RIVA: It’s all those people with impairments, and that nothing’s being framed within disability. None of this is being framed within disability. It’s like I’ve been sitting in on these online conversations about the great American racial conversation. And even when they’re talking about access to healthcare or the level of deaths in the Black community, no one is, well, rarely using the word “disability” to frame this.

And then in the larger context, the fact that we’re in lockdown. Like my life is not changing because my city is opening up. I’m not doing anything different. I can’t do anything different. Most of my friends who have impairments, like if I get this, it will kill me. You know, it will kill me. That’s the status for so many of our friends and our colleagues. And so, we’re in this position where we can’t be out there protesting, we’re dying at a higher rate than anybody else, and just symbolically, this moment of looking at the protests and parades and thinking about who’s absolutely not there and who is the most constrained of anybody, I think, are people who cannot risk getting near this. We know our bodies. We know our health situations. So, I’m trying to talk about this muffling, this kind of position of enforced silence at a moment that everybody is so focused on the public protest and the public conversation, we’re just not in it. Even though we’re totally, whether we’re talking about people of color or people in nursing homes or people not in lockdown or people losing their jobs, you know: Hello?! So, I don’t know. What have you been thinking about this?

JILL: This is a conversation that we just had this morning with our board Chair of thinking: how do you have a presence within the current movement without sidestepping the movement. I don’t know how else to say it. But Chris, you talked about historically, this happening.

CHRIS: Yeah.

JILL: We’re talking about systems of discrimination that go beyond Black Lives Matter.

CHRIS: We’re resonating with what you’re saying, and I think why we’re resonating is that Disabled people, if they are being talked about in the media, there is, in some ways, the sort of absent referent. Like we’re there, but we’re not there. We’re talked a lot about, but we weren’t being listened to, right? And that was sort of the first stage of it, I think, that we were being talked about as sort of a social buffer. You know, “Disabled people are gonna get hit the worst,” and that’s probably where this paragraph usually ended without any sort of analysis. And so, Jill and I said, well, fuck this! Because, I mean, this can’t be our— [chuckles] You know, this is a moment of cultural change that, of course, Disabled people can feel and hopefully will feel benefit from. But then the Disabled voices that came alive on social media was rather impressive to watch.

RIVA: Mmhmm.

CHRIS: Because that was a complete reaction to sort of mass media, right? And so, then you started getting these wonderful articles and blog posts and things from really important people like Crutches and Spice, or we talked to DJ Kuttin Kandi and Leroy Moore and Keith Jones. And so, talking to a lot of different people and sort of really leaning into that intersectionality of Disability and all of these things that everybody’s thinking about at the moment. But there comes a point where—and this gets really, really tricky, and I love that you’re attacking it straight on, head on—with the transition back to the world, we started hearing, very early in our recordings, that there’s this fear in Disabled people about being left behind after things sorta open up, right? I don’t know if we hear it all the time, but certainly we’ve heard that quite a bit from people. And so, then it got us reflecting on, how do we remain politically significant and culturally significant so that our stories aren’t drowned out continually, just as they were in the ‘60s and the ‘70s.

JILL: It’s a really timely conversation and question. I think it just goes to the fact that people, why can’t people see the duality or the multiplicity of identities?

CHRIS: I mean, there’s not enough attention span. So, Riva, just to finish my thought, though, and then we’ll get into that, because I think it’s really important. Because of the political world we live in and because of the way cultural climate works, it’s like we have enough capacity for one tragedy at once. And as you know, as we all know, Disability often enters the conversation as tragedy or something to fear or something to be nervous about or whatever. So, our interpretation, or I think what we’re getting close to or starting to think about is, as a Disability arts organization whose mission is to change communities by talking about Disability culture and art, right, at what point do we need to lean into our movement harder? The alternative is to become very interested in intersectionality, which is what we are also about. But that’s a process that takes a long, long time, right? The point that you’re making is really important, and that is, without a public presence, right, Disability has no ability to influence the conversation at all.

