Episode 46: Julie McNamara (click for transcript)
Interview Date | April 24, 2020
JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit.
What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.
The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.
As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.
[peaceful music slowly fades into mellow music]
JILL: I can’t keep track which day it is.
JULIE: No, I’m with you. And in fact, actually, I tried to connect on this Zoom thing yesterday. [chuckles] It just said you were in another meeting, and I thought, what day is it anyway?
JILL and CHRIS: [laugh]
JULIE: I’m sure we said Friday. I’m sure we said 6:00 my time. Where is everyone?
JILL: Thank you for giving us a little wakeup call.
CHRIS: We get your email. It’s like, “Dudes, where the hell are you? What happened?” It was 10:00 at night when I got that email. Jill and I normally don’t work at night. We tried to respect each other’s time with the family and all that stuff. But I felt like, I really am grateful that you did it because I am guilty of getting stuck in, I believe, Jill, you call it the plowing through stage. So, if I’m tired or if I’m frustrated or whatever, I either have to be told by somebody to stop working, or I’ll just keep, I just keep doing it, you know?
JULIE: Mm. I must admit, I find it really hard working all day long online on a computer. I’ve got a brain injury, so I’m looking into light constantly. It drains. It eat your energy, you know? And I feel like we have suddenly decided this mad scramble to be online. We’ve decided that overnight, we’re gonna become experts in digital media, online platforming, Zoom teaching. I mean, the things I’ve been required to do over the last couple of weeks are ludicrous. I never thought I would agree to any of this, but somehow I feel like I’m colluding with this madness.
And I had a good old rant on Facebook yesterday literally asking the question, why? Why? We’re in a VUCA environment: it’s volatile, it’s uncertain, it’s complex, it’s ambiguous. We cannot plan ahead. And at the moment, our company’s being required to present a four-year plan. What’s that? Make believe? A four-year plan of what ifs. Is it dream time? I mean, what the hell?! It’s not real. We could just about manage three months at a time at the moment, and that’s been quite optimistic. But that would be real. If somebody asked me for a three-month plan, I can deliver. It’s crazy.
JILL: Well, and even a three-month plan would have to have contingency plans.
JULIE: Of course. Of course! This current context is unbelievable. I’m still trying to get my head round it. I wake up in the morning, and I think this is the dystopian universe I used to have nightmares about. We have all lost our moral compass, I feel.
CHRIS: You’re having to do a four-year projection for the continuation of funding?
CHRIS: That’s what it is.
JULIE: Yes. And if I’m honest, I don’t think—and I am honest anyway, so let’s not even have a what if on that one—I don’t think the Arts Council’s gonna survive this. Because I don’t think our government is gonna put funding there. Even though actually, what we’re doing online is more creative. We’re starting to look at film. We’re starting to look at visual arts online, working together to create. People are creating new collaborations and partnerships, which is fabulous. Where does the funding come for all of that? Do you know what I mean? Most of it, we’re funding ourselves. And I think disabled artists are really up against it at the moment, really.
[mellow music break]
CHRIS: What are you hearing from some of your disabled artist friends in the UK? I mean, are you talking to Liz? Are you talking to—
JULIE: I haven’t spoken to Liz for ages, actually.
JULIE: We’ve just had a few texts. I’m speaking to Caglar Kimyoncu, who we collaborated for many years together, and he runs FilmPro. We used to run the disability film festival together, for many years, actually. And we have literally just caught up with each other today, and we’re gonna start speaking to each other every day first thing in the morning just to check in, you know? There are other disabled artists who are feeling isolated. Some are feeling, hey, world. You’ve caught up with me. I’ve been isolating for years. A lot of us are going, well, you’re gonna need us as consultants now because we are the creative problem solvers. We’ve been doing this all of our lives, you know. Social distancing? No sweat. You wanna see how we manage our lives from day to day when we’re isolated? No sweat. We can offer advice. So, some people have literally come out as consultants and said, “I can offer you help! You wanna know how to manage your day? Talk to me.” Which I think is lovely. The precious irony, it’s delicious, really.
