Podcast

Interview Date | April 3, 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 ambient, electronic music break]

CHRIS: [huge gasp] Hi!

JULIE: [gasps]

CHRIS: YAYYYYYY! 

JILL: Hi, Julie!

CHRIS: Hiiiiiii! 

JULIE: This is a miracle! 

CHRIS: Oh, my gosh. 

JILL: It’s so good to see you. 

JULIE: Oh, you too. 

Hello, everyone. I’m Julie McNamara, known as Julie Mack. You can call me Julie Mack, or you can call me Mack. I don’t mind. I’m Artistic Director of Vital Xposure. I’m a writer and a mischief maker. I’m a disability activist. And I ain’t finished yet. [chuckles]

CHRIS: How are you doing, man? How’s it going? 

JULIE: It’s tough, tough, tough. 

CHRIS: Mmhmm, yeah. 

JULIE: I mean, London is overcrowded and very tense on the streets. Where I live is on the East end of London, and so it’s one of the poorer boroughs. So, a lot of the food supplies are not getting through, so there’s been panic buying, do you know what I mean. And I can understand people with kids kind of panic buying, do you know what I mean. I have a car. I’m lucky. So, I can go out late at night, and I go scouring the streets to see if any of the Turkish shops are open up the road. There are vegetable and fruit shops that are open, so. And most people are on complete lockdown, you know. So, I’ve been doing food drops at a care home that’s effectively been abandoned by the profiteer owners. 

CHRIS: Mm. 

JULIE: They’ve got a skeleton staff of three people on the front line trying to look after 40 folks. So, once a week, I take food there and do what I can. But they all look so confused. And it’s quite a posh building. It’s one of those pretty palaces, do you know, but it’s a pretty prison. And I just see these folks looking just completely confused, wandering around behind these glass doors, you know, and they’re locked in. They can’t get out. So, I have to be masked and gloved up and everything. Can we do everything at a distance? And the food is packaged very carefully. And then I do the drop, and then I wave. There’s a couple of people’s numbers I’ve got, so I’ll ring them up on the phone and make sure they get fed. And sometimes I have to ring more than twice on the same day to make sure they’ve got the food. I completely get it. The staff that are left are just overwhelmed. So, it’s tough. 

CHRIS: Are they living there? 

JULIE: No, they’re not living there. They’re on 24/7 rotors, you know. So, a lot of people have had to pull out to look after their youngsters, or they’re high risk themselves. 

I just see a breakdown of our systems, you know. And resources here are scarce. And of course, the first people to hit the wall are disabled people, as we’re seeing by the advice coming through British Medical, what is it, BMA? Aw, I can’t remember. Anyway, you get the picture. So, look, I’m doing what I can. I don’t remember feeling so challenged emotionally. Sometimes I wake up, and I’m just blue…. Teary? Yeah, teary. 

CHRIS: Yeah, that can be exhausting. 

JULIE: How are you two? 

JILL: Well, my husband’s at home working. We’re very fortunate that we’re people who can continue to work, and we’re not being laid off.

JULIE: Wow, yeah.

JILL: So, we feel that we’re in the fortunate group of people. We have three kids who are just navigating life at home, and we’re all, for the most part, getting along. So, like those are all wins. So, it’s been three weeks for us that we haven’t interacted with other people, or we haven’t gone to the grocery store. We haven’t done anything. We just felt that our biggest contribution is to stay away from people. And any risk of our kids or ourselves could be carriers. Our kids are, I mean, I have to give them a lot of credit. From early on, when all their friends were still going out and doing this and that, and we as a family said, “No. Our role is to think about other people besides ourselves and what we want.” I think that’s just the mentality that we’ve all kept, because there’s always, we’re so connected across the world. If you’re gonna look for beauty in this, it’s just to show how connected we are as people across the world. It’s amazing to follow the trails of how many people we come into contact with.

JULIE: I have very little interaction, very little interaction. So, it’s wonderful to see your faces and to be able to connect.

