Podcast

Interview Date | April 20, 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 pulsing electronic music that plays for the next few sentences]

CHERYL: My dearest friends, I shut down when I’m scared. I’m alternating between overworking, lying on the floor wondering, and answering your emails asking how I’m doing. Thank you for asking. Will people in power stop to wonder who is not getting the emails asking how they’re doing?

I mean, I know the answer to that is no, they won’t. But anyway.

My name is Cheryl. I’m in a closet right now. I am a podcaster and a freelance audio producer. I produce for the Disability Visibility Podcast and have my own podcast called Pigeonhole. I’ve made some documentary films, but really, my career has shifted a lot more into audio description. So, writing, recording, editing, putting it all together. And captioning. So, even though I do some content creation, I primarily do access. I do consultations when I can, to get people to consider disabled audiences and Deaf audiences before they start, as they’re writing their budget. Like valuing these audiences, whether it’s for entertainment, news, documentary, any of that. That’s what I love to do.

And also, I have the distinct and amazing honor of being the transcriptionist and a new audio producer on this podcast that I’m on right now. We had just been connecting about bringing one of my documentary films, Who Am I To Stop It to Grand Rapids. Y’all did more work than anyone I have ever partnered with to set up this incredible tour: Multiple universities, multiple different groups, different workshops, and seminars. Of course, all of that went on hold when the pandemic hit. But what is cool is that we were just working with each other, and so we were kind of on each other’s radars. And then I think you reached out to see if I would transcribe this podcast. And I did a couple, and then you’re like, “Actually, you wanna edit it too? ‘Cause we’re busy over here.” So, here we are.

Wait, what? What is that? That’s my pajamas. Hang on.

CHRIS: Are you in a closet?!

CHERYL: Yes, I’m in a closet.

CHRIS: OK, good. That must be where all of your best audio happens.

CHERYL: I record everything in the closet, yes.

CHRIS: Do you really?!

CHERYL: Yeah. Yeah. Actually, I mean, I’m just using my phone right now for Zoom. But I have…. Oh, shoot. Somebody’s calling me.

CHRIS: [chuckles]

CHERYL: [laughs] I don’t know if you can see it, but there’s a microphone with a pop filter in this. And then there’s like an 8-layer filter thing that I stick my head in to absorb any kind of reverb and noise and stuff.

JILL: Wow!

CHRIS: I tell ya. I usually just put my head in a bag! But that’s it.

JILL: [laughs]

CHERYL: And I don’t have a blanket over my head right now. But when I record for my podcast or do audio description, I also have a blanket over my head.

CHRIS: Nice.

CHERYL: Yeah.

CHRIS: Nice.

CHERYL: [laughs]

CHRIS: Jill, maybe we should do that.

JILL: Yeah, maybe.

CHRIS: You think?

JILL: Yeah. [laughs]

[pulsing electronic music break]

CHRIS: What does motivate your work?

CHERYL: I want to create captions that are as rich and beautiful and fulfilling as the film is for non-caption users, which you can never do because it’s not a perfect translation. So, you asked what motivates my work. There’s some kind of, I don’t know, righteous fire in me. What ends up happening a lot is filmmakers write back to me and say, “Hey, you need to fix this typo.” And I’ll write back, “Not a typo. Literally what the person said.” And they’ll write back, “Yes, but I need you, that’s not a word, or that’s not grammatically accurate. I need you to make it make sense.” And I’ll write back and say, “My captions need to be culturally responsive, and I need to honor what the people in your film said. And I need to give caption users as equitable an experience as possible and give them the same film. You put this in the film for me to hear, and I would like to put it in the captions.” And then I pull out my linguistics background. Also, regional dialects are legitimate, so don’t come at me telling me that somebody’s different pronunciation is not a real word. So, I get very righteous about it because when interactions like that happen, it’s not malicious, but it’s about racism and ableism and classism. That’s what’s coming up when I hear people talk about, oh, that’s just messed up grammar! I want to show that we can express fairness and that this whole idea of, quote-unquote “correcting” someone’s speech, that’s actually not fair, and it’s not true to what you made. And so, I get motivated and excited by these arguments that I have with filmmakers, and I often lose them.