Sadly, one of the people I was talking to you about last time has died, and we’re trying to plan a funeral, which is quite extraordinary. It’s no kind of funeral I’ve ever planned before, because first of all, we were told there could only be three people there. Then we’re told, well, it’s a much bigger crematorium. We can have five people there. But one of the people who I know is much closer to Jamie, the person we just lost, has been told emphatically they cannot go because they’re shielded. That means they’re very vulnerable, and they’re supposed to be indoors self-isolating for six months. That’s really rocked her mental health. So, she can’t be there among the mourners.
So, we were trying to find ways: how can we make this work? You know, I’ll get my car bleached inside out. I will wear a full condom. I’ll do whatever it takes to get her up there to the funeral. So, we put this little plan together and presented it at the cancer care unit that she has to go to. And they looked at it and they said, “NO.” Capital letters. “No, you’re not going to the funeral. You’re not well. And now I know your friend’s not well.” [chuckles] So, we’re trying to think what else could be done.
One of the things that the two executors of Jamie’s will have discovered, a whole plan that she’d left behind of what she would really prefer. So, they’ve chosen a cardboard coffin. I kid you not. And it’s a white cardboard coffin. So, we’ve all been invited to send images of ourselves, poems, letters, creative drawings, anything that’s about our connection with Jamie, who was fabulous theater practitioner. And they’ve put a wonderful memorial page up on the Young Vic Theatre page with a beautiful photo of us. So, that’s lovely. But on that coffin, one of the people who’s organizing the funeral who can be there among the five allowed in, is gonna paste all of those images, signatures, photos, poems, gifts of stories of connection, final goodbye letters. And it will be plastered all over the coffin, and it’ll go with her. And there’ll be photographs taken of that. I’m not sure. Now, we’ve got a bit of a setback today whether we’ll be allowed to film, don’t know.
For those of us who cannot be there, and there’s many—I mean, that would’ve been a huge funeral because she was so popular—those who can’t be there will honor her on the day at the time and find our own ways through. And then afterwards that evening, there’s gonna be a Zoom gathering of celebrants. So, look. These are tough times, and I never thought we would be in this place. Who would’ve thought, really?
CHRIS: What reason are they giving you for not being able to film it?
JULIE: I don’t know, actually.
JULIE: I mean, I didn’t have that conversation with them, so I’m not quite clear.
JULIE: Well, why don’t they, I would film it anyway and just do it on a mobile phone. Do you know what I mean?
CHRIS: Mmhmm, mmhmm.
JULIE: But apparently it’s a bit like a sheep dip, and it’s very fast turnaround and very strict protocols. But also, it is one of the highest risk spaces to gather people in because there is no kind of wash down, bleach down of the pews or the handles or things that people touch regularly, like doorknobs and so on, coming and going into that space. So, it’s high risk. And, of course, we’ve got a lot of funerals in London. But because it’s so fast to turn around, I doubt very much whether it’s a thorough, deep clean, which is what you need in that context. Yeah. So, that’s the reality.
[mellow music break]
There’s some brilliant stuff online, DANC, which is the network up in Manchester, have brought onboard some fantastic disabled writers talking to people who want to work in film and television. There’s some brilliant activism coming out of Manchester’s Coalition and the Greater Manchester disabled People’s Network advising people how to respond to their letter they’re getting through the GP or that’s come through the door for some people. I think one of the most scary stories I’ve heard came through Chris Ledger from, she used to be Arts Council North of Ireland. Then she was Arts disability Forum, now known as University of Atypical. A 16-year-old boy received a phone call from his surgery. He has autism, and he has asthma and a breathing condition connected to his asthma. So, he has to go on ventilation regularly. And he was asked, even though he said, “I’m only 16,” he was asked would he signed the DNR letter…to make those hasty decisions that have to be taken on the front line easier. That appalls me. That’s a 16-year-old, very bright boy, actually. He told one of his parents who he felt would support him look at his rights around this. But he has completely lost faith in his GP. He doesn’t trust anyone. And he didn’t like telling his other parent ‘cause he suddenly thought, I’m not sure if you want me dead or not. Would you have actually said DNR for me? So, it’s caused huge kind of grief and distress for that young man.