CHRIS: Just really quickly, I’ll share that Lisa’s here with me. She’s working from home as well. And Moses is home. And schools have just been canceled for the rest of the year. That was a big change for us this week. We’re not a population that can easily cut ourselves off, right? So, there is a lotta care going to Lisa who, you know, is not normally doing that stuff.

JULIE: Yeah.

CHRIS: And so, that’s been so far so good. I mean, we’re in good spirits. There’s a lot of uncertainty. And then yesterday, we got that post from Liz Carr, that everybody was sharing around. And I would really love to hear a little bit more about that from you. What are you hearing over there? What’s your response to it?

JULIE: What I know is that some people are receiving letters from their general practitioner. The letters effectively say, you know, “Lighten our load, would you? Make sure you let your family know that you don’t want to be resuscitated. Bear in mind, we’ve got so few resources we’re gonna have to make harsh decisions when it comes to sharing resources if your life is at risk. Also, bear in mind how high-risk it is to offer CPR, mouth to mouth.” I was just enraged! I thought, how did we get here so swiftly? You know, that we’re already going along the road of life, unworthy of life. The Third Reich. 

And actually, I completely understand that there are people on the frontline here in the National Health Service who are utterly, utterly blown apart by the overwork, the lack of resources, 12-hour shifts on a four-day stint. I mean, that’s too much for anyone, both in terms of that traumatization on the front line where you’re dealing with very unwell people and high-risk people, and you’re losing them constantly. I mean, our deaths have shot up over the last week alone. And that’s largely because Boris Johnson didn’t act swiftly enough. I mean, the guy’s a clown. Don’t get me started on that one. I did not vote that in. I am enraged, is all I can say.

And part of what I’m doing at the moment is kind of trying to alleviate the worries of the people who feel left out or who feel targeted. So, some of my posts on Facebook have been about, to those of you who are in that high-risk category, you’ll keep hearing these messages over and over again that you’re likely to die if you’re over 70, if you have an underlying condition, if you have a learning disability, if you have a breathing condition, MS. I mean, there’s a whole list of conditions that they’ve quite openly said, “Well, you’re high risk.”

There was a wonderful statement put out by a doctor from Intensive Care Unit, and it was on Channel 4. I can’t remember which Intensive Care Unit he was speaking from, but he said, “I want to speak to all those of you who feel left behind. I want to speak to those of you who are in these high-risk categories that we keep talking about, that you keep hearing these messages over and over again. And I want to tell you that we will not leave you behind. That we will treat you. That we will treat you with respect. That we will hold your hand, and we will do everything we can to support your well-being and your emotional health while we try and cure you. And if we can’t do that, then we will hold your hand and support you to the end. You will not be left behind.” And it was such a powerful and loving message. It was the first time I’d heard anything on national news here where we were reaching out to people who are completely flung to the political periphery and terrified and terrorized by these messages.

[ambient electronic music break]

CHRIS: There’s some conversation that we had yesterday with somebody that we were interviewing. And we started talking about, you know, none of this is intentionally done. Or is it intentionally, right? The attitudes that we’re getting from the press and from some of these folks who were sending the letters out, you know, is it something that they are doing out of desperation and ignorance, right? Or is there actually an opinion that there are a class of people who are less than, right?

JULIE: I think it’s a bit of both, Chris. I really do. And that’s what worries me. I think scratch the surface, and the attitude sits there stinking anyway. But it’s hard to put a face or a name to the people who are sending these letters out unless you’ve had your personal letter from a GP you know and love and who’s been treating you over years. But it’s not coming out like that. It’s coming out like, this is government guidance. And that’s what worries me. Actually, I feel like, how did we come here so swiftly? Is this economically driven? Is this driven by the really poor attitudes that come out of this particular Tory government that we have in at the moment, if we’re looking at the UK system? Life unworthy of life. I mean, I can find you clips on YouTube where Boris Johnson has literally spoken to his voters and said, “Of course, I’m not addressing the people in this room who’s IQs are probably over a 112. But the broad mass of all voters out there, let’s not discuss their spiritual value. But basically, they are well below par on their IQ measurement.” And I thought, wow, what are we saying now? And this is our Prime Minister?

