Podcast

Interview Date | April 16, 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 bouncy electronica]

CHRIS: Ahhh! There it is, Jill.

JILL: Yeah. I don’t know why neither of us are considered the host.

TERRY: [huge laugh]

JILL: So, we don’t have any control.

CHRIS: You know, it’s just, it’s—

TERRY: The coronavirus is the host. [laughs for ages]

CHRIS: Yeah. Yeah. Yeah. Typical. Disabled people getting screwed every other way.

TERRY: [finally pauses from laughing] Why are we laughing at this?

CHRIS: I don’t know!

TERRY: Because it’s so true!

JILL and TERRY: [chuckling]

JILL: Is there something we can do to make it more accessible for you?

TERRY: No. Actually, I thought it was gonna be just audio. With Zoom, I can read your lips.

CHRIS: Oh.

JILL: OK.

TERRY: And Donna is here just to help me if I screw up anything. One of my cochlears just stopped working. And so, I’m kind of wearing an old one, and that’s why I’m having trouble. Things are not quite as clear.

CHRIS: You know, Donna, we wanna include you as well. You know, we’re all here together. I hope that’s OK.

TERRY: Donna, would you like to introduce yourself first, sweetheart?

DONNA: Sure.

TERRY: OK. This is Donna.

DONNA: I’m Donna.

TERRY: [laughs] You undersell.

DONNA: Donna Marie Nudd. I tress the Nudd because when it gets mispronounced, it’s a nude or mud.

TERRY and DONNA: [laugh]

DONNA: So, I prefer the Nudd. My day job is I’m a professor at Florida State University, and I teach courses in Performance Studies and Queer Studies now and Gender Studies. And I’ve worked with Terry now for over—

TERRY: 40, 40 years.

DONNA: —40 years, something like that.

TERRY: Thirty-something.

DONNA: Yeah, in two capacities. Working with her on her solo shows, often in the capacity of dramaturg and director. And then we co-founded the Mickee Faust Club…ooh, over 30 years ago.

TERRY: 36 now.

DONNA: And for that, I serve as the Executive Director, and Terry serves as the Artistic Director.

TERRY: Yeah.

DONNA: That’s the short version.

TERRY: Yeah. And we’re married. [laughs]

DONNA: Ah, yeah. Yeah. I used to say, “My partner in art and life,” but then we got married.

TERRY: [chuckles]

DONNA: And so, “Wife in art and life” doesn’t quite work.

DONNA: [laughs] Yeah, it rhymes. It’s a little too cute.

TERRY and DONNA: [laugh]

TERRY: I’m Terry Galloway. And I do a lot of solo performance, and I’ve been doing it since 19- I don’t know. I’ve been doing it for a long time. Solo performance, and I also did…. Oh, I don’t really know how to introduce myself. I think that’s very funny. I’m used to saying I’m a mean little deaf queer kind of thing, you know. And that’s true. But I’ve been doing a whole lot of shows about, not about disability, but I always try to incorporate disability in everything I did, you know. Because it was such a part ,it was a central part of my life. And so many people spent time not talking about it, you know. And so, I thought, well, I wanna talk about it. So, I’ve been doing the solo shows, I don’t know, since the late ‘70s, early ‘80s. Before that, I did the cabarets and Shakespeare. I used to do particularly cross-dressing Shakespeare, which is my favorite thing to do. It was very, very fun. And also because I— Oh, I don’t know. I’m getting off onto tangents here.

But because one of the reasons I love doing Shakespeare is that my mentor at the time at Shakespeare at Winedale, I’d wanted to do theater. And I had actually gotten a scholarship to do theater at The University of Texas. But when I went in there with my little scholarship in hand, they told me I would not be allowed to perform and nor would I be allowed to direct because I was deaf, you know. And that had followed something that happened when I was in high school. After I had won this little scholarship, the guidance counselor there told me, when he was telling all of my friends, “Oh, go to Yale and go to Princeton, go there, he turned to me and he said, “Factory work make good job for deaf.” He gave me a brochure that said that. Errors and all. “Factory work make good job for deaf.” So, it was like a big, huge fuck you, you know? And when I walked out of there, I was saying, well, fuck you! So, one of the things I loved about Shakespeare is it was an English class, but they taught Shakespeare by performing. And he said, “Oh, it doesn’t matter.” I had deaf speak. It’s hard to remember how somebody sounds, really. But I had a lateral lisp, and I’ve had it from all my entire, well, I had it until I got my cochleas. He said, “Ah, it doesn’t matter, ‘cause nobody knows what Shakespeare sounds like anyway. Nobody really.” [laughs] Deaf speak!!! [laughs] Really smart, deaf speak, you know. There’s like, yay! [laughs]