CHRIS: I’m really surprised because last time we spoke, and I think it was either with you or somebody else from the UK. And no, I think it was from Ruth Gould, who’s in Wales. She said that actually, that the first company that had sent those letters had retracted them, was feeling terrible about them, and sort of publicly apologized for them. But are you guys still seeing and feeling the presence of that letter, those letters?
CHRIS: That is really ugly.
JULIE: You see, an apology might come out of one surgery or one critical care unit or one particular patient’s council or something, but it’s not connected. It hasn’t traveled the breadth of the country so that everybody now knows, ooh, that’s not quite the right way to go. Inevitably, of course, there are really difficult decisions that have to be made when resources are tight and we don’t have enough equipment. I don’t know what that must feel like. I don’t know. I’m not in that position. And I have compassion for those beleaguered frontline workers in the national health. And we are losing so many doctors, so many nurses, so many care workers on the frontline. So, yes, there may well have been an apology. Ruth’s quite right. But there’s no joined up thinking across the country at the moment. We’re seeing a kind of breakdown in communication.
And let’s not get too far in the glass is half empty because actually, we’re seeing some extraordinary pushback as well. So, Dennis Queen has put stuff up on their site, literally encouraging people to look at their rights, how to respond to it if you get the letter. And people are working together online, you know. Disabled People Against the Cuts, Black Triangle, Greater Manchester Coalition, We’re Not Dead Yet. And Barbara Lasicki, who’s done some brilliant stuff online as well, literally saying, we’re in this together. [chuckles] She’s also firing us all up for the revolution, you know. “Can’t wait for these days to be done. I’ll be out there running people over pretty swiftly in my power chair.”
CHRIS: I was reading some ADAPT stuff yesterday and looking at Disability News Scoop, a platform here in the States, and then there was something else I had read, too, that encouraged me a lot. Oh, it was the Disability Rights and Education Fund, right?
CHRIS: Yes. They have a lot of resources on their page for people who receive that sort of information, too. I do like glass half full.
CHRIS: And I have moments of that.
JILL: Like in our own city, so there’s a Center for Independent Living is called Disability Advocates of Kent County. And I think it was a week or so ago, they put together a letter that went to all the main hospitals and got other disability organizations to have their name on this letter and basically saying, we don’t know of any situations where you’ve chosen to make a decision about someone’s life and their value. But please don’t. I was really proud. I mean, I was just proud of this group that preemptively, proactively is contacting and say, we’re watching, we’re paying attention. And as a community, we are gonna hold you accountable.
CHRIS: And the other thing, though, too, that’s really positive about that is I am actually proud of our American-ness, because in that letter, we were able to lean on our civil rights laws and say, please uphold the civil rights laws, right, of ADA, of 504, and of all the things that we have fought for, for so long. And I thought that was a really important element of that letter, because it wasn’t just us saying, “Please protect the dignity of our people.”
CHRIS: Instead, it was, please remember that we have these precautions in line, and we have fought for those precautions, you know? And I thought, well, there you go. I mean, if there’s something to be proud of in this weird situation, maybe that’s something.
JULIE: Yeah, it is.
JILL: Well, I think of all the places that you just mentioned, the message is, I’m anticipating, the same.
JULIE: Oh, yeah.
JILL: This is the response. So, there’s this unity in response from the disability community that I don’t know if it’s existed before.
JULIE: Definitely. Yeah. Yeah. It’s extraordinary. The pushback is very strong, creative, and connected. And actually, it’s so lovely. I got an email from a filmmaker who was out at Picture this…film festival two years ago, and we’d only met during that film festival in Calgary in Canada. And he wrote to me today, and he said, “Push this out to all of your filmmakers in disability arts. Push this out to anyone who wants to write for screen. We’re looking for ideas. We’re looking for stories now. And this is the online platform, and this is all free. But we want you in.” And that guy’s a non-disabled ally. Brilliant.
[mellow music break]
CHRIS: So, last time we were together, we did some funny and lovely thinking about your birthday and the card that you had gotten and the wonderful card, yeah. Have you had other moments of joy in the past week that we can all hear together?