CHRIS: Again, the quality of life question during times of crisis is always, you know, it’s always up for grabs. And if you look at history during these times of crisis, that whole discussion of who counts, who doesn’t, has been something that, throughout human history, we have dealt with poorly. The difference is now that we have digital and computerized communication, now more than ever, those people who were at the lower end of whatever a life is worth, those people are still able to get their messages out and still able to communicate, right? Which wasn’t the case during the Second World War. Wasn’t the case during some of the other conflicts. And so, I just hope that that initiates some sort of change. But I don’t know. That’s more me just being optimistic, I think.

JULIE: Well, we need your optimism. And actually, I hope so, too. I would say that there are swathes of people who don’t have access to Internet, who don’t have reliable Wi-Fi, who don’t have safe homes. And I really worry about some of the people who used to gather round our place at Vital Xposure, our theatre company. Because we’re near the crisis support homes, and we’re near the Hackney Winter…what’s it called? It’s a rescue place for people on the streets. It’s now running on a skeleton service because it’s usually run by volunteers. So, there’s very few people who can use the night shelter. But we’re seeing more and more people on the streets, and they’re our most vulnerable people. And they’re not getting the messages about, well, where’re they gonna wash anyway, to do their clean hands and safe distancing? I mean, they’re holding together to try and keep warm. They don’t understand why people are suddenly keeping well away from them. And of course, we used to give cups of tea to people around our place. Well, we’re not there because our place is shut down. I don’t know what’s going to happen to those folks. But I’m determined that we will hold the dignity and hold their voices and make sure we tell the story, because I can’t help thinking they’re gonna be the first to go, if we’re looking at more loss of life. That sounds dismal, but.

JILL: Yeah, so how can we get the stories firsthand from the people who are in the shelters and on the streets? Because their voice is important. Do you have a suggestion about how to reach specific people that are in the most need?

JULIE: I can get one of the volunteers to see if she will speak to you. It would be with some caution. I mean, she probably won’t use her own name, but that’s OK. I can also get somebody from the front line at one of the care homes. There’s also somebody else I visit who’s in end of life care. And she’s struggling right now because it’s the lack of social interaction that’s gonna kill her, not her condition, do you know what I mean. I wasn’t supposed to stay overnight, but I decided [chuckling] I’d stay overnight with that particular person because I thought, fuck this, do you know what I mean. I mean, this is inhuman. Yes, there’s a virus let loose. But you know what? I could get run over by a bus. Well, if there was any left on the streets, but you get my picture. I just thought I couldn’t leave her there. She was so tearful and so distressed.

And I said, “OK. Listen, I’m gonna come in a mask and gloves, and I’m just gonna listen to you, and we’re just gonna swap stories. And if you’ve got some, I don’t know, have you got a blanket or something? I’ll just sit in a chair in the corner.” And I said, “And I’ll stay through the night with you.” She said, “You’re not allowed to do that.” And I said, “Says who?” She went, “Well, I see what you mean. There’s nobody here.” I mean, she’s in what they call shielded. So, there are people who are isolating. There are people who are shielded who’ve been told that they have six months indoors. And the people who are shielded are extremely vulnerable and probably at high risk of carrying the virus to somebody else as well.

JILL: I am just listening to all the things that you’re doing to value, that you value people, you value relationships, you value people not being left behind, and—

JULIE: I don’t feel like I’m doing enough, to be honest. 

JILL: Yeah, and that’s the second part of this. I think you have a lot of pressure on you, self-induced pressure, to take care of everybody around you. And I don’t know. That’s just what I’m picking up. I’m not sure if that’s true or not. 