Anyway, and also because often when I was touring or doing something as a solo performer, or if I was asked to, like I was asked to join the National Performance Network. And I remember going to one of their big meetings, and I was the only crip in the place. And then, they weren’t even classifying deafness as crip. [laughs] It was this, I was the token whatever. And they were lovely. They’d invited me in without understanding what that means. You know, they invite you in, but there’s no accommodation. So, how can you stay? They didn’t know. But Carla Peterson was wonderful. And ‘cause I walked out, and she came after me. And so, there were things like that. I started realizing there were other people like me out there that no one was seeing, no one was recognizing. And it made me feel sad, angry, and guilty. You know, I was getting lots of breaks that other people weren’t. Even though I could complain and bitch about it, about the breaks I was getting. I still realized that’s what was happening. That’s a really long-fucking-winded intro. [huge laugh]

Look, I’m Terry Galloway. I’m a deaf queer [laughs] performer. I do solo performance. And I co-founded the Mickee Faust Club with my wife, Donna Marie Nudd. And I play a gigantic foul-mouthed runt [laughs] onstage called Mickee Faust. That’s my introduction. [chuckles] Edit!

TERRY and CHRIS: [laugh]

JILL: No! I like the other one.

[bouncy electronic music break]

TERRY: Jill, it’s just, again, how lovely it is to see you guys. We’re just delighted to see you guys. OK!

CHRIS: A lot of the things you were saying were bringing up what some of our other guests have said. And we were talking to somebody a couple days ago who was talking about the constant performative nature of being disabled.

TERRY: Yes.

CHRIS: Yeah. I’m fascinated about how that has worked for both of you in your art and in your creativity. How do you balance this, the fact that when you’re onstage, you’re performing, but when you’re at the grocery store, you’re also performing?

TERRY: Chris, I wrote a thing called The Performance of Drowning because it’s about going to the Lions Camp for Crippled Children and being the odd one out in so many ways and then performing drowning so that I could get the attention of the deep end instructor. And also, because I was losing a race to two other kids, one who was vision impaired—in the vernacular of my time as a child—she was blind, and there was a one-legged girl. And they were beating me when they shouldn’t be beating me. And so, I pretended to drown in order [laughs] to avoid the humiliation of being beaten. So, it’s all about performance. It’s about the performance of disability and the performance of self.

What you just reminded me of, before I had the cochleas, ‘cause I’m still deaf. I take them off, and I’m deaf. You know, they go bad. I’m deaf. You know, there you go. OK. When I was receiving food stamps, you know, when I had food stamps, I was so humiliated by the fact that I had to because I had no employment—I was self-employed. I would go there—that I would perform my disability so that they would understand that I deserved the food. You know, I deserve to eat, [laughs] and I deserve this charity on their part, you know? So, I would accentuate everything about my deafness. Everything I could, I would accentuate. But you know, [speaks very slowly, with a lisp] how I would say things like this too, you know. And I performed the popular idea of deafness because I felt so embarrassed by needing…. What other choice did I have? What choice do I have? And so, that performance, Donnas knows of these. She’s seen some of these performances go on. Does anything come to mind, sweetheart?

DONNA: Well, I was also thinking about your question, Chris, because I’d said that I’m teaching Queer Studies.

TERRY: Yeah.

DONNA: The textbook is actually written by Bruce Henderson, who, after getting his doctorate in Performance Studies, he went and got a doctorate in Disability Studies.

TERRY: [laughs]

DONNA: And, you know, I love the thinking in there of the parallels, too, with people with invisible disabilities in terms of always coming out.

TERRY: Mmhmm.

DONNA: And just even when you even sort of said the grocery store, which seems like the most mundane thing.

TERRY: Uh-huh.

DONNA: But even in Terry’s sort of performance, as she’s going through, there was no ever assumption of deafness. But she’s so southern [chuckles] that she can’t bear not to be seen as polite. And so, when she’s not responding in the way, and so she then always kind of came out of being deaf and bonded. And then you know, “I’m so sorry,” is the automatic response.

TERRY: Mmhmm, mmhmm.

DONNA: And then she would sort of bond. And I’m kind of tickled now because now she says, “Oh, I have a cochlear,” [laughs] when she’s not getting it. And I really think 90% of the people don’t know what a cochlear implant is.

