Episode 35: Alice Sheppard (click for transcript)
Interview Date | April 14, 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 gentle electronic music break]
ALICE: I think partly the thing that we have not been able to do yet and I am really interested in doing is really rethinking what we know about disability and access.
ALICE: In part, this is coming from… Oh!! I mean, it’s coming from so many different places. And specifically, you know, the rethinking of visual-verbal Audio Description has been a part of my own practice for eight years. There’s a moment of an awkward sort of attempt to describe some of the work I’m doing as poetry way back in writing that and thinking that through at Emory with Rose-Marie writing some poetry. And that was really an amazing moment to think through. I didn’t fully have the complete frame and also didn’t necessarily have all of the language and all of the theory together either back in 2011, 2012. The work here at Kinetic Light is coming out of two really specific moments. One was with Georgina Kleege, and we were doing a work in progress sharing of Descent and worked with Georgina a little bit to get description for the work-in-progress showing we did. And you know, Georgina was like, “You know what? This is better than the industry standard, but this isn’t it.” And Josh Miele was there. And he was like, “You know, this isn’t it either.” And so, we had this kind of long and really passionate conversation. Actually, most things in my life happen over a bar. I don’t know if I should be worried about that or not. But we were [laughs] we were eating and drinking and really talking about, you know, what is it, and what could it be? But didn’t have, didn’t really come to any conclusion. But Georgine would use phrases like, “It can’t be the voice of God. It can’t be this single perspective that is describing. And that’s not artistic.” And I’m like, “I agree.” And then Josh was like, “You can’t have just the description of the movement.” And I’m like, “Actually, you need a description of the movement,” because in dance it’s—
And so, you know, we were in this place where we were like, what can it be? What should it be? And then Laurel, who is this amazing, amazing genius, just came back one day like eight weeks later. And she said, “I have a way to do this. I know how to design an app that will enable you to play multiple tracks at once and mix and match them. And all of a sudden you can create.” So, we did! Then the question became like not what is verbal description—or audio description depending on where you’re coming from—but like what is dance when it is a sonic art form?
And you know, there’s been a lot of people doing a lot of work in the non-disabled world around the sonification of dance, where they’re really capturing the sounds and physicality of the sound of the body. You know, Kinetic Light has been able to ask the question of what is it when it is poetry, prose, sonified sound, sounds of the props, descriptions of the light. And Cheryl has been really, really amazing in thinking through some of the, like in our dance short film one of the ways of writing, of making poetic description that is like a piece of poetic prose. And so, all of a sudden, the question of access is not about accommodation. It’s actually about the creative aesthetic itself. And that’s where we are.
CHRIS: This Audimance discussion of the app and then creating an aesthetic experience from what is seen as an objective experience, I really, I don’t want to miss that part of the conversation. Because I think that there’s something really interesting about who sets the rules for access and how access is rarely in that aesthetic space. How was the reception of that Audimance been?
ALICE: It’s been fantastic! I mean, it depends on who you are, right? If you are a sighted audience member who is not expert in listening practice, then the result is, “It’s too overwhelming. I can’t listen to it. I can’t. I can’t. I can’t take it in.” And, you know, as Laurel points out, it wasn’t designed for you, you know. But to people emerging from blind culture, that’s a different perspective. It’s coming from blind culture. I mean, this is when Georgina’s saying it has to be aesthetic, it has to be, it has to be an encounter with the art and not a description of the art. You know, it’s not a displaced encounter. And when we’re thinking about something visually, you’re taking in multiple sources of information and interpreting them in your own way. And so, why wouldn’t you have that as an auditory experience?
I think that the question assuming that the tech part works, and I think that’s, you know, many theater environments haven’t been set up for that. You know, you go to a theater, and the Wi-Fi in the theater is not strong or not reliable. Or there are places in the house that get better reception than others, and there are places where there’s interference. But pending those kinds of things, yeah, the cultural experience works because it was initiated from people within blind culture. The actual tech design that the tech crew had someone with a vision impairment on it. And so, it’s designed by people from within the community. Laurel herself is a disabled artist and designer and tech lead. So, you know, it’s coming from within disability culture. Yeah!