JULIE: I don’t think it’s about taking care of them. I just feel driven. Look, you know me. Both of you know me well enough. I am driven by social justice, by a search for and equitable life that means that no voice gets left behind. That actually, everybody is equally valued even though we’re so different, all of us, whether it’s our cultural backdrop, our gender, our sexual preference, our dietary requirements. I mean, who cares? You know, we’re all human. We’re in this together. So, I get it. There’s a very virulent thing out there. It’s invisible. We don’t know when it’s gonna get us, but it will. I suggest we all need to have a little bit of it because— Now you’re gonna suggest I’m a conspiracy theorist. Perhaps I am. But I feel somebody was messing in a laboratory, and that one escaped before they could really look at it and realize, whoa, this is the dangerous one. They’ve let something out of the bag.

CHRIS: Yeah, I’ve been trying not to think that way. But yes, this is a ripe time for philosophizing, but it’s also a ripe time for those sorts of theories to get out. Yeah.

[ambient electronic music break]

CHRIS: I’m so interested in the difference between the medical systems, between the UK sort of national medicine versus the U.S. For us, it’s that the pressure of free market and the pressure of capitalism being the way that we define our worth, right? So, disabled people are already at the bottom of that list. The DNR stuff, although it has been talked about a little bit here, it has not been as, like you said, sort of coming from the state level. The pressure’s happening, just in different ways.

JULIE: And look, I cannot prove that this is government guidelines or the kind of closet guidance that happens behind closed doors where GP surgeries and health centers are instructed to advise in a certain way. And it’s interesting. If you hear Boris Johnson’s speeches, when he first began, he didn’t give guidance. He didn’t give instructions. This was not a government directive. And what that means is we can’t claim on our insurance, for God’s sake, because it’s not a government directive. It’s just a suggestion. So, he suggested that there should be no more public gatherings in crowded spaces: So, no more festivals, no more football matches, no more theatre gatherings.

Now, we had just begun our tour. We hadn’t even mounted the first show. In fact, we gave them a get out actually the day before, on the Sunday. Theresa Veith, our Exec Director rang them up and said, “We’re gonna give you a get out here. If you think there’s any chance that you’re gonna have to cancel these shows this week, we won’t send everybody up tomorrow. I’m about to send 11 people on our team up to produce a show with you.” And they went, “No, no! We’re ready. Honestly, send them. Send them.” So, of course, the next day, which was a Monday, we all set off up to Stockton, up in the northeast of England, near Darlington. We got the theatre set built. We got the lighting in. We got the bells and whistles. We had the soundscape. It looked beautiful. I so wish I’d taken a picture, but you never think it’s gonna be pulled down in a minute. We had a great meet and greet gathering. There were 13 of their team and then our team. And it was wonderful. They asked us some great questions, and I was so proud to hear our cast own that work.

And ironically, of course, the whole show is about the erasure of women’s voices inside medicine and how swiftly we cast our disabled children. [chuckles softly] We throw them under the bus for the gains of science and medicine. It’s called Medicine’s Monstrous Daughters. And we never got to open the first night. Because we were all out in a restaurant. Suddenly, I got a phone call saying, “You’ve got to pack up and go by 11:00 tomorrow morning.” And we can’t claim any insurance for our losses of that two-month tour with seven venues, and we still have to pay all 11 artists for two months. They’re all contracted. And I would never not pay them, actually. They’ve done the work. It’s not their fault. But it’s the language that’s being used. There is a particularly manipulative language. So, I mean, somebody like Boris Johnson has got shares in the insurance schemes, in the insurance brokers. So, there’s no way he would give a government directive. Because that would mean he’d lose a bit of money, and there’d be a dent in the pocket somewhere, wouldn’t there? It stinks.