TERRY: [laughs]

DONNA: But somehow, it works as a kind of coming out for Terry. [laughs briefly as Terry’s still laughing]

TERRY: I’ll never forget this, when you talk about the “I’m sorry.” Because that was my, always my default position. You know, I would always be apologizing. Like Donna said, of course, I’m oblivious. I was oblivious to somebody talking behind me or somebody talking to me. And like she said, I have horror of being mean or rude, you know, or being perceived that way. I don’t mind being really mean or rude when I think the people fucking deserve it. But I have a horror of accidentally being that thing. And I remembered when Carrie Sandahl was living here and teaching at FSU, and also she came in and was part of the Mickee Faust Club, too. And we did a lot of things together. But one of the things I’ll never forget is that, she’s younger than I am by it, like a decade, I think. And she helped me change my vocabulary because she noticed that I was apologizing all the time for nothing. You know, that’s another default crip position. You apologize constantly for everything, you know, because you’re apologizing for your very existence. And she called me on it. And she made me aware that I was doing this. One of the things I loved about being with Carrie particularly at that time, is because we were both involved in women’s, what’s it called now, the part of the ATHE women. It’s not Women’s Project? It’s that women’s project.

DONNA: Oh. Women in theater?

TERRY: Women in theater. The Women in Theater part of ATHE. We were both a part of that. Donna was a part of that. She got before I did. And we were talking about that, about the language being used and how we had to, ourselves, start being more aggressively, positively self-referential, you know. We had to change our vocabulary about ourselves. And I love that.

CHRIS: I know Bruce Henderson very well. What I love about what he’s been able to do is reach into those vocabularies of Gender Studies and some of that critical theory of like Judith Butler and to be able to bring that into the disability world in a way that’s really authentic. I think it’s awesome.

DONNA: Yeah. He writes in such an accessible way. He translates a lot of jargon, academic jargon, theoretical jargon in a way that gets students, I think in particular, very excited about the ideas.

TERRY: Yes. Yes. We love his book. Donna read it and wrote a blurb for it and then said she wanted to teach it.

[bouncy electronic music break]

CHRIS: I think one of the things, too, that excites us about this project is, in a time where emotion and logic and exhaustion and all these things are swimming together in a way that they’ve never done before. I mean, honestly, you know, yesterday, I had to stop. My body just stopped working. It was really cold here. And I laid in bed, and I’m kicking myself. And I’m like, why am I so upset right now? And it’s because we are in this mode where we’re like, we’re doing, doing, doing, doing. And we don’t really know why we’re doing it.

TERRY: And we don’t really know why.

DONNA: Yeah.

CHRIS: Yeah, yeah. It’s just yeah, I think we’re all in this hub of uncertainty. Yeah.

DONNA: We did a narrative project actually when Carrie Sandahl was here about people with disabilities in times of crisis. But those were always stories, you know, five years ago or ten years ago. And so, there was that kind of distant reflection on it, which is very different than being in the moment.

TERRY: Mmhmm. Because one of the things I think that’s a realization: I remember reading from Liz Carr, one of her postings was about getting a letter about, we want you to sign this so that other people who have more of a chance to live can have the ventilators. And you can just kind of go drown in your own juices, pretty much that. And it’s making so clear how dispensable people regard guide people with disabilities, how dispensable we are. The epicenter of the coronavirus, the COVID-19 thing here in Leon County, is at the center for adults with disabilities. It’s just sweeping through the center. It’s almost something like 71 out of 103 cases are there. And it’s becoming so evident now, this disregard, you know, particularly even those people who pretend to cherish and value life so much. You know, I think, oh, fuck you. Then value it, you know? And Donna and I were talking about that because she’s, in her Queer Studies course, these kids are very vulnerable, too. And there’s only one Queer Studies course in this university, if you can believe it, and she’s teaching it. And these kids, we were talking about how important it is for them now, particularly now, for them to have their stories.

So, she’s doing the same kind of narrative project with them for their class and how it validates them when they’re feeling their mortality in a way that a lot of people I know with disabilities having, not Crip Camp, because it was the Lion’s Camp for Crippled Children, which is a whole different ballgame, but nonetheless, there was a realization among a lot of us, even as children, one, about that vulnerability and two, about how dispensable we were. You know, it makes you different. Your relationship to life, you know, to all of these little things that, the pretenses and the rituals that surround living, it’s a different relationship. And it’s interesting to me that all of that seems to be coming out now because this is a massive, worldwide, in-your-face reckoning, in a weird, weird, weird way with our own mortality. Yeah.

[chill electronic music break]

JILL: I think that’s why we feel the sense of urgency. Chris, you were saying you needed a physical break, but I think it also needed to be a mental break.

TERRY: Mmhmm.

JILL: Because there is both, our spouses of have said, “Why do you have to keep working so much?” And I hadn’t thought about it. It just feels there’s this sense of urgency to capture the frustration, the anger, the realness of how disabled people feel in our world. And not just in Grand Rapids or Michigan or Florida, but across the world, the sentiment is the same. The circumstances change, but the sentiment of being disposable is coming out loud and clear. And this pandemic has really brought that to a head.