But I also wanna say that that is a big change in itself. That is a big change in itself. But the work is different when we’re looking at deaf access. So, we’re thinking about felt forms, and we’ve been playing with sub-packs, and we’re thinking about where you might want to sit in order to be able to feel the sound. An auditorium like actual auditorium designed to feel sound. So, I think partly, that’s one of the things we’re looking at. We are thinking about access from the beginning, like from the moment you hear about the show.
The people that we’ve worked with and performed with have been very interested in not, for example, dealing with standard theater design where the sight lines are terrible for disabled people. And so, we’ve had some of our best shows have been with people who have been willing to rearrange their theaters. And Michael. Michael is thinking. When he’s designing, he is thinking about perspectives from wheelchair use. I mean, Michael’s a wheelchair user. And so, the design is I mean, this is fundamentally creative, not because of this, the question of representation. It’s not just because it’s like, oh, look. There’s a disabled artist. Or oh, look. There’s a disabled theater professional or a theater tech or a disabled lighting designer or. It’s because we’re beyond questions of inclusion. We’re beyond inclusion. Inclusion doesn’t get you art. It gets you one person onstage. And so, we’re thinking about disability and access emerging from the lived experience of impairment into the work as being fundamental to the work itself and not an add-on or a retroactive framing.
And frankly, you know what? We’re accountable to our community. And so, if people tell us that isn’t it, well, you know? That isn’t it! And then the question is, how do we move from there? And we don’t always get it right. And access is a process, and access can conflict. But the work is doing the work. So, it’s really about the conversations and about the responses than any one thing.
[gentle electronic music break]
CHRIS: Aesthetics on their own are confusing to people, the concept of aesthetics. And so—
ALICE: Can we stop there?
CHRIS: Oh, yeah! Totally. Yeah.
ALICE: Let’s just actually stop there, and let’s dig into that.
ALICE: Can we do that?
ALICE: Because I don’t think aesthetics are confusing to people. Because I think if you step outside the world of disability, people are quite comfortable dealing with aesthetics, right?
ALICE: We deal with aesthetics all of the time when we go to the movies. We deal with aesthetics when we turn on the radio, and we listen to our music. We deal with aesthetics in the way that we choose something to hang on our home, the color of the cushions that you might choose for your chair. Aesthetics are not complicated. I mean, they are, but they’re not complicated. I think the problem is that, because of the focus on inclusion and identity and the necessity of justice and the social-political messaging, there have been two things. One is that there has been a kind of entrainment of art to social and political change. Which is necessary. Maybe or maybe not, depending on what your position is. But disability has been mono-tracked into either identity or social and political change. And so, the conversation about culture and aesthetics has not emerged. Disability has been so tracked into education and awareness for others, not disabled people, that the culture that we live in and work from has not been supported and had its place in the work. I mean, aesthetics are complicated, but they’re not complicated. It’s just that the value of what disability is has been very carefully boxed. That, to me, is the difficulty.
CHRIS: Absolutely, yeah. And I think you’re right that there are limited avenues to understand disability. I totally understand that part. It’s just when I say that aesthetics are difficult, I think the everyday person when you say, “Hey, aesthetically, how do you feel about that cushion on your couch, or how do you feel about the film that you just watched or, is aesthetics”— I don’t think aesthetics is in the vocabulary of culture enough. And this comes from a guy who’s taught media in college for 18 years and is trying to sort of figure out these, how do we get people to think about aesthetics, right? And how do we get people to think about that which is innate and essential within a being? So, I totally understand that part of it.
ALICE: I wanna even like, do we know? Hee hee! I mean, hee hee hee! Oh, I love it. So, one of the amazing parts about disability aesthetics was the way in which Tobin Siebers’ work really pushed that, right? Really offered one of the first scholarly, intellectual framings of what a disability aesthetic might be. That strikes me as being critical to the conversation. Yeah.