I won one a couple days ago when I said no, dialect is dialect and dialect. All dialects are legitimate. All language is illegitimate. And this person literally said this thing. The funny thing is that I’m from Texas, and the person in the film said something the filmmaker thought was weird. I’m like, that’s actually what I say. I’ve never said the other version of it. So, I don’t need a linguistics degree to tell you that that is a legitimate way to pronounce that. I just want experiences to be as equitable as possible. That’s what motivates my access work.

I think with the content that I create, my podcast and my documentary films, I get fired up by making stuff that’s non-medical. I’m so tired of the medical stuff.

JILL: Where did all this come from?

CHERYL: I hit my head. [chuckles, pauses, then laughs] None of this. I didn’t have any of this before I hit my head. Well, no, I mean, I was a soap box kind of person before, but I wasn’t quite as left-wing. I don’t know. I mean, I joke, and I say I hit my head. It did change my personality. And it makes me kind of obsessive and ultra-either I can’t focus at all or I focus too hard to the point of running myself into the ground. And that’s from hitting my head. That’s from the brain injury. But the brain injury brought me into the disability arts community in Portland in a way that I wasn’t before. I was already in that scene, as they called me a stand-up. I think people called me a walkie also. I was in the mixed-ability dance community in Portland and had done mixed-ability theater stuff in Austin before that but as a non-disabled person. I had left the scene a little bit, but coming back into the disability art scene, but this time feeling like an insider and being treated like an insider, I just got a whole new taste of things.

And that’s when I started learning about accessibility much more deeply and then learning that wait, captions. Captioning. Hmm. That is a career. And I could tap into my love of linguistics, what I studied about language and speech acquisition, what I’m learning about, you know, trying to learn about anti-racism, and my lifelong obsession with typing. That’s a career? I think the fire just fuels itself. And yes, lifelong obsession. I used to put myself to sleep at night as a child by touch typing in the air messages to myself. Doo de doo. [hushed tones] I’ve never told anybody about that.

CHRIS: I love it!

JILL: I have to know what your word per minute count is then.

CHERYL: The last time I measured when I was really fast, I was at 90 words a minute, which is not like extreme for computers. But I’ve got carpal tunnel syndrome in both arms. No surprise! I also have a ligament condition that just makes lots of joints floppy and painful, and my typing speed has gone down quite a bit. I have a lot of hand pain if I type too much. But I’ve got accommodations, and I crank it out.

CHRIS: So, you’re part of sort of an inter-abled art scene in Portland and then in Austin. And then you have your accident, and you become a disabled person. And then you said, you know, you had this sort of insider view. I’m so curious about that. That must’ve been a very interesting time of life.

CHERYL: I can tell you, you can’t ask for better fortune than to already be in this group and have friends and people you love and respect and enjoy disability art. And interestingly, I was one of those people, like many, who would say before, “Yeah, I mean, I’ve got this thing, but I don’t have a disability.” So, I have a voice disorder, and I had a major surgery on my vocal cord and voice therapy. And so, generally speaking, you can’t hear the voice disorder anymore. But I have developed more vocal cord cysts since then. And so, my voice can be very fragile. I had severe laryngitis for about a month this winter. Just here you go! And I thought, oh, my god, my career. How am I gonna be an audio describer? I sound like I just spent all night smoking cigars in a bar. This is, what am I gonna do? Before the surgery, my voice was a wreck for a year, a couple years, but I don’t have a disability! I can’t do my job. I can’t be heard on a phone. I have life activities that are severely limited because my voice doesn’t work. But I don’t have a disability ’cause it’s not like that.

So, I was one of those people who thought that and said that. Coming into the disability community so intimately and learning how fucking ableist it is. Well, let’s see: I check off this impairment as disabled enough and this one not! I mean, medically, it is disability. And I lost a job when I asked for an accommodation around my voice when the voice disorder was more active. Being part of the disability arts community and coming into it the way I did allowed me to see the depth and breadth and richness of what disability is, to come to more understanding of how insidious ableism is. For instance, “I’m not disabled like that.” What does that mean? [chuckles] What is this ranking shit about? And I appreciate, I appreciate having painful things like that uncovered and being able to learn I could have a better attitude. I could have a more compassionate attitude.