[gentle music break]

CHRIS: And so, Jill just asked a really good question. So, why can’t we focus on both? Well, what do you think? What do you guys think about that? Or all three or four or five or six or whatever, right? Why can’t we see it as a systems problem, or why is that so difficult for us to see?

RIVA: Well, a couple of things. One is you hit on something really important that I’ve been thinking about, which is that Disability culture has worked really hard to move us away from the idea of disability as tragedy. And part of the problem with what’s going on now is that because we’re literally fighting for our lives, I mean, explicitly, literally fighting for our lives, the only way to explain that is by saying we can easily die because of this, or we can easily be vastly more impaired. And so, we’re being reframed as tragic victims at all in order to fight for our rights. It’s not about accessibility. It’s not about inclusion so much as it’s about the edge of the abyss. It feels like it’s right there. And that, first off, is incredibly frustrating: that having worked all this time to talk about beauty and to talk about joy and creativity.

And in the beginning, the first op ed that I wrote was really about how when COVID hit, what I noticed was that, in Disability social media, that people were sharing solutions. They were, as I said, MacGyvering all over the place. This is how you do this. This is how you can get food. This is, these are resources. Where my able-bodied friends were more likely to be posting politics or sort of general medical information about COVID, the Disability community was very practical. And that was fascinating to me. But because this is going on for so long and will continue to go on for so long, we’ve kind of figured out our systems for the moment in terms of how to stay isolated to whatever degree. I mean, not all disabilities, obviously, cause you to be in more peril. But some of them do in ways that able-bodied people don’t think about.

Like cognitive disability or cognitive impairment, meaning that you might have a harder time following the steps to keep yourself safe. And so, even though ID or DD doesn’t necessarily put you at explicit medical risk, it may put you at risk of being in an institution where, you know, that’s a whole other thing of that’s one of the reasons that we’re dying at a greater rate, because we’re still not in a place where money reliably follows the person. And we’re still not set up in a place where we’re not living in congregate homes for the sake of convenience of the able-bodied world. And so, their convenience is leading directly to our death. So, that’s one thing.

I keep thinking about Andrew Solomon and his thing about vertical and horizontal identity. I could have it backwards, but I believe vertical identity means that it’s what you’re born into. So, if you’re born a Catholic, a white person in a particular city with a family that has a family culture of some kind, often a constellation of ways that they live in their city or their community, and so you inherit all this and explicit family history and expectations. So, you’ve got all this identity that you step right into. And then horizontal identity is the stuff that you have to go and start finding. So, if you’re queer, you may be born a Catholic and born into all of these, like a working-class family and with a particular interest in, I don’t know, construction, I’m just throwing stuff out. But if you’re queer, those things may not operate for you. They may not welcome you. They may not be part of. So, then you start traveling horizontally, looking for compatriots and people to help you make sense of who you are. So, you have both these things at this axis.

So, when you’re queer, you’re very often the only one in your family, right? But in queer world, there is a public culture. There’s been a public culture for a long time. Certainly Black culture has been publicly known for a very long time. In Black culture, you have entire neighborhoods for good, and complicated, good and bad reasons. You have establishments. You’ve got a deep history that is generally known that when you start talking publicly, you can draw on all this stuff. You can use examples of Malcolm X. You can use examples of Harriet Tubman. You can. In queerness, same thing. Like there are bars, there are neighborhoods, there are clubs, there’s parades and movements. And Disability still, we don’t have bars. We don’t have clubs. We barely have parades. People generally don’t even know that there’s Disability culture still, unless they’re pretty progressive.

And so, it’s really hard for us to say something like, I don’t know, to start talking about Justin Dart or somebody as somebody we’re quoting. No one’s gonna know who Justin Dart is or Ed Roberts or Marca Bristo who just died or. And so, I think because the things we say don’t unfold culturally or they don’t connect up with general knowledge. ‘Cause think about how much we use culture to explain ourselves: you know, to talk about books and movies and antecedents and other well-known people in the movement, and we’re not there. I mean, Crip Camp is a big deal, right, because it’s like a unicorn. So, I feel like that’s part of the silence, that we’re just breaking through. I feel like we’ve just been breaking through past that point, and now it’s like, I’ve been saying, it’s like each one of us is a bird in a cage where somebody threw a shroud over the cage, and then we stop singing. We’re back in the dark. So, that’s my theory.