I mean, it’s interesting that your experience is of aesthetics not being available. My experience of aesthetics is that they are available. It’s just that disability aesthetics are not available. Like I think people are, in my circles, I’ve been able to, I know it’s the difference of where we’ve traveled academically. But people understand what a racialized aesthetic is. People get gendered aesthetics.
CHRIS: I think they understand the words “gender” and “aesthetics.” I don’t think that it’s common understanding to understand a gendered aesthetic. That’s what I’m getting at. I think the terminologies that we sometimes use— And I’m guilty of this. Jill’s guilty. We’re all guilty of it.
CHRIS: The terminologies that we use aren’t necessarily transformative in themselves. In other words, I can understand a queer aesthetic. And I love the queer aesthetic and I feel it and I know it to be both political and artistic and historical and cultural, like all the things that it is.
ALICE: Mmhmm, mmhmm.
CHRIS: But the people who come to DisArt events or to come to your dance events or who come to our galleries or come to our experiences, right, I’m always really interested in how do we get them to not only OK, I can define disability aesthetics, but do I actually use that to understand disability? That’s where I always struggle. We can get people into galleries, and we’ve done this. And we’ve done it to the extent where I think, all right, I do think that these experiences are sticking with people when they leave. They do have a sort of different understanding of disability. But I always struggle with then them being able to say, like, what that thing is. And that thing that they think they understand and are beginning to understand, in my mind, that is the aesthetic, right? But it’s never something that can just be easily given.
ALICE: Mm. I wish…. Here’s what I wish. I wish we could step back 15 years, and in addition to the conversations that were happening then, we could add two concepts: disability culture and disability aesthetics. And I mean two things by culture. I both mean the terms of daily culture, like the practices that we have that we sort of intuit and learn from being around and being with each other. So, I mean, that sense of culture. And I mean, the culture: the films we produce, the works of art we make, the performances that happen. Because I think it’s not like you can go to a university and be educated in disability art. [chuckles knowingly] Maybe you get a unit if you’re lucky. And as an artist, right, can you be educated in the techniques of your impairment, right? Like what would make mouth painting better?
CHRIS: No, exactly. [chuckles] I think that is a brilliant question. And there’s— [chuckles] Is the disabled aesthetic something that can be felt outside of the culture?
ALICE: I don’t know. I mean, I think, so, I think it can be recognized in the same way that you feel like you can recognize and perceive a raced aesthetic, an aesthetics of race. You know, I think you can educate yourself into it, but I think that there is a conversation the artists within the communities and within the different disciplines are producing in a way that it is highly technical and highly virtuosic and highly impairment-specific. The craft of that is important, and the nuance of that is important. And the intertextuality of it is important. And so, this is something that I think is critical, right? I mean, who recognizes the intertextuality? Who recognizes tradition and innovation and influence and internal conversations?
CHRIS: Yeah, I mean, it’s very difficult for people who are— And I guess that’s what I was getting at to my point about can disability aesthetics be felt? Can it be understood outside of the community? And I think that because disability has been known—to push your metaphor of culture, right—through the lenses of armchair anthropology, right, through people who have witnessed disability culture without living disability culture, that’s the genesis moment of disability experience: when someone else outside of the community says that right there, that person, doesn’t fit into what we know, right? And so, that sort of approach to disability that, you know, people I think are much more open to now to learning about who the disabled culture is and what those heritage moments are and what our history is. Yeah.
[gentle electronic music break]
CHRIS: There is this interesting element of your work that I’m so intrigued by, and that is— I’m gonna read something that you wrote. Is that OK?
CHRIS: [laughs] So, you say this: “My work is neither educational nor transformative for others. It does not reiterate or confirm familiar stereotypes of disability. I’m driven to create art that connects to the beautiful, complicated histories and cultures of disability, race, gender, and sexuality. I do not work in a vacuum,” right? That’s part of your manifesto. That’s on your website, which is very, it’s powerful stuff. Yeah. Now, this idea, “my work is neither educational nor transformative for others,” that is the sentence I really wanna talk about.