And I never had to devalue myself after the brain injury. Yeah, I hated my life. Yeah, my life was hard. I hated being confused all the time. I hated being lost all the time. I hated that I lost all my friends. But I never felt like I was an inferior person because I had already learned about that lesson from the disability arts community: that there is no measurement of ability or skill that correlates to your worth as a human. And I think I fared a lot better than many people with brain injuries who didn’t have a disability before or close disabled friends who have to go through not only the impairments and the recovery and the loss of work and the transition and all these painful things, but then also inflict so much ableism on themselves because they haven’t been exposed to a different way. I had it very lucky.

JILL: The ableism is something that I think that word is not as known as a concept in general community, whether you’re disabled, non-disabled. I just don’t think it’s a word that we use in common language, and I’m wondering if you could talk about that.

CHERYL: For me, I find it impossible to try to define ableism without bringing up racism and classism and sexism. I think that it’s not a good idea to define ableism without tying it to these other things because they are so interconnected. For me, ableism is about attitudes or actual discrimination, things that devalue disabled people or that kind of assign a disability to someone who doesn’t have one. And that’s where it really ties into racism. So, you know, our country was literally built by Black people, Chinese people, other people of color and by destroying Native communities, because the white people of the time said, we are superior humans. We are more human. They are inferior. They’re closer to animals. So, therefore, they’re not fully able-bodied people. Or they are not smart, they are not principled, they are not good workers, they’re not capable of living just the good life that we know that real humans are capable of. And so, we can justify enslaving people by saying that they are deficient in something. And so, why treat them like real people, because they’re not real people. Our country was built on ableism. That’s ableism. Yes, it’s white supremacy and racism, through the lens of ableism or vice versa.

I find that it’s really easy to say that, “I disagree with you, therefore you are stupid or you are crazy.” Rather than, “You’re principled, and we have different principles, and I don’t agree with you.” But we try to label people as inferior and mentally deficient simply because we disagreed with them. And that’s also ableism. Housing discrimination is ableism. Saying, “Ooh, I don’t think I’d ever date somebody who uses a wheelchair,” that’s ableism! Like any of these things where you are ranking someone who you assume is able-bodied, you’re ranking them higher than someone who is disabled or you assume is disabled.

Somebody’s calling me. Decline. OK. I’ve gotten— Look. Nobody calls me. I’ve gotten two phone calls since this started. Y’all are already just fostering this connection that’s just in the air. [laughs]

[pulsing electronic music break]

CHRIS: So, let’s talk COVID for just a minute. So, what’s life been like for you? What’s the transition been?

CHERYL: Uggggggggh. I think it’s horrifying. I’ve become more perseverative. I get on something, and I can’t stop. My eyes are watering. It’s past my bedtime. My body is tired. I can’t stop. Or I can’t start ’cause I’m just sitting there thinking about something else. I see my inbox, and I just scream at it. I don’t even know who wrote me or what they said, but just, “Fuck! Stop! No!” So, there’s this constant backdrop of, “No! I can’t! No!” Just regardless of the topic, there’s this voice yelling no in my head. I find that I am thinking about other people a lot more than I usually do. I’m sure I’m still thinking about myself. I’m not selfless, but. I sit here, and I think about, aw, I’m a fan of decarceration anyway. It’s like burn that shit down. Burn, burn, burn, burn it down. And now I just sit here, and I freak out. Oh, my god. We have to let people out! You cannot social distance in a prison. You cannot wash your hands constantly in a prison. You don’t know where, the people who do come in and out of the prison, you don’t know who’s breathing on them. And then they’re coming in, and they’re breathing on these people who are fundamentally dehumanized by being in this setting. They cannot protect themselves from being breathed on or touching surfaces that someone else just touched. And I can’t stop thinking about unhoused people. I can’t stop thinking about—

And this— I sound, I mean, I sound like a piece of shit right now. Like, oh, I’m just thinking about the marginalized people right now! And I’m sitting in my closet in my beautiful, very comfortable apartment. I have money for rent. And I keep thinking about, you know, the 1%. I’m like, can you please consider redistribution of wealth? If you haven’t before, is there some way? And the other day I was like, why is my bank account going down? I’m still working. I mean, yeah, I’m giving discounts, sometimes up to 90% to some people, but I’m still working. Where did my bank account go? And I’m fussing and fussing and fussing. And then I realize ’cause I keep donating to the Disability Justice Culture Club. I keep donating to different groups who I feel like can reach people who are not working right now and maybe weren’t working before. Now, of course, I’m freaking out because my bank account went down so much. And then I tell myself, but you have a bank account! So, I’m just fussing all the time. I fuss, fuss, fuss, fuss, fuss all the time.