TERRY: But Jill, it’s a real urgency in facing this or seeing this and seeing other people face it. I sometimes think some of those urgencies I had in the past that so exhausted me, that kept me running and things were somehow made up. You know, ‘cause I’m looking at this and I’m thinking, I don’t wanna do one thing except to talk to people. And I don’t really feel like making art. I don’t really feel like doing any of it. I just, I wanna sit tight and think and talk to other people about what they’re thinking, you know. And then maybe I’ll feel like doing something. I just, I do and I don’t. But I think it’s a weird thing because it’s distilling. It’s distilling. And it seems like if there’s something urgent, then it’s a real urgency, as opposed to one that I would layer upon myself so I could be busy, you know. So, that’s something that’s happened at the same time. I would just, I would feel so overwhelmed with terror and dread that all I wanted to do was sleep, you know. And so, these conversations are kind of what’s keeping me well. That and Donna and my sister, who is also sheltering in place with us and Faust too. I have to say Faust too. But it’s keeping me from just hating the world, hating the mess that we’re in, because the kind of things you’re saying, that Chris is saying, that Donna saying, it makes me think, huh? We’re getting somewhere. You know, we’re really getting somewhere.

DONNA: In my performance class I was teaching, well, obviously live, it’s for a performance class. And so, when it shifted to online teaching, you have to sort of really shift assignments for them to work. And so, I was very much thinking, OK, how can I make these assignments relevant for the time and doable, etc.? One of the first ones I did was changing the assignments so that students could look at personal narratives about the coronavirus. And within a couple of days, I got an email from a student who basically pleaded for me to write an alternative assignment. Because she just felt like every time she opened an email, it was that, that, that, that. She turned on the TV. It was that, that, that.

TERRY: Yeah.

DONNA: And so, she wanted a distraction assignment. And I thought, fair enough!

TERRY: Yeah. [laughs]

DONNA: You know? Fair enough. When I think of our lives, I think there is that kind of powerlessness we all feel as we sort of watch the news and the horror about a range of populations that are just in horrific positions. And I can’t help but feel how much privilege I have in so many, many ways. And just so sad. So, anyway, like you guys, working, for me, is the distraction, I think.

TERRY: Mmhmm.

DONNA: Oh, and our company, I think, is also something that we need to talk briefly about. We had a major cabaret for the spring. And so, six weeks of writing, six weeks of rehearsal. And it was the final dress rehearsal when this was just a call kind of needed to be made. People were getting sort of a little bit nervous. And I wasn’t involved in it, this particular one, ‘cause I had a harried semester. And Terry said, “Donna, you need to be here tonight.” Our financial person, “You need to be here tonight.” And so, we assembled the entire sort of cast and crew and talked for about an hour as to whether to do the show or not. And the conversation watching it was about kind of 50/50 in the sense of most people kind of wanted to hedge the bets and do it the first weekend, because they’d been working so hard, and then make the call. And so, people were making different kinds of arguments. Some saying, “All the people we hate are telling us it’s no big thing. And the people [laughs] we trust our saying, get your act together and be aware.” And then there was this couple that’s in the company. And I’m gonna, I’ll let Terry pick up the story from here.

TERRY: OK. I don’t know if you guys know this, but we got a grant to hire five people to work part-time for Faust, four of them, people with disabilities. It had originally been three. But we have people with disabilities who are doing volunteer work. And so, we thought they deserve some money ‘cause most of them are on SSI. And, you know, there are limits to what they can make, but still. But then they had like five, six people who applied. And so, we said, no, we’re gonna expand the parameters of this ‘cause we want to get as many people as we can employed. So, we did. We got five people. Two of the people are a couple. They met at Faust, and they married in Faust on May 4th because they’re big Star Wars fans, OK. [laughs] May the 4th be with you. And I was dressed as Mickey Faust, the big, there’s a guy—

DONNA: And one of them’s named Luke. [chuckles]

TERRY: Yeah! Luke! [laughs] But I wanna give you just a background, some background information on why this becomes important only and why his wife said what she said at the end of this meeting. OK. When Luke was a teen— And they talk about this all the time. He and his mother are very public about it. His mother wrote a piece about this that was done at Faust, for which he did the sound effects, including a gunshot.

DONNA: And I wanna make him do a TED Talk.

TERRY: Yes. OK. A gunshot sound. Because when he was about 19 years old, he was filled with despair, and he shot himself in the face. And he survived. And so, it was, of course, incredibly traumatic and terrifying. But he always refers to that is his real birthday. He said that whatever it did, he felt he began to come to terms with himself, you know, who he was and how he was. So, but for a long time, he didn’t go out. He didn’t socialize. And then he heard about Faust and that we needed a sound person. And he had been a sound person, so he joined Faust. That’s Luke. OK.