CHRIS: Because I think it is intriguing beyond— I love it. There’s something about me that loves it. And there’s something about me that’s like, I don’t get it yet, but help me.
ALICE: OK, so, this is the thing, all right? I do not want to make work that lands with non-disabled people as being essential to teaching them something about the value of the disability experience, right? I mean, no ballet dancer has to account for her choreography or her art form in this way. It is only those of us who live with socially minoritized identities and socially stigmatized and oppressed identities whose work is traced into these boxes for the purpose of teaching someone something about injustice in the world. It’s always tied to any kind of cultural production gets harnessed in this kind of teaching. Now, it may be that if you come out of a piece, and it may be that you do learn something. It may be that you are inspired to do something. Or it may be that something in you shifts or changes. And that’s how it is. But my work is not explicitly tied to that.
So, I have been to so many works of art, readings, performances, in which the artist is teaching about, you know, the injustice of lack of access or some of the inequities of the medical system. And or say, for example, the complexity of lived experience. And some of the time, I need and want that. Like some of the time, it is necessary to see our experiences reflected and to understand how oppression works. Art shines light on oppression. And that’s necessary. But that isn’t all that art can be. And the place that we are at the moment is that art having to do with disability is made, a lot of the time, to educate the non-disabled world. I want insider art. I don’t want educator art, art to transform others. I want work that challenges me to provoke me to think differently about the community of disability and the culture of disability. Say, for example, you made a work about pain, right? You could make a work that says one thing to a non-disabled audience about the nature of pain. But if you made a complicated work, you can make a work that speaks to the internal community conversation about pain. And that’s what interests me, right? Because that is work that is made for us. And the fact of work being made for us that does not necessarily educate people outside the community is a big, big shift in disabled cultural production. And so, that’s what I’m talking about. I don’t need work that reminds people that disabled people have value. Hell, I know that!
And I’m taking this really from Toni Morrison in part, who, when I found this address, it really solidified for me and gave framing and context for me around what art can be. Now, in some ways, my reading of it is sort of a limited, sort of limited reading, because Toni Morrison then does go on to talk about how art affects social change. But there’s a moment in it where she talks about the function of racism. And the function of racism is that it keeps you from doing your work. It keeps you from explaining over and over again why you have value, why your culture has value. And so, she keeps pointing out that, you know, sometimes racism is aimed at language, and so you prove that you have language. And then sometimes racism is prove at history, so you prove you have history. Sometimes racism is prove that you have no culture, so you prove. And so, all of this time you spend justifying according to these frameworks and contexts that are shaped from the outside world.
And so, a lot of disability art and art by disabled artists—oh, so, I’m gonna say art by disabled artists ‘cause I’m gonna actually reserve the term “disability art” for a different genre of production—a lot of art made by disabled artists exist in the interpretive contexts that established by the non-disabled world and justifies and explains the presence such that the non-disabled viewer can have a transformative experience coming into it. We need work like that. But it cannot be the only work that exists. And too often, galleries, theaters, film festivals, those who have a gateways, have focused on sharing this kind of work and not the other kind of work. And so, my interest and my practice in the context of disability art, which I think of as work made by disabled artists situated in intersectional disability art and culture and aesthetics, I think of it as featuring disabled artists. And I think of disability art as imagining, first and foremost, a disabled audience.
JILL: I think right there, that last part of it expects a disabled audience. And I’m curious, you were part of the Recording Crip Tech exhibition, wondering if that’s how that fits into what you’re talking about now.