CHRIS: Yeah. And we talked to Judy Heumann about that, this idea that Crip Camp is like base one, right? And it’s a great tool, and it’s a great tool to get people to first base. But [chuckles] we also talked to her about the terrible timing of the fact that she was on Trevor Noah with her book, a huge moment, a cultural moment for our movement.

RIVA: On Time Magazine.

CHRIS: I mean, it was unbelievable, right? And then COVID, pppbbbttt.

RIVA: Right.

CHRIS: Right? And so, what are we do with that? That’s what we’re all trying to figure out, I think, in some ways. I mean, isn’t what you’re talking about this sort of reason why those of us in the arts continue to work so hard is that the arts are the calling card of the culture, right?

RIVA: Yeah, absolutely.

CHRIS: And so, I think that’s why we continue to do our work so diligently. Yeah, are there other things, though, that we’re missing and other— Again, it’s not about solutions. I immediately go into solutions ‘cause I’m a male. So, I’m like, OK, how do we solve that? ‘Cause, you know, people will say, “Wy don’t you just live with it? Live with it for a while. Sit with it.” And I wanna be like, “Well, fuck you. And I’m 46. I’ve been sitting with it for 46 years. Like I’m ready to do something, right? I’m ready to do something. So, what do we do, right?” But I know that you expressed some real concern about that ecliption. Or [chuckles], ecliption? I’m making that up. I mean it’s very similar to what happened to Judy Heumann: your book is about to make it into the market.

RIVA: And it’s probably gonna disappear.

CHRIS: Right. And it’s a huge mouthpiece, not only for you, but for all of us. And now COVID happens. And you expressed to me a couple weeks ago or a week ago that that’s really bothering you, obviously, because it’s gonna have an effect, right? It’s right here in the moment, you know?

RIVA: Exactly. I mean, I’ve been working on this thing for years, and this was gonna be the greatest year of my life. I was setting up a book tour. We had a massive launch planned. I was getting invited to go everywhere to talk about the book. The blurbs have been incredible. I mean, it blew me away what people said and who said it. And the press thought that, they had so much faith in it that they did that thing where they print extra covers because they expect it to go into a second printing. And I had talked to my editor at one point, and I said oh, something like, “Well, I guess I know most authors never earn back their advance.” And he said, “Oh, I think you’ll be OK.” So, this is all before COVID. I thought this was gonna be amazing, and the whole book is about, the second half of the book, is about our culture. The first part is about what it meant to grow up in the ‘60s and ‘70s with a disability being told I was never gonna have anything in my life. And then figuring out how to be an adult and how to be an artist and how to be a partner in the face of what I’d been told.

[gentle music break]

I didn’t have expectations when I was young. I did not have expectations. The only reason that I am who I am, whoever the hell that is, is because I met the community. It’s because I met Susan Nussbaum, and she pulled me into a Disabled artist collective back in ‘96, I guess. And I started meeting everybody who was the foundation of Disability culture in Chicago and to some extent in the country. It wasn’t just that we had stuff in common. They had language that explained my experience, that gave me analysis. That was the big thing. It was not really that, oh, I met a lot of Disabled people I liked. It was that what they were doing gave me analysis, and that changed everything. And so, the book is really about that: about who we are and how we influence each other and how the fact of each other’s existence, at least has saved my life.

And so, when I think about my book disappearing, I have so many layers of heartbreak going on. I’m barely surviving this. I mean, you don’t get another shot at a book launch. And your book comes out, and then more books come out. And that’s it. It’s over, and you’ve got this one little tiny, narrow moment. And I’ve already had one or two op eds shelved because mine was not the voice that was needed. They liked them, but mine was not the right voice. My whole life, I was told variously that my voice wasn’t important because I was female and my voice wasn’t important because I was a cripple and because I was queer and because I was an artist. There were all these ways that whatever I was or whatever I was doing was not the right thing. And so, I’ve worked for decades to be heard and to help other people be heard. And just at the moment where I was right at the moment of feeling like I was gonna be heard, it feels like it’s already over. And I’m just not OK.