And Zan. Zan, when she was but a fetus, [chuckles] when she was being born, she was a breech baby. And the obstetrician became impatient and yanked her out of her mother’s womb, caught her chin on her mother’s cervix. And so, she’s been kind of semi-quadriplegic since she was a baby. So, she joined Faust, and they met. And when they were actually doing sound, and she does our captioning. She runs our captioning—

DONNA: And performs.

TERRY: Yeah. And performs sometimes and directs for Faust. And they met during one of our Queer as Foust things when they were working on the sound, and they fell in love. So, they’re married. And they were both at this meeting of course, because we have other people with CP. We have other people with MS and people with some things that leave them extremely vulnerable. And these people we’re not really speaking up about their own health. But she spoke up for him. And she said, “I want you guys to know that his doctor told him on no uncertain terms, that he should not be doing something like this. He should not be doing the sound for this kind of thing.”

DONNA: He shouldn’t.

TERRY: “He shouldn’t be exposing himself to this.” And he wasn’t gonna. So, when she said this, it had been like 50/50. And we had children. There were children from 6 to 14 in the show. And of course, those kids really, really wanted to be a part of the show and still did really. Because, you know, they’re not as vulnerable to the coronavirus as we were supposing. So, the minute she said that, the sentiment in the room just shifted. [snaps fingers]

DONNA: Completely shifted.

TERRY: Yeah.

DONNA: It was like no one’s gonna put Luke in a vulnerable position.

TERRY: No, and then we realized—

DONNA: But we were also, later, Luke sort of said, you know, well, reporting the story, “Why are you singling me out?” [chuckles] And in a way, he was right. Because also, we were kind of oblivious at the time of how many people over 60—

TERRY: Yeah! [laughs]

DONNA: —were in that company.

TERRY: How many people with diabetes.

DONNA: How many extremely heavy smokers. [laughs]

TERRY: Yeah, yeah. Some with lung disease. I mean, we had, we were looking around. We thought, oh, my god! We have every kind of disability here. Every kind of thing makes people vulnerable, and people were gonna, “Yes! Let’s put on a show!” And they were going, “My god! [laughing] We almost killed everyone in the cast!!” So, then the kids, of course, wanted to go on with the show. But they didn’t know. But we were very proud of them.

The other thing that’s interesting, it’s Zan and Luke and a young woman named Sam who has multiple personality disorder. Those three in particular are the ones who are keeping us afloat now. They’re the ones who are looking in and helping us get things online. They’re the ones who are teaching other people their technical expertise. Because we have members in varying socio-economic places in life, and some don’t have easy access. And so, we’re trying to figure out how do we get them into this? If we’re gonna go online, how do we continue to be inclusive? You know, if you have people who go to the library to get online, what do you do? That group, they are the ones who are saving us. They’re the ones who are saving us. And I love it, you know? I love it. ‘Cause I think, yeah! [laughs, then yells] “The disabled ride again!” [laughs] “We’re gonna fuckin’ show ‘em!!!” [laughs] We’re gonna make you be grateful to us to the end of the days, I swear to God!

DONNA: Our first priority was making sure that our part-timers had their hours and were still getting money.

TERRY: Yeah.

DONNA: Because working with Faust is such an important part of identities. And it’s working in amazing, wonderful ways. But the other, sadder part of it, too, was the other thing we shifted to was actually 9 zillion people have keys to our theater.

TERRY: Yeah.

DONNA: And so, there was a degree of oh, we’ve gotta now protect our space.

TERRY: Yeah, and the people who go into it.

DONNA: And so, a space that was such a community, incredible space. And we had to kind of protect it.

TERRY: But what was also interesting is because we do have so many vulnerable people. So, they started a kind of a more informal network. So, people are checking in. They’re doing it almost like a buddy system. People are checking in on each other, making sure. They’re just people who cannot be out. One of them, Casey. Casey has CP. And I love Casey because when Casey was younger, she identified as she. And now that she’s older, she Casey identifies as he. But when Casey was younger and identified as she, her mother used to take her everywhere. You know, she picked her up, and she put her in things. And she did this until one day the occupational therapist, the OT, said to her mother, “And what does she do when your dead?” And he said, “She’s not gonna know how to do a damn thing.” And so, Casey’s mother started not doing everything. And so, as a consequence, Casey developed muscles in his arms. [laughs] It’s like Popeye! Casey can lift himself anywhere.