I don’t like going outside. Sometimes I get terrified. And people tell me, “Don’t worry. If you practice social distancing, it’s safe to go for a walk.” I’m like, you don’t understand my mind. My mind doesn’t want me to go outside. Therefore, it’s more healthy to stay inside. But as someone who worked from home and wasn’t very sociable anyway, if you just observe my life from the outside, my life doesn’t look that different. But my inner life has a lot of turmoil and deep, deep grief for what people with fewer privileges and resources have than I. I’m extremely low risk as far as the scientific information we have right now. And I have people in my life who are extremely high risk, and I just lose my shit thinking about that.

CHRIS: Well, and it is that inner life that so many of us are, by necessity, getting to know much more than we ever had before. And so, it’s resonating with me, I mean, 100%. It’s OK. You know, it’s OK to take a nap like in the middle of everything and not have a reason. Because honestly, it’s that constant thinking, that constant reacting that makes it really hard.

Now, what are you seeing in the news about disabled people? What are you thinking about what’s happening right now in the news, and what’s been your reaction?

CHERYL: I generally limit clicking on things on Facebook, I don’t know the source. If I don’t know the source, I’m not clicking on your thing. I don’t know who wrote that. I always tell people I’m a captioner and audio describer and always forget to say that I’m a transcriptionist too. I don’t know why I forget. Because I am also a transcriptionist, and I edit and produce for Alice Wong’s Disability Visibility Podcast, no matter what I want during my day, I am exposed to these stories and to the news because I am transcribing all these podcasts. Alice has done multiple extra coronavirus-related episodes. Center for American Progress Action Fund’s Off-Kilter with Rebecca Vallas, they’re doing a bunch of extra coronavirus things. And a couple of other podcasts, and who knows if I’ll remember what they are. So, I can’t get away. If I’m going to fulfill my job duties and give into this perseveration that I have, [chuckles] I’m going to be exposed to it. And what I appreciate about Disability Visibility Podcast and Off-Kilter with Rebecca Vallas is that they are focusing on disabled people, primarily a lot of disabled people of color. And so, I’m hearing the stories there that I want to be hearing that I’m not hearing other people talk about from their mainstream news consumption.

These are such precious, precious, valuable resources. So, I appreciate this exposure. But I also break down regularly while transcribing these podcasts. It’s so fucking horrific. And it’s not just the virus that’s horrific. It’s our country’s response, our government’s absolute disdain for the people who live within our borders that is so grotesque. And there’s been a couple of other webinars and presentations that I’ve been to that centered Native disabled people, disabled people of color, where they’re given the platform and the space and the time to speak unfiltered. And that, it, there needs to be much more of that. That’s the stuff that I want to be hearing even though it’s gut wrenching. It’s a luxury to sit in my apartment and have my gut wrenched, and that’s the worst thing that happened that day. Deyanu. [laughs]

Do you know the word “Dayenu?” It’s a Hebrew word. And it’s from Passover, which we just had! Which is awkward because it is the story of please let the angel of death pass over my house. And we could not meet together as Jews in the same room unless you were already a family living together to tell that story of liberation from slavery and then liberation from the Angel of Death and all the other plagues. It’s just so weird that they are corresponding in time! Dayenu is a way of showing gratitude. It’s like I try to make it one of my driving principles. And it’s not just thank you. It’s oh my god, who the hell am I to deserve this? And the other part of it—and we sing about it at Passover—the other part of it is, it would’ve been enough. This one thing that you did would’ve been enough. How could I ever ask for anything more than this? Oh, my gosh. I got a second thing?! That’s enough. I would never ask for more! I would’ve been happy just with this first little bit that got me one step closer to liberation. But oh, my gosh, I got the whole thing! Wow!