JILL: That is really heavy, Riva. I’m sorry you’re going through this.

CHRIS: I think in any conversation, what we learn from the Disabled culture is to sit with each other in the feeling and in the reaction because there is resonance, right? I think the three of us all mourn together that that may happen. I mean, I think that that’s just really important just to say that there is a mourning experience in that, and it fucking sucks. Yeah.

[gentle music break]

CHRIS: If the voices of Disabled people are not being listened to, especially around September, October, right, then it has much more impact because our voice isn’t part of that political sorta consciousness. Now, the other part of that, though, is that Black Lives Matter might be a huge part of that conversation, right, in who we decide to elect. I’m wondering if you guys are feeling what I’m feeling, like, really grateful and excited that that’s happening because it needs to happen. But in the same breath, there’s a melancholy because it’s like a speed bump, right? There’s a speed bump in the progress that we’re making.

JILL: Is your book scheduled to come out in September?

RIVA: October 6.

JILL: October 6.

RIVA: And when we talked, I asked them if they would postpone it till the spring, and there were technical reasons that we couldn’t.

JILL: Which, flexibility and all those accommodations and accounting for is something you’ve had to address all your life. And then it stirs up a lot of things, I’m sure, that you’ve written about and lived.

CHRIS: What are the other Disability troubadours that we all know and love, and who take care of all of us? Like all the people in the Disability world, how are they helping or not helping you think about this?

RIVA: Well, I mean, there’s some people I’m more in contact with than others. A lot of the people I’ve been mostly talking to are other writers just thinking about how to use our written work, where to use our written work. I’m back in the studio. So, I’d been away from the studio for almost three years for the most part. I mean, not entirely, but I’m solidly back in the studio, which feels weird because I feel like right now, words are what’s needed more than images. You know, I have projects lined up, and I’m trying to explore portraiture in the face of pandemic lockdown: what is portraiture, how to do portraiture in the middle of lockdown, and that’s getting complicated.

But I talk a lot to Jim Ferris, and Jim and I talk a lot about understanding race. Because his work also has been taking on racial identity. I talk to Anne Finger quite frequently about addressing hard material in your work. Who else have I been talking to? Carrie Sandhal. Alice. I talk to Alice Sheppard a lot. And now I’m starting to work with Alice Wong. Alice Sheppard is trying to figure out how to be a dancer when no one can be in physical proximity. That’s really difficult. Right now, most of us don’t feel like we have answers. We’re mostly saying to the extent to which our work has to do with physical proximity, because we believe so much embodiment, trying to do work without embodiment in some ways is just disorienting as hell. And I mean, we’re supporting each other. But the people I’m talking to right now don’t have a really clear project that I know of that’s— Well, no, I take it back. Alice is doing something. I don’t wanna speak for Alice Sheppard. And of course, Alice Wong has her book coming out this month, in a couple of days.

But at the same time, the people I’m talking to, some of them are also terrified of being in public and trying to figure out how to get groceries delivered and how to, like all the stuff that’s not gonna stop for us. Yeah, what it feels like is that the rest of the world is gonna move forward, and that we aren’t and that we can’t and that nobody gives a shit. And no one is gonna step in to help us. I mean, really, this op ed is about getting people to wear their fucking masks. The point of the op ed is just, here are all these invisible people, you know. All you have to do is cover up part of your face, and all these other people can leave their houses. And until you do that, there’s this entire nation of Disabled people who are prisoners of your noses and mouths. And I, as an artist, have been working for 30 years to get people visible, to get us seen, to get us seen the way that we wanna be seen. And just the moment that we’re breaking through culturally. And I was gonna mention Judy Heumann. And we had this huge moment, and just when it seemed like people were looking at us and wanting to see us and wanting to listen, we’ve lost it all. And nobody is recognizing that because our world is set up to only listen to the people who can make themselves literally visible, literally audible.