But I’ve heard some really hopeful things happening as well. And I think it’s really important that actually, we get some messages of hope out. Because the way some communities have banded together has just been oh, so inspiring. For once, I will use the word “inspirational.” [laughs] And it’s not crip porn for once. But it really is about people doing extraordinary things like sending messages round the neighborhood. Making sure if there’s a Deaf person that you happen to know there’s a Deaf person there, that you put a note through the door that they know that there’s somebody coming for them, and tell them. Give them a mobile phone number so they can text if they need help in any way. People have offered their Zoom and Skype connects online so that there’s been ways of keeping people together. 

There’s somebody who does Tai Chi sessions for free out near a tree every morning at 6:30. It’s a bit early for me, I’d have to say. But I managed one session, and absolutely beautiful, and done, everybody does it about three feet apart. But it looks beautiful, and it just, it’s like a piece of outdoor theatre, you know? And sometimes people are just weeping. I run a little session on shadow hugging because the sun came out the other day. So, we were all over the park, and I encouraged the few people around me to hug each other’s shadows, [laughing] you know what I mean. Literally just stretching out to touch shadows. And I took some photos of them. 

Sending good news round has been really important, you know, like images of the animals that’ve just taken over. Just beautiful stuff like up in Paisley on a working class estate, the deer have wandered in, and they’re just sat there in the middle of the village square! It’s hilarious! You know, there’s all these dear with the great big bloody antlers sat round. “What do you think of that, Effie? See that? I never liked that tune. Who’s there?” “Ah, it’s a disgrace.” They look like they’re just having a chinwag in the middle of that village. Paisley’s just outside Glasgow. And then there was another one, a street in Wales. And again, it just looks like, what are they doing? They’re in the middle of a housing estate that’s been taken over by all these goats with these great big horns, you know. Fabulous stuff! Dolphins arrived in Venice, swimming down Venice. That’s been silted out for years. It stinks. It’s full of sewage. No, not anymore, mate. So, really, extraordinary good news.

One of my favorites is these two guys from Italy. And on the day of this guy’s birthday—I wish I knew the names for you—they were getting so excited ’cause one of them said, [uses Italian accent] “I have invented a respiratory machine out of a child’s snorkel. It’s a head mask with the tube. And I’ve used a 3-D printer. And now I have made this thing, and I’ve saved 100 lives today. It’s the best present for my birthday ever.” And it’s been declared safe to use. It’s been used in Critical Care Units. And he’s been pushing out to these really, really, really under-resourced, poor places. There’s so many people with not enough equipment, etc. And he’s made over 100 snorkel masks, turned them into little [cellphone rings once] respirators. Sorry about that. It is actually turned off. I don’t know how it came on. [sets down phone] My apologies to everyone on the podcast, but it’s nice to know somebody still loves me.

[ambient electronic music break]

JILL: What is your hope, your moments of hope?

JULIE: I hope that I see my beloved again someday. I feel torn apart by that. I’ve got a ticket here to Australia. I should’ve flown out yesterday. Sadly, they shut the borders down, I think, 10 days ago. And I knew at that point, I thought I’m not gonna get back in. And I had just left Australia to do this to tour, Medicine’s Monstrous Daughters. And she’s now in isolation on her own, working from home, our home there in St Kilda. And we don’t know when we’re gonna see each other again, because we don’t know when the airports will open. We also know that at the moment, people from the UK traveling out of the UK have been very high risk. We’ve caused a lot of damage. I can’t remember which airport it was, where all of the most recent cases of coronavirus had come from UK travelers. So, I suspect it’s gonna be a long time before we will see each other again. It’s tough, you know. So, what would I like, me personally? I’d like to know that we will see each other again and not too far away in the distant future, do you know? Yeah.

CHRIS: Are you hopeful about this changing the culture’s imagination about our community?