But he is uniquely isolated in a way because it lives in, is it called Section 8 housing? I’m not sure what it’s called in Florida. And because the buses aren’t running that way anymore. They’re not picking up people anymore. So, Casey is kind of uniquely isolated out there, you know, out there. But what I loved about that is that Casey went onto the Faust thing and said, “I’m uniquely isolated. And usually, I don’t mind being alone ‘cause I’m an introvert, but somebody pay attention. You know, I need some visits. I need some conversation. So, talk to me, you know, and help me.” And I love that. I love that. And I worry that there are people out there who aren’t doing that. But again, we have these pleads when we’re saying, “Do you need help? Do you want. Do want brownies? [chuckles] Do you want marijuana? What do you want? What do you need? What can we give you? How can we do a drive by?” You know, I’m proud of Faust in that way. I’m proud of how Faust is working. And to me, that’s that that great disability ethos. You know, that’s the ethic of accommodation right there.

[sweet electronic music break]

CHRIS: I don’t know about you, where you’re at, Jill, but I oscillate between being hopeful that some of that ethos will become desirable by other people, right? But then I’m also very fearful. Jill, we’ve heard both of those reactions from our interviewees: that the modality of disability—and this is the way that we’re putting it—but that the modality of disability becomes something that people can learn from and even aspire to on one hand. Or on the other hand, that it goes back to, “normal,” and we’re still the disposable culture that we’ve always been. Yeah. We go back and forth between that.

TERRY: Look, I’m a very skeptical, negative little person, OK? I like my toast dark. I just am that kind of person. But weirdly, I feel hopeful. Because I think so much of what we have recognized and articulated as the disability ethos has already been incorporated into progressive thought. I don’t care if you’re a center Democrat, it’s still in there. You know, it’s there. It’s the driving force now. It’s not the marginal. It’s the driving force. Because you’re talking about even if the universal healthcare doesn’t happen, what we’re seeing in this horrible disaster that is the fucking Trump administration is that, one of the things that we’re seeing is that there’s total disregard for life. You know, capitalism over lives. Making a fast buck over saving a life. There’s an abhorrence, in a huge percentage of the population, there’s an abhorrence.

And you know what? Always in disability, I always felt, well, just personally, that in order to survive, I had to make myself be lovable. I had to somehow convince people to love me so that they would help me stay alive. And the lovability factor, the approachability factor. Or to fight them tooth and nail, whichever one, if it’s like one or the other, one or the other. I feel like there’s turmoil, and I don’t know. But this fight for progressivism, even with this Trump administration, I still see this big turn. And look. I keep thinking, when I was a child, I was supposed to be destined for the trash heap of history. [chuckles] That’s how people always looked at children, except their parents and those with an ounce of compassion. And there didn’t seem to be that many of those in the world. But I think there are more and more of those in the world and more and more and more of us who have experienced this kind of disregard and this kind of sneering kind of dispensability. We’ve experienced it. We are articulating it. We’re fighting it. We’re living it. And we’re also just fucking enjoying ourselves in life. And I think that that’s hopeful.

There’s a part of me that I cannot help but to feel hopeful. And I think, yes, it’s all going to fucking hell. And you know what? I’m not glad. But I thought it was inevitable with that kind of president, with that kind of turn to the world. It was inevitable! It was inevitable. And I think people who didn’t think it was inevitable, who were hedging their bets, I think now they are seeing with this crisis and with this crisis of leadership across the board, you hope that this majority of people who are good at heart will denounce that. You know, that’s what I hope. Because there was Sanders going out of race. It seems like all the progressive values are going, but they aren’t. You know, they aren’t. We have a candidate who is going to choose a woman to be vice president, who is going, who is already going to the Left there.

DONNA: I also think that Terry always expected it.

TERRY: [chuckles]

DONNA: You know? I mean, I think from growing up in post-war Germany, through her deafness. And you look at her solo shows, the nervous breakdown in terms of thinking about nuclear annihilation, you know.

TERRY: Annihilation period. [chuckles]

DONNA: So, I think Terry just always expected it. And there is something that now it’s, well, here it is. I mean, I mean—

TERRY: Accidental annihilation. Accidental annihilation. We’re coming face to face again with our own mortality, you know, in the most sweeping, unbelievable way. You guys are right. The disability community has so much to teach the world about that, because that’s something people, we were facing every single day of our lives. And we have managed. We’re not shrinking around. I got a great life. You’ve got a great life. I could look at people’s lives and go oh my god! How hard can you be? But you look further, and you see happiness. And you see purpose. And you see an absolute sense of self value. So, I don’t think that’s going anywhere. So, don’t feel hopeful. Hopeful really doesn’t do good. But feel fierce and joyful, you know. ‘Cause great. We get to fucking fight! [laughs] And we’ve got something to fight for. And it’s a fun fight. You know, I know it doesn’t seem it, but I’m talking to you. I’m talking to Chris. We’re talking to people in Texas that we’re working with. We talk to our art community. And there to fierceness to it. There’s a real joy.