CHRIS: I oscillate between—and again, I wanna hear what you guys think about this—I oscillate between like, OK, so I think about, we talked to Alice Sheppard, too. And we talked a lot about her video of her in the tree. I don’t know if you’ve seen that one, but it’s her in her chair up in this beautiful tree. And she had just made it right before we talked, so we talked a lot about that. And so, I have that image in my head as—and I hate to say this word—but it’s an image not only of aesthetic beauty and power, but it’s also, there’s something there about resilience, right, that I see in that video, that Jill and I saw in that video. So, I have that image, and I’m like, fuck! If she’s gonna get in a tree and push, that’s what good art does. Good art says even in the face of this, we’re gonna keep creating, keep thinking, right?

On the other hand, I have non-disabled people sort of— ‘Cause I was, [chuckles] I was sick these last couple weeks. I did some social distance work with my folks yesterday. I was around them. And they live in a very small community, and, of course, all their friends knew that I had been sick, that I had gotten the COVID test, that all, you know, I’m like a fucking book for these people. And they’re all like, “Oh! It’s so good to see ya!” And one guy said to me, “Gosh, you are so, you and all of your community are so resilient.” And I wanted to smack him. You know, I just wanted to be like, “UGH!” That’s what you get from a Hallmark card! That’s what you get from Joni Eareckson. That’s what you get from after-school movies. That’s what you get from Hollywood. Don’t get that from me. Do you know what I mean? So, I’m stuck between the two. But I do find a lot of, I feel encouraged by Alice in her tree. But, but sometimes it’s not enough. I don’t know.

RIVA: It’s not. And I mean, I keep thinking about how powerful it is when we all get together. That some of the most powerful moments in my life have been in a community setting. I mean, whether it’s coming up to DisArt or all the years of SDS or big cultural moments in New York. And these things are we’re all together, and we’re seeing each other’s bodies creatively persist. And we’re hearing each other talk about our thoughts, our personal lives, our plans for work, what’s going on right now. So many of us collaborate. I mean, a lot of the people in our community do cross-collaboration. And I mean, I certainly do. Even when we’re not, so many of us are influencing each other. And when will we be able to do that again? You know, putting on a bunch of masks isn’t gonna let us go meet up.

And I’ve been looking at the rules for what’s safe, what’s not safe, and thinking, I wouldn’t do that. I have one kidney, and it’s not the happiest kidney you’ve ever met. [chuckles] And as kidneys go, it is not a Golden Retriever puppy. COVID is famous for going for kidneys, and it’s famous now for a lotta things. But that’s sort of my personal alarm bell is if I got this, I’d probably very likely lose my kidney, and that would be it. And it’s such a fucking gruesome death. That’s something else I’ve been thinking about. It’s like so many of us who’ve worked forever to keep our bodies alive while trying very hard not to have that be the story of our lives. Again, it’s a split. Like we’re going through all of this experiential medical, regimental stuff. I’m sure you have regiments like crazy about that keep you here, keep you functional. And depending on the intensity of your impairment, you are locked into that. You have to learn your body. You have to respect what it’s telling you it needs in order to persist. And you have to deal with whatever medical realities you have at the same time as trying to explain yourself to the world as not that, or that’s only part. And yet those needs are so intense and so frequent and sometimes public.

I was on this run that I was on just now. Third time in one week, third damn time, somebody comes up to me and says, what did this woman say? She was on a bike. And she said, “Wow! Look at you! Look at you out here! Way to go!” And I get all this, “Oh, I admire you so much for being out here.” I’m like, I’ve just got my little headphones on, and I’m listening to my podcast. I’m doing my long walk like everybody else. But I am an inspiration. In this moment when we can’t turn our backs at all on our medical realities and the danger is so intense, and yet in order to be valued, we have to define ourselves as not just medical problems. I don’t know how to do that except through art and let our art speak for us. But then how do you get them to see the art when you’re basically at first saying, “Don’t kill me? Put on your little square blue schmatta.” [laughs] So, yeah. That’s the heart of the problem right now.

JILL: Yeah, that’s the tension.