JULIE: Yes. I’ve written a Blues song, but I haven’t got the tune right yet. But I’ve been working with a composer who’s over in Australia, a young composer. She’s about 24. I mean, fabulous, fabulous composer who comes from Austria originally and is now in lockdown in Melbourne. And we met through this feral queer camp, which was both hilarious, challenging, and so exciting. That was in the Australian summer, so January, February this year. Her name is Meta Cohen, and we’re gonna hear from her again. I have no doubt. And she was so excited when I approached, and I said, “Look, I’ve got these lyrics. I’ve heard your music. It is absolutely stunning. I want you to play with these lyrics for me.” Anyway, we’ve been meeting at least once a week and going crazy online with these new ideas. I think you’ll like it. When I finally get the tune right, I’ll send you a little riff. It’s called Messy Ever After. That’s a great joy. [laughs]
JILL: That’s fantastic. Yeah.
CHRIS: I like the sound of that. That’s good.
JULIE: Yeah, yeah.
CHRIS: Music has never sounded better to me, in a weird way. Like in the last four weeks, especially, when I’m quiet finally or when I stop, music has been, I mean, it’s always been important to me. But lately it’s just I find it like a hug from something, you know. And the other day I was listening to Paul Simon, his concert in the park in New York, which was for like one of the biggest crowds ever. I mean, there was almost a million people in Central Park, right? I mean, it’s just unbelievable. I listened to him singing to that huge crowd of people, and I was just like, man. Even though it may be a long time till we can have events like that, there’s something comforting of the memory of it that—
JULIE: Yes, there is.
CHRIS: —yeah, that’s just beautiful.
JULIE: Well, the other thing that gave me great joy this week was talking to somebody who’s been my writing mentor for the last year and a half, woman called Lisa Goldman, who’s a brilliant playwright, writer, and mischief maker. And she is planning, I can’t say too much about it, actually, because it’s a massive amount of funding in the balance kind of thing. But working with very particular technology that’s out there at the moment, she’s gonna create a universal hug across the planet. Yes. And we’ll be able to feel it with our haptic sensors, etc. So, that’s exciting. Yeah. Fabulous stuff.
CHRIS: Yeah. Jill, what is your joy moments, man, this last couple of weeks?
JILL: I just get a little silly with the kids. I don’t know. That’s my moment, so. [chuckles]
CHRIS: Playtime. Yeah, yeah.
JULIE: That’s lovely. And do you know what that reminds me of, is the great joy I have now is listening to the kids and Troy and Sophie having a full home life, a family life without the police staring down their necks or waiting to grab them off the street because they’ve been fighting this immigration case for four years now. But right now, there’s no planes. They can’t be taking him anywhere. He’s going nowhere! So, there’s a sense of security. And the police have got other things on their mind. So,, they’re having a wonderful family life at last. At last. That gives me great joy. And they’re out in the backyard, literally cooking. He’s a brilliant chef, so he’s been doing food drops nearby for people who smell over the fence and go, “Wow, what kind of food is that?” And he goes, “Mmhmm! It’s soul food.” It’s lovely.
CHRIS: And what’s other words from Australia, and how your love?
CHRIS: Yeah, what’s up?
JULIE: Ah…. Well, we weren’t able to speak together yesterday, and she had a really difficult day. So, I just got these texts in distress. And then it was so hard to reach each other. I kept trying. I’ve tried on every kind of gadget and gizmo. And we didn’t manage to speak, but I’ve now downloaded something called Marco Polo. You can send little videos. And so, at least I’ve sent her a couple of films of me kind of trying to reach in, you know. And I’m crap at technology. She’s brilliant. She sent me a film with various different voices on it, with backdrops and different, I don’t know, god knows going on there. Look, I am old-school: couple of cans and a piece of string. That’s me. Yeah, I’m anxious about her at the moment. I’m more anxious about what happens when we come crashing down and all of this Ethernet fails because we’re all online, suddenly. It can’t go on forever.
CHRIS: That’s a solemn thought that I’ve been trying not to have. I am worried about that, and I worry about in stupid times, I think, or silly times. So, Jill was having some trouble with her Internet when this all happened. I remember feeling like, dude, if we didn’t have Internet, this would be bad.