ALICE: I think that was very much a part of the world that we’re thinking about. All of our work—my work solo, Kinetic Light’s work as an ensemble, it looks at things that are thought of as technologies as not as devices, but as technologies in a different way: as ways of knowing. Like a technic is a knowledge, in its original Greek form. A technic is a knowledge. It’s a particular kind of knowledge and craft. But these are things about ways of knowing the world. And so, the relationship of disability and technology is complicated, right? We are both last to receive access to technologies, but first test technologies [chuckles] in the way that they are designed around. And technologies both facilitate participation in the world, but they often facilitate participation, normative participation, in the world versus disability or some would call crip participation in the world. So, yeah, it’s complicated. It’s complicated. Does that make sense?
CHRIS: It does. Yeah, no. It makes sense as much as it should make sense. I kinda like when it doesn’t make sense. And I actually like the concept of sense making within the conversation that we’re having right now, is because there are times in which the art that disabled artists do elevates audiences into new realms of understanding. And that’s really powerful stuff. We’ve seen it with Drag Syndrome most recently.
ALICE: Oh, yeah! Ah!
CHRIS: Yeah, yeah, yeah! Right. So, Drag Syndrome happens, and there’s this whole understanding, this sort of normative understanding. [chuckles] Don’t forget, we’re in Grand Rapids, Michigan, right? Conservative, Christian environment-ish, right, Jill? Yeah.
JILL: I like to think that there’s pockets of people who are not. We have a mixed Grand Rapids, clearly.
CHRIS: Mmhmm. Yeah. It’s an interesting place because a lot of the money is conservative money, but there’s a lot of innovation happening in Grand Rapids as well. And so, it’s a clash of, it’s a clash of commerce and innovation. Anyway. So, we bring Drag Syndrome into that neighborhood. And, you know, there’s this model expectation of gender, expectation of sexuality, and then expectations of people with developmental or intellectual disabilities. And you have all that sort of pressure on this performance. And I’ve never felt this before in a performance, but there was a reframing of the disabled aesthetic within the performance itself. So, people who were disabled were feeling something very, very deeply. And non-disabled people, as far as I can tell, were also very deeply affected. I mean, we have surveys and things that we’ve had feedback from. I’m really interested in disability art events having multiple layers of experience and multiple layers of meaning.
CHRIS: And whether you’re open to that element in your own work, I mean, and this is the hard part. During Drag Syndrome, we also had people interpreting the performance as, “Isn’t that really special? And isn’t that amazing? And oh, my gosh. I can’t believe they’re dancing.” Do you know what I mean? Like there’s the potential, in anytime an artist performs, there’s always a potential of different interpretation, right? Mmhmm.
ALICE: Let’s differentiate between making and interpreting.
CHRIS: Sure. Sure.
ALICE: Interpreting is the right of interpreter. And what you get out of a work is what you bring to the work and where you stand in the work and what you know and what your intellectual framings and emotional histories are. And each one of those is your experience, and you know, as an artist, you can’t control interpretation. You can’t. But there is a difference between interpretive practice and making. When making, right, you can choose how you cut craft and present and look at. Now, it might be that the interpreter gets it or not. And so, with my work, even if you don’t get the insider conversations that are happening, it’s still a work that happens, right? And it’s a work that you can like or dislike, you can be deeply moved by or not. It can work for you or not. But it is to say that there are layers of the work that have different significance depending on your position to and relationship to disability culture. And that, I think, is important that the interpreting and making are not the same thing.
And so, you can be aware of interpretation, and you should be maybe aware of interpretive practice as you make. But then you can make conscious decisions and be intentional. Like I know, for example, that X reads as Y within mainstream non-disabled culture. Do I want to have that in the work? Do I want to take that risk? Yes, because I also know that within disability culture it has this meaning, and it’s part of a different conversation. No, I don’t wanna go there. Making and interpreting or always in conversation with each other, no doubt. But making, interpreting, and imagining audiences are different practices.
And I love the idea that we’re having a conversation about sense making because that is so rich. And I’m glad! A piece of art should not make sense at first, right? A piece of art should sit in your stomach for a long time or sit in your heart for a long time or sit in your head for a long time. And I want that for my work and for Kinetic Light’s work. Yeah. Yeah.