RIVA: That’s the tension.

CHRIS: Is the tension the inherent, unavoidable tension of a Disabled life? In other words, there’s one thing to sort of awaken to the fact that we must be both medical and realist and fight against only being that. There’s something about awakening to that and understanding it. But then there’s also like, I know people who know that in the core of their soul, and they have peace from that. I have moments of that when things are going well and we’re around each other, like you said, and when the art events are happening. And when Drag Syndrome happens here in Grand Rapids, and all the world blows up. And it’s like, OK. We know the realities, but we are also doing this. This is what we do. Can you live with both, right? Jill, who have we met over the last couple months that just modeled that?

JILL: Yeah, but what you’re saying is living with both, but what we’re talking about is only being able to do one.

[gentle music break]

JILL: So, Riva, you have a book coming out. You can live with both if you can celebrate this amazing life accomplishment and tour and do all those things, right? To me, that feels like that’s the balance. But when that’s taken away, there’s not a balance anymore in the conversation.

CHRIS: And then all that we are is that body part, right, is that—

JILL: Right. ‘Cause you can’t be out at the protests like you’re talking about.

RIVA: Yeah.

CHRIS: Right, right.

JILL: You can’t be out at other events, or you’re not showing your work in exhibitions and galleries and talks and colleges and.

RIVA: I can’t go to the bookstores. I can’t do performances. I can’t…. I mean, we’re talking about a balance. We’re talking about having these things exist at the same time. But if you think of COVID as this massive boulder that’s smashed down on one side, that’s what’s happened, is that, again, because of the peril that so many of us are in, we’re being reduced to again, the serious medical problems where we literally have to start citing deaths in order to be taken seriously.

JILL: But that’s what Black Lives Matter has done, too.

RIVA: Right.

JILL: They’ve had to cite deaths to be taken seriously.

RIVA: Yeah. That’s a really good point.

CHRIS: But we are losing people. But it, again, has to do with visibility. We mourn, as a society, the death of George Floyd ‘cause it happened on the street corner.

RIVA: Right.

CHRIS: We’re not gonna mourn the death of somebody with muscular dystrophy who’s spent the last 20 years of her life in a nursing home, right? Because that’s just there’s no drama there. It’s not sexy. It’s not law and order. It’s not…. It’s just a reality that everybody— ‘Cause they have this this preconceived notion of disability as tragedy anyway. They’ve already made up their decision. Aw, that’s bad that they died. But this guy.

RIVA: Sucks to be you.

CHRIS: Yeah, yeah. Sucks to be you, right.

RIVA: Yeah, I mean, when people talk about nursing home deaths, they keep saying, “Oh, it’s grandparents. It’s people in their 80s.” I’m going, “Do you have any idea who’s in the nursing homes?” And that just, except for Joe Shapiro, nobody says this, you know! I just adore him, but how many Joe Shapiros are there?

CHRIS: There’s zero, 1.5. Yeah, yeah, yeah. Yeah

RIVA: Yeah. And this guy Eric Garcia at The Post apparently is interested in disability stuff, and Peter Catapano at The Times. But those are op ed editors who’re making space for the voices, but they’re not going out and doing what Joe does, which is actually investigating what’s going on. So, when you think about the number of people covering the BLM movement and/or the COVID situation and/or #MeToo versus the number of people covering what’s going on with Disabled people, we’ve got one person?

CHRIS: Yeah, and even him, like when he does his stories, I’m always so grateful, but then I always find myself yelling at the radio, too. Because the hosts, they listen to this huge story, and then it’s like, [bored voice] “Wow, really important news there. All right. Now, we’re on to,” you know what I mean? There’s no moment. There’s no moment to sit and contemplate! We do need moments to sort of, again, live in it, live and let it breathe, right? And feel that, feel that breath and feel that sort of life that maybe you’re not getting a full picture of.