CHRIS: I mean, really bad.
CHRIS: And then you think about, OK, all the businesses that are running too. Yeah, it’s a little too, I don’t know. I need to talk to a computer scientist or something. But I don’t know. Have you guys read anything about that?
JULIE: Not yet, no.
CHRIS: Mm-mm, mm-mm.
JULIE: I’ve been reading up on the kind of brain drain and fatigue and exhaustion that comes with too much Zoom and too much harnessed to the computer all day. Because unfortunately, that’s what we’ve had to do in order to learn how to use these things and in order to get our messages out there to our cast and crew and artists out there. I mean, look, we’ve had to cancel two tours, so, yeah.
JILL: So, that explains it, Chris. That’s why we have so much brain drain. We’ve been doing this for a number of years. We don’t have an office space, so we spent most of our time, previously on FaceTime. And so many meetings, so much of our work is we just work remotely together. And so, this is not different for us.
JULIE: But it’s kind of easier if you’re on a little phone, isn’t it, because you can walk and talk or move around and talk.
JILL: Yeah, but we use our computers the whole time when we’re working. So, yeah. So, I don’t know. Maybe it was the 0 to 100 for some people, but for us, it really wasn’t a transition. Our workflow hasn’t changed.
JULIE: Yeah. I think there are certain conditions, obviously self-referring now. It’s no good with brain injury, let me just say. Absolutely no good on. And I keep making stupid mistakes, and also I find myself getting very teary and emotional. And while I think that’s absolutely right and appropriate, because who wouldn’t shed tears over where we’re at right now, I suddenly find myself— Look, I mean, I’m in a very small bedroom. My office is now built a foot away from my bed. And I find that the work meetings feel like an intrusion sometimes, ‘cause I’ve got the cast, the crew, the whole staff team around my fucking bed! That is weird. That’s not well. That’s not well at all. [laughs] It’s just like, what happened to boundaries? What happened to privacy? [chuckles] It doesn’t exist anymore.
CHRIS: It was really interesting, ‘cause maybe a month or two before this happened, Jill and I and our sort of our marketing communication coaches, we had a really long, heartfelt conversation about, in particular, my feelings about video calls. Because I was feeling, and I always had before, have felt like it’s so much easier for Jill to go to a meeting and for me to just grab my computer, right? And then we had this really long conversation, though, about presence and feeling present in meetings and feeling left out and all that kinda stuff. And now, six months later, here we are. And it’s like, I am so grateful that we had that conversation.
JILL: It was very personal for you—
CHRIS: It was, yeah.
JILL: —of symbolically and then physically being left out or not as present. And there was a difference before, when everybody would meet—
CHRIS: There was, yeah.
JILL:—and the technology would not be reliable or consistent, or you couldn’t hear or whatever. If your needs mean that you have to work from home and you can still be viable and you can still contribute, then that’s how the world should work.
JULIE: Too right! We’ve always had that in our articles of memorandum in terms of the culture of the company we run, people can work remotely. We’ve got a board member that was working internationally. So, I think they only actually met the rest of the board once in the whole time they were with us, you know. Because physically, they live in Canada, but they’re fantastic member of the board. I don’t know what we’d have done without that person on, to be honest with us. They were with us for some years. They’ve only just left.
JILL: Yes, five members of our board are remote, actually.
Well, it has been so good to see you. You seem brighter today, like you’re in a little better spot.
JULIE: Yep. I feel better because I’ve been doing more. [mellow music returns through the next few lines] Do you know what I mean?
JILL and CHRIS: Mmhmm.
JILL: Well, this music: the creative brain is being worked. I don’t know what your schedule looks like. We’d love to do this more often.
JULIE: Oh, that would be lovely. I don’t know what my schedule is, frankly. It’s kind of collapsed. So, I would suggest we try and find the time once every couple of weeks or something.
CHRIS: Yeah, I would love that.
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: “Encounter” by Podington Bear. (Source: freemusicarchive.org. Licensed under a Creative Commons Attribution-NonCommercial 3.0 International License.)