[gentle electronic music break]
JILL: Chris and I were talking and watching the recent video you created of you in your neighbor’s tree.
ALICE: [thrilled laughter]
JILL: And I’m just wondering. And I love how you talk about the different layers of who make sense of what. I was wondering if you could describe that work.
ALICE: Oh, man! Thank you for dignifying it with the word “work.” You know, I’m thinking of it really as a kind of, it’s not even a work in some words. It’s just a moment. You know, the tree is stunning. The tree is one of those which you call them heritage trees. Yeah. And so, I’ve been itching to get into that tree for a long time. Long, long, long, long, long time! And this felt like the time to do it! This felt like the time to do it.
JILL: Well, when you put it on the #QuarantineShorts, for me, it takes it from a moment into something more that’s more of a collective experience.
ALICE: Mm! Mm. You know, the tree matters to me as a work, in some ways, because I’m thinking of like what is in my home environment that generates movement? You know, when I’m not in a studio, where am I? I think overall, I love putting myself in my chair in places that people don’t expect to see it. [laughs] You know, it’ll be like! Yeah! I enjoy the physical, the physical experience of these environments that are not fully supportive. You know, I’m perfectly safe, but I don’t feel perfectly safe. But that’s something that I think interests me. I enjoy that.
CHRIS: You’re leaning back on this oak tree, in your chair. And for those of us in the community, for disabled culture, right, this moment or this piece or whatever it is evokes so much. For me, it was about, she’s saying that there’s a sort of acceptance of nature.
CHRIS: Acceptance of what the hell? We have nothing, you know, no control over.
CHRIS: A sort of acceptance. And I think it’s very significant within the pandemic context, right? And so, I feel all that stuff. An able-bodied person, maybe, right, would also get that. But they would also perhaps get this feeling: How the hell did she get her chair up there?
ALICE: [huge, enthusiastic laugh]
CHRIS: Right? And I tend to love both questions. I tend to love the interpretation of the insider who says, you know, this is about an inner dynamic of disability that I and only other disabled people traverse. And I understand that. But I also love the question and the curiosity of man, that’s fuckin’ awesome! Like, how did she do that? Or, you know, or the people who are like, wow. And that’s all they care about, right, is how you got up there, right?
JILL: I’m not a wheelchair user, but I felt that process of what it took to say, hey, this looks like a lot of fun, or this is gonna be something more serious or, you know, like I wanna know all that context of what type of relationship do you have with the person who’s there with you?
ALICE: [delighted laugh]
JILL: And we talk about interdependence. We talk about connectivity. And you’re connected with nature. So, to me, there’s so much more that’s not being told in that moment. And that’s what I get curious about.
ALICE: Right. So, I’m gonna dig in to that. The tree, I hope, will eventually be a longer film. And I hope that Laurel and I will make a Kinetic Light film, and we’ll be able to be in that tree wholly, fully, richly in all of the ways. There’s a question really of what is the access to the outside, you know? Where are the trails? Where are the paths? How do we move in the outdoor space? And I feel that keenly. And so, I’m grateful to activists like Bonnie Lewkowicz for her work on access and trails in the Bay and beyond. And I think the question of the outdoors is really a big one for me. It’s one of the reasons why I ride horses, because horses can go where I cannot go, you know. And so, my idea of an ideal retirement is actually on a beach with a horse, and I can ride my horse into the ocean.
And I’ve had several experiences of being able to do that. And there’s an amazing moment when, you know, the horse is in the water. And the horse will resist the waves and resist the power of the waves. And then finally, there’s a moment where the horse just says, OK, fine. We’re gonna go swim. [chuckles] And then that moment of buoyancy, that is like nothing on earth when the horse just kind of. I think horses don’t much like swimming, but they can. And so, choosing, in those moments, to be one with it is really beautiful. And that experience, to me, I find transformative. It has been transformative for me. So, there is the question of how do we access nature? How do we access the outdoors?