RIVA: So, what do you think I should do? I mean, I have a book coming out. It just got picked up by Virago. My U.K. rights got sold to Virago, which is fantastic news. I mean, I don’t wanna say who it is, but I’ve been emailing with a friend who’s a very famous filmmaker and somebody I met at MacDowell. And he wants me to send him my book when it comes out. And I don’t know if he’ll do anything other than read it, but [chuckles] it’s nice. And this is all great, but compared to what it should’ve been, I am grieving a lot. And I don’t wanna focus on the grief because to the extent to which I’m focusing on the grief, I’m not being creative about how to see my way past the grief. So, I’m definitely taking suggestions.

I mean, one thing I’m thinking about doing, we had a huge venue for the book launch, but it’s inside. And we’re not gonna be able to, I don’t feel safe doing it. So, I’m thinking about renting a parking lot near the gallery. I just joined Zolla/Lieberman, which is a long-time really respectable gallery in Chicago, and there’s a parking lot across the street and one right next to their building. And they’re checking into how much it would be to rent it for a Sunday afternoon and to have an awning. And it’s the first week in October; it’s not the worst weather. Often it’s still quite warm. And folding chairs and the sound system and social distancing and have a book launch outside. But then you are dealing with weather, and you are— I don’t know whether Illinois will still be in the phase it’s in now where we’re allowed to have gatherings up to 50 people if they’re outside, or whether we’re gonna be like every other city that once it’s opened up, within two weeks, everything starts to collapse again. And so, what Chicago is gonna look like in October is anybody’s guess. So, I’ve just been really struggling to think well, what, other than endless video and people are burning out on that.

JILL: Yeah, I’m curious if you know what Alice Wong is gonna do.

RIVA: No, I’m gonna be talking to her, though. I’m doing Alice’s portrait. This is one of the things I’m doing. So, I am trying to rethink portraiture, and so I’m setting up a series of sittings over Zoom. But to think about, on one hand, staying connected and portraiture in the time of separation, but also the fact that portraiture is always a reconstruction. It’s always a fragment that you’re taking pieces of someone and synthesizing them apart from the actual body of the person. And to some extent, something like a Zoom portrait is just an explicit continuation of what portraiture is. There’s another project where I’m doing something else entirely. So, I know I’ll be talking to Alice. But, she’s got the Disability Visibility Project, and I imagine that that will really help her with whatever audience.

JILL: Yeah. The reason I’m asking is because the power of movements is the collective. We spoke with Sara Hendren a week and a half ago as well, and she has a book coming out in September.

RIVA: Oh, gosh!

JILL: I mean, the way we look, is what is the collective voice? Who are the powerhouse voices? And to have three of you with books coming out within months of each other—

RIVA: Well, and Judy Heumann.

JILL: Oh, and Judy Heumann! So, what is the potential to come together to bring all your networks together for exposure? I mean, these books are companions to each other!

RIVA: Yeah.

JILL: I just, that’s where my mind goes, is because—

RIVA: How can we do that?

JILL: —the networks in the Disability community, and there may be other artists and other authors and writers and activists who are doing something as well. But with all of your platforms?

RIVA: I mean, Nicola Griffith had her memoir, or fictional memoir, come out middle of last year, and that didn’t get nearly as much attention as it should’ve. I don’t know. [unclear; cross-talk]—

JILL: I just wonder. I just—

RIVA: —a virtual writer’s conference or a literary festival.

JILL: Yeah. Mmhmm.

RIVA: You guys are the mavens of that kinda thing.

JILL: Well, and I mean, that’s something that we like bringing people together for intense, a more intense impact and exposure and conversation. That’s where I would go is the collective voice needs to get out there. Crip Camp, like you’ve talked about, there’s not enough people who know. There’s so many people who watch Crip Camp and said, “Wow, I never knew.”

RIVA: Oh, that’s awkward.

JILL: Right. So, if there’s a larger contingency who’s saying [chuckles], “Wake up. Pay attention.”

[gentle music break]

JILL: And are there any people of color or any people who have different marginalized, shared experiences that could be part of that, right?

CHRIS: Right. Like Leroy had a thing come out a couple weeks ago.

RIVA: Oh yeah?

CHRIS: Like a self-published thing, right? I think it was self-published through POOR Magazine.