JULIE: I think we have some work to do to change their minds and hearts. I mean, I was out on the street last night, and we were all clapping. Every Thursday night at 8:00, we go out onto the streets, and we clap in support of the National Health Service, for all those workers on the front line. None of them have been allowed to be tested, and we’re starting to lose doctors and nurses now on the front line. They’re working long hours, and they’re working with such dedicated care and love and respect and for a pittance of money, under-resourced, not enough masks. I mean, I can’t even go there. So, we make sure that we get out on the street, and we support them. And I would like to think that we can change people’s hearts and minds by hearing some of the stories that come out of the National Health Service, that come out of those front lines when they talk about those moments when they’ve supported somebody to get through the other side. We’ve heard some brilliant stories like there’s a newsreader, I’ve forgotten his name as well. It’s like my head’s a sieve. He’s got cancer; he’s got bowel cancer. And he’s had coronavirus and come out the other side. And so, he’s been a really positive role model talking about, “Don’t be afraid of this, you know. You too can get through this, too.” He said, “The thing that’s gonna take me out is cancer, not coronavirus.”

And I think we’ve got some really strong role models in our disability-led arts communities. I think it’s really important that the arts comes forward now because we’re so undervalued in lots of ways. And actually, it’s artists that we’re looking for to help us stay alive mentally and emotionally at the moment. You know, looking online at the sorts of strings of poetry that’s going round or the communal sing-ins that are coming through Zoom. I wish I had stronger Wi-Fi or I’d join in more often, do you know. Artists out in the park going, “Join me for Tai Chi,” or “come and dance with me two feet at a distance,” whatever it is. Two meters, I believe it is. Yes. I have hope that we will change people’s hearts and minds, but we have work to do.

JILL: What else would you like us to talk about? What’s on your mind?

JULIE: I found a beautiful poem from Rumi today, and it dropped out of an old diary. [paper rustling] And I’m just gonna read it.

“Today, like every other day, we wake up empty and frightened. Don’t open the door to the study and begin reading. Take down a musical instrument. Let the beauty we love be what we do. There are hundreds of ways to kneel and kiss the ground.” I love Rumi. [paper rustles]

The other thing that…. I don’t know what your belief system is, and I don’t know what mine is anymore. Because sometimes I feel we’ve been so horribly let down by probably other humans and also by any concept of organized religion. I can’t quite believe that we haven’t opened up yet the synagogues and the churches and the mosques and brought in all those people in crisis. I can’t believe that we haven’t created homes for our homeless people, especially as it’s been so cold here. And yet, it was my birthday last week, and I didn’t get many cards because we’ve got no post at the moment. And that’s OK, you know. I’m a grown up. But yesterday, I was looking for a card for my upstairs neighbor, and I was just gonna slip a card in for her. And as I went through the filing cabinet, there was a card there. And I thought, I didn’t see that before! Wow, that’s funny. ‘Cause it just says on the front, “Happy 60th birthday!” And of course, I’ve just been 60, so I was all excited. I thought, how come I never saw that before?

And I open the card, and it’s from my father. Now, my father’s been dead 25 years, but it’s a card that must’ve been sent to my mother when she was 60. But what the hell am I doing with a card for my mother?! Do you know, I don’t know how it got there, and I don’t know how it came to be there. But the thing that really spooked me out was I’ve been through that filing cabinet several times in the last week or so because I had a couple of burglaries. That’s another story. And I can’t find my tenancy agreement. It’s the kind of thing you’d flog in a pub and get a lotta money. But anyway. I don’t know how that card came to be there. And on the front of the card is a picture of a red car, which me dad makes a comment about. And he goes, “On the front here is a Nissan Cherry. I hope this day makes you feel merry.” Yeah, he’d like to think he was a poet. And but behind the red car, there is this canal walk with a beautiful stone bridge and one of those old barge boats. And the weirdest thing was that was my mother’s favorite place to walk, when we walked down here in London. And it looks just like the canal walk that we go on. And when I showed it to Alison on what do you call it, WhatsApp— And that’s my partner’s name, Alison. When I showed it to her, she said, “Ooh! It’s Springfield Park where we go walking.” I said, “It absolutely is Springfield Park.”