And I think there is this wonderful connection that is missing in that film, right, as it is shot. It is shot from underneath which makes the height look enormous! Actually, it’s not. [giggles] So, it’s an illusion of the camera. It’s shot as one person in a tree, which is typical of this genre of 19th century isolationism and nature and kind of, in particular, white male understanding of the relations of humans to nature. This is part of that emergence out of the Enlightenment into early American, 19th century American culture. That is a particular kind of Enlightenment, white male relationship to nature, white male non-disabled relationship to nature. And so, it is provocative to me to plant myself as [chuckling] a woman of color in a tree in my wheelchair. That provocation sits in tension with the kind of view of how man, mankind, humankind is written about in relationship to nature. So, that’s a provocation. And of course, as you point out, Jill, I didn’t get up there by myself! [laughing] No! [laughs a little longer] But yeah, some of that is, it’s an intentional absenting of, yeah.
CHRIS: No. Absolutely intentionality of it. Yeah, exactly. I kept thinking of Strange Fruit, too.
CHRIS: I mean, seriously! Billie Holiday and the whole idea of trees. And I mean, yeah, man. So, there in like two minutes, right?
CHRIS and ALICE: [laugh]
CHRIS: In two minutes, you have this rich tapestry of stuff, and it’s just, it was just so powerful. Yeah.
[gentle electronic music break]
ALICE: I’m having a blast, as it turns out. It’s so strange to me. I’m caught between this feeling of utter powerlessness to change the world and fear for my safety, which is minimal, massively for the safety of those around me. Because at some level, I recognize, you know, right now I’m OK. I’m in my house. I have heat. I have water. I have food right now. And I have my medical supplies. Right now, I’m in a position of extreme privilege. I’m OK. And that is, you know, I have to struggle with that. And as I should. As I should. Because there are so many of us who are not OK, who cannot say that. And so, you know, part of me is stuck here in this position of just fretting at the world. There is no way, there’s no intellectual way that I know to grasp this. And so, my mind is just going round and round and round and round! And I feel a tremendous amount of guilt and fear and worry. And, you know, is it appropriate to be doing something as ridiculous as making art in a tree or a bathtub?
CHRIS: Would you talk about that guilt more?
JILL: Also, I’d like to add, when we were viewing it, Chris, your reaction to being in a tree got to your experience of the pandemic right now.
CHRIS: Yeah. Yeah. I mean, maybe that’s a better way to do it, because when you talk about guilt and fear and worry, and Jill and I were talking about the tree before we called you. For me, I’m kinda scared of nature right now.
CHRIS: Like I’m intimidated by what’s outside my window. You know, my son and my wife and I, we live in this house. And my son is non-disabled, but he’s very scared about Dad and what Dad’s gonna get if Dad’s gonna get something. You know, as a guy with muscular dystrophy, what’s that about? And he hasn’t gone outside either. So, he and I are in this together. Like we’re looking outside and whatever. But for some, being outside has been their solution, right? Like Jill, right? And even my wife Lisa, too. Getting out, doing stuff. You know, maybe they’re not climbing into a tree and taking the movie, but they’re still going out and they’re doing stuff, right? And so, for me, I’m also quite angry at nature [chuckles] for this situation. So, it’s anger. It’s also intimidation about nature.
JILL: I experienced it differently. I see that connection. I saw it as connection and freedom and choice in a time where we don’t have a lot of free choice to leave our yards, right? Chris, you feel less freedom and choice to leave your house.
CHRIS: The guilt thing, OK?
ALICE: Right. Let’s deal with that, right?
CHRIS: Yeah, I wanna know what both of you think about that. I haven’t put my finger on it as guilt yet. But how do we talk about guilt and privilege?