CHRIS: I agree. I’ll speak for myself, but I think there is a joy in the work, and there is a joy that no matter how hard it seems or whatever, Jill and I still wake up and get on this computer and just do it because there is joy. And there’s hearing the stories of our people, it’s heavy, but it’s also life giving. It’s life giving.

TERRY: It’s life giving. And Chris, ‘cause these stories, to share that when you hear them, it’s wonderful. It’s like a jolt of realization with every single story. And I go away happy. Happy. And, you know, I talk to my sister. My sister, she’s 76, and she just moved here three weeks ago [chuckles] from Texas, just under the wire. So, and we were talking about this because my sister is so funny and wonderful. And I fear every day. She’s in a demographic. But then Donna’s in a demographic. I’m in a demographic. And, you know, what’s the demographic, though? You know, what’s the demographic? Who even knows anymore? We’re all in that demographic, you know? Anyway, I’m glad you said that, sweetheart. I’m glad you said that, because it gives other people joy, too. So, it’s not just the selfish gene, you know. Or that is the selfish gene in that you wanna make yourself happy. And it makes other people happy, too! And [laughs] so great. Everybody wins! It’s like being a cat. [laughs]

TERRY: I wanna tell you another thing, too, is that we’ve been doing a lot of teleconferencing, and it’s been just lovely. And one of the things that yesterday, I think I told you guys this, in Austin, a group called LOLA (Local Opera with Local Artists), they’re transforming my solo show, Lardo Weeping into an opera, a chamber opera. And we actually got to see the first 20 minutes of it last summer. And it’s beautiful. It’s a mezzo soprano. They have a cellist, a violinist, a pianist. They have two other mezzo sopranos and an alto. They had a woman who is a performance artist dancer who did the Dance of the Dodo, ‘cause there’s a piece in there about the dodo, the extinction of the dodo. It’s very funny. And this is a piece that it’s kind of the most, I guess, the most sublimely autobiographical. I wear a body suit. It comes apart in strips for a little striptease. Because she hates her body. And at the end, she just full. She fights for it, and she’s full of self-loathing. So, she rips it apart. And then she puts herself back together again and goes on. We were talking about this and talking about some of the language in the music.

And of course, to me, this is miraculous because I wrote this book when I was Deaf. And now I have these cochlear implants, and I can hear this music. And it’s like. [gasps, then laughs] And he has not changed a word. He’s had to cut. I was Deaf when I wrote it, and it was lyrical musical. And I’m just going, oh [screaming] the disabled ride again!!!! But that’s not the point of the story. I’m so full of vengeance, Chris. [laughs] But my sister was listening from the back room, and all she could hear were the peals of laughter. And she was saying how wonderful it made her feel. And so, laughing with you guys too is just, I keep think, oh, my sister’s hearing this. I love it. I love you, Chris. I love you. What were you gonna say?

DONNA: Oh, I was just going to say that that particular opera, one wishes it was done because it would be great in this world right now ‘cause it features an outspoken feminist agoraphobe.

TERRY and DONNA: [laugh]

TERRY: She never answers her door unarmed. [laughs] She sends crank emails and crank letters everywhere. It’s actually a perfect piece. It’s a perfect piece for isolation. It’s just very funny.

DONNA: But we were all sort of tempted to cut this really complex poem that, again, is about the fate of the world.

TERRY: The fate of the Earth.

DONNA: And was like, well, we can shorten it, but we can’t cut it.

TERRY and DONNA: [laugh]

DONNA: But I think it was that distraction, too, you know.

TERRY: Yeah. Yeah. Yeah. It’s that way.

[bouncy electronic music break]

JILL: You both use humor and laughter as part of your life. Chris wasn’t able to be part of this conversation yesterday with the woman I was interviewing from the UK. And silver lining for her experience is that she’s living with her immediate family, so both her parents, her brother and herself. They’ve just had this really difficult 10 maybe plus years, right? And she said since they’ve been sheltering in place, they found their laughter again as a family.

TERRY: Oh!

JILL: And she says, “We haven’t laughed in probably 10 years.” And I just thought laughter’s so much a part of your life that you would appreciate that.

TERRY: Oh, I love it. I love it. And we’ve been hearing from people again. Well, you know, you’re gonna have the extremes. You’re gonna have the families who, they love each other. And all of a sudden, they have this time to find out who they are again. You know, all the time in the world, it seems, if they care to. And then, of course, we have the horrible and abusive families that are out there. But it’s just like the domestic abuse, think about that. That it used to happen without any language. It used to happen under wraps. And now it’s out there.