So, I don’t know what goes on in the universe. I have not one clue how that card came to be or came to be with me and arrived just when I was feeling so bloody miserable. And it made me feel quite hopeful and also sort of curious. And I think it’s really important to stay curious about life and about this world. I don’t know how we’re gonna get through, but we will, somehow. And maybe it’ll be with my card. 

JILL: Wow, that’s amazing. 

JULIE: [footsteps, then voice getting farther away] It’s 60 seconds away. 

JILL: [chuckles]

JULIE: [footsteps quickly moving closer] Maybe not 60 seconds. Look at that! 

CHRIS: Look at that. [pauses, then laughs] I love it. 

JULIE: I know! And also, the thing that I don’t get is this card’s supposed to be 25 years old. 

CHRIS: Yeah. 

JULIE: It’s in pristine condition! 

CHRIS: And you’ve never seen it before? 

JULIE: No! And that, that’s Springfield Canal Bridge. 

CHRIS: That’s really phenomenal. 

JULIE: That is weird. 

CHRIS: Yeah. 

JULIE: I don’t know what to say. 

CHRIS and JULIE: Happy birthday to you! 

JILL: I’m not singing! 

CHRIS: Come on, Jill! 

ALL THREE: Happy birthday to you. Happy birthday, [dear meeeee!] dear Julie. Happy birthday [to me] to you! [delighted laughter]

JILL: That’s making me smile so much it hurts to smile! 

CHRIS: [still laughing]

JILL: Yeah…. 

CHRIS: It’s so good to see you. 

JULIE: So good to see you, Chris and you, Jill. 

CHRIS: Aw, goodness. And thank you for sharing your stories. And be in touch. Let’s be in touch. 

JULIE: Yeah. 

CHRIS: ‘Cause it’s, you know, we gotta keep ahold of each other, so. 

JULIE: It’s our life thread. 

CHRIS: Yeah, yeah, yeah.

JILL: We’ve heard about people who are dying alone in hospitals. 

JULIE: Yeah. 

JILL: And I wonder what connection they’re having virtually with their loved ones. 

JULIE: My dear friend, Claire, her friend died on Tuesday night. It was the virus, of course, that took them out. And his family couldn’t get there in time. But also, he was only allowed one person by the bed. They have to be masked and completely in a hazmat biochemical suit and gloved, etc. And he had asked for Claire to come and see him before he died. Claire checked in with his family and said, you know, “Is it OK?” And they said, “Oh, please. We can’t be there. And we’d fight anyway, ’cause which one of us is gonna go and sit with him?” And Claire’s got a beautiful singing voice. So, she went in full gear, and she was allowed to touch him. So, she held his hand, but obviously plastic and all the rest of it. And she sang him through his last moments…. It’s such a poignant personal story about letting go of a dear friend, and also, she feels it was such a privilege. Such a privilege. And I mean, she’s high-risk herself. So, I thought it was a courageous thing to do and a very loving thing to do, you know. 

CHRIS: Yeah. 

JULIE: I do know that in some contexts, when they couldn’t get family or friend in time, the person is just allowed to die. But what they are doing is giving them enough medication to put them out of their agitation. So, they sleep through the last moments. What can we say? 

CHRIS: Yeah, there’s not much to say after that. Mm

JULIE: But there have been some very loving people who are working on the front line who take a photograph of the person in repose. And they’ve been putting something personal on the body, garments of clothing sometimes or something that the family have given them that’s been cleaned up to within an inch of its life, you know…. We do what we can, don’t we? We do what we can. [pause]

JILL: Yeah, well, I think what we can do is we can continue to talk.

JULIE: Yep.

JILL: We continue to believe that everybody’s life is worth something. 

JULIE: Totally.

JILL: Mmhmm.

JULIE: Yeah.

CHRIS: Absolutely. All right, Julie, thank you.

JULIE: Great to see you both.

CHRIS: Bye.

JULIE: Not dead yet.

CHRIS: That’s right. [laughs quietly]

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 Credit:  “Multiverse” by Ketsa. (Source: freemusicarchive.org. Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License)