ALICE: I think this, this is the work. And not just to talk about it, but to name it and then do something about it. There are a lot of pre-existing conversations about privilege. But the conversation for me matters not one whit unless we effect change. And so, for the moment, I can say I am personally OK, and others are not. And that my time is divided between effecting change as best as I can and doing stuff like getting into a tree or the bathtub or the fence or wherever it is, the hammock or wherever it is. And the disjuncture between those experiences is distressing. We know that art saves lives. We know that art is meaningful. And we know that many things are needed. And at various points, artists and activists and organizers refute the binary of unless you are feeding someone, you aren’t doing useful work. But even within refuting that binary, it is important to name and then work against the individual privilege and push that towards systemic change wherever possible.
I don’t know if being a tree is a symbol of hope or not or if it opens a sense of reconciliation and potential and joy or not. To me, the tree smelled damn good. You know, that tree is shedding moss. It is shedding bark. It is shedding earthiness. And the smell of it was amazing. Even as being in it was fun and a little scary, the smell of it was amazing. And so, I’ve been trying to watch the sunrise. I am acutely aware of the shadows that I see and the sunlight. I am really intensely like, really—I mean, I am surprised at myself—I am intensely interested in the fog. I mean, like [pppbbbttttt]. When the fog happens, I find myself like, I have to stop what I’m doing and watch the fog. And even when the fog is so close that I cannot see out, I’m fascinated by that. I am acutely aware of the sounds of the squirrels on the roof and the difference between the birds on the roof and the squirrels on the roof. And I’m acutely aware of how ignorant I am about nature. Oh, look! It’s a pretty thing with big wings. Really? That’s what you know about it? And yet, the pretty thing with big wings, as opposed to the pretty thing with little wings, is also giving me a real source of pleasure. There’s a pretty thing with big wings out there. The fog is gorgeous. The sunrise some days is pale, and some days is vivid and deep and intense.
CHRIS: And so, that becomes a way to think about what’s happening right now too, metaphorically, symbolically, aesthetically, right, to get back to where we started from. What has been your response or, you know, Alice, in terms of how people are talking about disability at this current moment and how disabled people are reacting and what you’re hearing from the community?
ALICE: You know, what people are doing. It’s what people are doing. People are working, working to save each other.
CHRIS: Yeah. In the people that we’ve been talking to, there’s been a good deal of hope that, from this moment of pandemic, that we are able to step forward in a different way, that we’ll be able to roll forward in a way that maybe preserves our community more or puts our community somewhere different than it has been. But there may not be that hope. What do you think about that?
ALICE: I’m not convinced. And in part, that’s because [heavy exhale] oh…. I don’t know how to,. I don’t know. You know, someone asked me this the other day. I’ll say what I said then, which is I don’t know how to imagine the future. There will be a bunch of newly-disabled people from this. Some will be disabled from an encounter with the virus because we don’t know what recovery means. The best I think we can say right now about recovery is that the acute stage of the illness passes. But we don’t know what that’s gonna look like in six months’ time, nine months’ time, a year’s time. So, there may well be people who are disabled from a direct encounter with the virus. And there will be disabled people who were disabled from living through and with the trauma of this. And I don’t think we know enough, I personally don’t know enough, to imagine the future for those of us who entered the pandemic with disabilities and those of us who will emerge from the pandemic with disabilities. I do you think the disability community has the language, the framings, and the context and know how to make the world better. I don’t know if we will be heard.
CHRIS: Well, I wanna resonate with not knowing what’s coming next, and that you’re fearful that we won’t be heard. I mean, I think that’s one of the reasons why we’re doing these conversations, right? But you put them out there, and you just hope for the best.
CHRIS: And you hope that somebody listens, somebody who needs to listen, you know? That’s all I can hope for, is that the person who needs to hear Jill and Alice and Chris talking—
CHRIS: Right? Like that person will hear that. Yeah. It’s so great to finally get a chance to sit and talk. And I know that on our side, what we are hopeful is a time when we can all do some work together, some collaborating and some good work together. Yeah. [gentle electronic music returns for a few moments] For sure.
ALICE: Yeah. Oooh!
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: “Echo Park” By Rest You Sleeping Giant. (Source: freemusicarchive.org. Licensed under a Attribution License.)