So, when I start to get super like feeling physically ill because of the thoughts in my head, thinking about people who are absolutely not being cared for, I’m not helping them by lying on my floor crying about them. That doesn’t help them. So, let me see what I can do to reframe things so that I can get back to work. I will think about that Dayenu principle and get myself back into a gratitude frame of mind, which can get me back to work.

JILL: Those moments of gratitude also, I think, are interesting. But it’s leading me to think of where you’re seeing hope. You’re transcribing and you’re interacting and you’re immersed in the disability community. Where are the glimmers of hope?

CHERYL: I have a lot of trouble seeing hope right now or feeling hope right now. I’m a jolly person by nature, but I’m not an optimist. I am quite a cynical, pessimistic kind of person. And so, where do I see hope? I mean, the mutual aid stuff that people are doing, I see groups like the Disability Justice Culture Club in the Bay Area and other groups. It is the people who are working outside the system and just meeting each other’s needs, picking up and delivering groceries, sewing masks. Sandie Yi—I forget the collaborator Sandie is working with—they are making homemade masks, prioritizing that disabled people and caregivers of disabled people would receive those masks. But because I’m not an optimist, I see stuff like that, and I think, but why the fuck has it come to this?! Why? Why has it…why is…. Why are resources not being distributed by the government? So! Hope is hard for me, but I hope that I have is that—

So, joining the disability community through acquiring impairments, what you can learn from that is the idea of precarity and how precarious life can be. You don’t know when something’s going to happen, good, bad or whatever. Life is precarious. And if you’ve gone a long time with everything going your way, that’s extremely good fortune, and that’s beautiful. And I wish that would happen to everybody. But life is precarious. And I think that the disability community has that lesson learned as a gift to other people if they will accept it. There is a lot of injustice in who has resources and who doesn’t. The existence of viruses themselves, that’s not an injustice. It’s how we handle them that is an injustice. But life is precarious. We coexist with viruses and bacteria. We just do. And to think that you are owed a perfect life, you’re in for a terrible experience when you do face things not going your way necessarily. Disability community is not the only community that understands this. I mean, obviously, the immigrant and refugee communities. There’s a lot of communities. It’s not unique, but it’s what I learned by joining this community.

[pulsing electronic music break]

CHRIS: Where are you finding joy, man? What are the joy moments?

CHERYL: Ohhh. My cat is the best. My cat is the actual best cat, but also the actual best living creature. So, anybody who needs my email address ’cause they wanna fight with me, we’ll announce it at the end of this episode because I will fight with you. We can start the fight by just sending me pictures of your cat. That’d be great. So, I take just extreme pleasure from my cat. He is, he’s my everything. And the birds. The birds in my yard. I haven’t loaded the feeder in weeks because I don’t want to go to the store for birdseed. But I don’t feel bad because it’s spring, and they have food. But the crows, when my children come by, they do still get their peanuts. They don’t come by as often because there’s food.

I really get a lot of joy from spending time with my boyfriend, Oliver. We live far enough away that I can’t get to his house on my own without taking the bus, which I haven’t done. I’ve stopped taking the bus a couple months ago because I don’t have to. So, he comes over here. Or I’ll ride my bike halfway there, and then he’ll pick me up. So, we don’t come into contact with anyone else, and we have made the agreement, explicit agreement, that we would act as if we do share a household. So, we are not socially distancing from each other, which is a great fortunate thing.

Yesterday, I went to my friends’ Grant and Jonathan’s house. We had a silent day. And so, we stayed physically not close to one another. They live together, so they were near each other. But I stayed sort of away from them. And we didn’t talk. But sometimes we danced. Sometimes we sang. And I just pulled weeds in their yard until my arms, I couldn’t really grip anymore. And at one point, Grant and I just lay down on the grass sort of near each other and fell asleep in the sun, which on its own would be amazing. But we woke up at the exact same time. And that moment of being able to lie down in the sun just free of obligation next to my best friend. And I couldn’t see their face. I could only see their eyes. No, they had sunglasses on! I couldn’t see their face. They had the mask and the sunglasses. But to know that I was taking a nap next to my best friend and the like jolt of connection I felt when we woke at the same time. When we both made that, you know that noise you make when you wake up? Your breathing changes, and you’re like, “Oh.” We both rolled over and made that, “Oh.” And it just, it just made my heart soar. Like, I am so lucky to have a best friend and to be able to lie in the sun with my best friend today. So, things like that bring joy.