JILL: Yeah. So, there’s people out there who are the leaders.

RIVA: Oh! Cyree Johnson had some poetry come out.

I think that trying to find out what the really well-funded venues are doing is helpful. Like what are the models that the big museums or the literary festivals or the Sundance-y things, you know. Go and look at the big shiny people and see what they’re doing and see the extent to which we can find a model. One thing that occurs to me is that maybe I would do something for 20 minutes and then 10 minutes of drawing somebody as we’re talking onscreen or something. I mean, do something that people don’t generally get to see. But I don’t, you know, I don’t know. I don’t want it to be gimmicky. I wanna have a deep conversation. But I mean, until we can get together or mail things to each other or…. I don’t know. I don’t know. But I certainly want to.

JILL: Well, even before COVID, you were reaching out to people to try and pull groups together to see who has the bandwidth to create something.

RIVA: At this point, I’m gonna be working on Zoom portrait with Alice, a portrait with, oh, Sean Saifa Wall, who was at the TED Talk, Saifa, went on right before me, the intersex activist. So, I’m doing Saifa’s portrait. But what we’re doing there is that I’ve hired a photographer in Atlanta ‘cause Saifa was gonna come in and spend a couple weeks here posing for me. We have this whole elaborate image for him. And so, we were just making plans of what Airbnb and everything when COVID happened. And then it turned out that Saifa got a fellowship to go to England for several years, and that was gonna obviate anything. So, what I’ve done is I’ve hired a photographer, and I’m gonna be art directing the photo shoot over Zoom from here. And then the photographer will be sending me reference photos, which I don’t wanna do. But that is the only way that I can do a full-length nude. I mean, with Alice, I can do a close-up face over Zoom. Full-length nude over Zoom, not an option.

And then I’m supposed to be working on Marca Bristo’s portrait and that’s a whole long thing. Oh, and then these two over here, the portrait of Achy Obejas, and the other room, the portrait of William Fugo. And those are both close to completion. And then I’m supposed to be writing something with Clive Wynne, who’s a canine behaviorist. So, I’ve got a lot going on. I mean, I can make work here, but then what?

CHRIS: I think then you hook into our community, and we push it out in our channels. And is there a marketing campaign within the press, within Penguin? ‘Cause I’m wondering if there’s a way to create a sales message that hits some of the fear. I mean, there’s a creative way to sort of take what’s happening right now in the very moment to this book. I don’t know what that would look like, but there could be a sort of social call to action that matches up with the book or something.

RIVA: Well, I will let you guys know. I know that they’re gonna talk to the editor at Virago about collaborating, and I’m trying to kind of gather up some people, but it’s just that it would’ve been fine. Everything would’ve been fine. I have so many contacts, and I have so many people who would wanna bring me out or interview me or something. And now I’m lost. I mean, I know how to make some work for the meantime. But I do think that getting the bunch of us together in various permutations to talk about writing about disability in 2020, I think that would be really important.

CHRIS: Yeah, I mean, we’ll just keep thinking.

Well, thanks for talking! I mean, it feels really good to be able to talk with you about this real stuff.

JILL: I know it’s another Zoom time, but this is—

RIVA: Yeah, I’m fine with these.

JILL: This is what we love to do.

RIVA: Well, I don’t have any problem with Zoom. I mean, I live alone.

CHRIS: Cool.

RIVA: I love seeing actual faces.

JILL: Yeah, good.

RIVA: I’m not burned out on it, so.

CHRIS: Good, good, good. Yeah, us cripples have been doing it for years. [laughs]

RIVA: No shit! I mean, it’s just like people are such wimps.

CHRIS and JILL: [laugh]

RIVA: They’re upset about wearing a little piece of cloth on your face?

CHRIS: Yeah. Yeah, right.

RIVA: Be safe, my friends.

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: “Laying in Bed” by Borrtex. (Source: FreeMusicArchive.org. Licensed under Attribution-NonCommercial License.)

 

In case you’re interested:

NYTimes Article: The Virus Has Stolen Your Face From Me by Riva Lehrer