My sister, when she was driving here from Texas and just missed the coronavirus lockdown through Louisiana, she was dropping off a young girl in South Carolina who talked to her very articulately about the fact that her father had abused her, this young girl, when she was very little in this very poor South Carolina family. And this girl has learning difficulties. And the language she used was so eloquent and perfect. And so, I thought, how far that has come, that the people who are the victims of this now have language to use. So, it puts it in its place, and it gets them away from it. So, that makes me feel hopeful, you know, that we’re refining our language as individuals and as a species. And I’m a firm believer in language, all kinds. You know, laughter’s its own language.

CHRIS: There’s the language of disability, not the language that Paul Longmore talked about.

TERRY: [laughs]

CHRIS: You know, “Don’t say cripple. Don’t say,” you know, that that kind of stuff.

TERRY: Yeah.

CHRIS: But when the language of interdependence, when the language of vulnerability, when the language of just relational importance, when those languages start getting used by more of us, then again, I’m hopeful. I’m hopeful that those languages that make so much sense to our community, that if they can begin to make sense for other communities, in the same way. Yeah, that would be great.

TERRY: I hope so, Chris. And I hope so for myself, too, because I’m a vengeful person. You know, I love vengeance. I just do. And there’s a part of me that, every time some minister who said, “Oh, God’s gonna protect me from coronavirus” gets the coronavirus and dies, I just rejoice. I just ha ha ha, you fucker. You know, or the villages. I mean, I make, some of my Facebook posts so mean because I’m really wishing death on these people because they’ve annoyed me. [laughs] But also not just that, but by their stupidity, they’re putting the rest of us in such danger. And so, I’m really vengeful. And I’m trying to get a better line drawn here because I need this sense of vengeance. I wanna smite the stupidity, and I wanna smite the enemy. I wanna figure out the language of how to address it so that it changes rather than just punishes. ‘Cause I just wanna punish, punish, punish. And I just think, what’s the point? And I’m gonna change.

DONNA: I think it’s just that you always wanna call out the bullies.

TERRY: I hate the fucking bullies. You know, I’m beginning to call people out as bullies who might not be as bullying as I think. They might just be stupid little sheep or something. I gotta, I’m still trying to figure it out. Still trying to figure it out.

DONNA: And I try not to read her Facebook posts.

TERRY and DONNA: [laugh]

JILL: Have you unfriended her or unfollowed her?

DONNA: I’m very careful in my language in ways that Terry is not.

TERRY: [laughs] She’s kind! [laughs again]

CHRIS: Aw, you guys are great. You know, it’s just a joy to be with you guys. And to laugh and to cry and to be angry and to be hopeful and be sad and the whole kaleidoscope of disabled experience, man. That’s what it’s all about.

TERRY: And Chris?

CHRIS: Yeah.

TERRY: To play. [laughs]

CHRIS: Yeah, yeah, yeah. Exactly!

TERRY: You know, I love playing with you guys!

CHRIS and TERRY: [laugh]

DONNA: The three of us for characterizing much of it as work. And that word, doesn’t—

TERRY: It doesn’t cover it all.

CHRIS: Yeah.

DONNA: It doesn’t cover it.

CHRIS: No.

TERRY: Because, you know, Chris, because I was denied, in a way, the idea of work. You know, just growing up with disability, if you do any work, it’s gonna be like factory work, right? So, you get denied the idea that you can do work. It’s not so much when you’re given work or you get work. But OK, I never really thought I would be able to do theater or have a theater company or have anything like that really in my life. I wanted it, but there were ways that it was difficult to imagine. So, when it came, or when I found it, or when I worked towards it, it was like it actually was play. That’s all I ever wanted to do in my life is play. And so, it’s all play. For me, it’s just all play. And whenever it becomes really work—

DONNA: She gives it to me.

TERRY and DONNA: [laugh]

TERRY: She’s a dutiful little Catholic, that’s why. [laughs] Lapsed Catholic but. [laughs] I do encourage her to give it up.

CHRIS: Oh, you guys are great.

TERRY: Thanks for thinking of us.

CHRIS: Of course! Of course.

TERRY: Thanks for thinking of us. But we love you, and we hope to see you guys in the flesh sometime soon. Yeah. Well, just do that.

CHRIS: Yeah. [laughs]

[sweet electronic music plays through the next few lines]

TERRY: Well, take care. Wake up joyful every morning. I love that.

CHRIS: All right. See you guys.

TERRY: Give our love to everyone, OK?

JILL: OK.

CHRIS: We will.

TERRY: Give our love to everyone.

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: “This Little Piggy” and “Tumbler” by Podington Bear. (Source: freemusicarchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)