JILL: Yeah. Connection.

CHERYL: Yeah.

JILL: Yeah. That’s beautiful. It’s been hard for us to be completely objective, in specifically recently when there’s groups of people protesting and when you see groups of people making decisions. And I’m curious how you react to those.

CHERYL: I haven’t clicked on those articles, but I’ve seen the headlines and the pictures of the people protesting. You want the economy to kick start? Get the top 1% to distribute their cash to you. I think we should not be working. I think everyone should still have an income. Nobody shoulda lost their job. OK. That’s my opinion. I do get mad because we know what the fuck viruses are. We know how they spread, and we know that this one is highly transmissible if you are breathing near each other.

Growing up, my dad was really into look out for your own. I had a minivan for a short time. I was gonna move to Minnesota, and I was like, “Dad, I can’t take a minivan to Minnesota. Like, do you know? It would just take forever to heat up a whole darn minivan. I was thinking maybe I should have like a pickup truck, just small, just heat up just the part that you need.” And he actually said, “Don’t worry about the other guy! The heater will be blowing on you, driving the thing! If the other guy in the back is cold, who cares?” Did you literally just tell me if I want to give a friend of mine a ride somewhere that I should actually not care if they’re cold in Minnesota in the winter?! Oh, my god! It’s cold in Minnesota, Dad! I know you live in Texas, so you may not understand how cold Minnesota is. But that attitude of who cares about the other guy is what I was raised with from my dad. And from my mom, she was kind of the other side of, who else can we look out for? Who can I bake cookies for? Who needs a cookie? I’m baking you cookies. And my mom is constantly crocheting and knitting these blankets and giving them to non-profits for them to auction off for their fundraisers. So, she’ll make this thing that could probably sell for 300 bucks. And just, “Here you go.” Just give it away. “You raise your money for it. I don’t know who gets it.”

So, I fell in line more with my mom’s side, which is I actually care about “the other guy.” [chuckling] That phrase, I just can’t with it. And I feel like the people who are protesting that say, “Open the economy now. Let us go back to work,” maybe are coming from the side more aligned with my dad, which is, “I’m looking out for me and mine. I don’t see what the fuss is about. I still feel healthy. Let me go do this.” And so, I am aggravated because I would like to not get COVID-19. That probably goes without saying. But my responsibility is to not give it to anybody else. And that’s in line with those principles of looking out for my human family and my cat family, not just my immediate nuclear family or my blood family. And then I think some people have a tighter-knit circle of family they’re looking out for.

CHRIS: I understand what you’re saying, but my heart is having a hard time believing it.

CHERYL: I know. Mine too!

CHRIS: Yeah.

CHERYL: Mine too! And I’m glad that you said that because I should interrupt myself and say I get enraged when I see it. I feel heartbroken. I feel sad. My eyes well up. And I think, don’t you dare breathe on anybody if you might have it. Because you have spread it and they’ve spread it and they’ve spread it, and you know who’s going first. You know who’s most vulnerable and yet. And I can hold that tension. I can have that outrage in my heart. And then my brain says, I will not talk about the protesters as if they are inferior to me. That is a tool of oppression, is to say I disagree with your politics, therefore you are inferior to me. But silencing accurate scientific and medical information and limiting access to resources for people to be educated on what to do and how to stay safe? Fuck the government on that one.

I also think that if the protesters truly embraced the arguments from the disability justice movement, they would stop protesting this particular thing, and they would be applying much more social distance. Because they would say, now I understand why you’re more at risk, and I’m filled with the privilege to be able to say, “I need to go back to work now!” And you know what? OK. How can I pay my rent while not endangering your life? Because your life is worth as much as mine. We had a film decades ago called Lives Worth Living. That hasn’t seeped in. It’s barely scratched the surface for people, this concept lives worth living.

CHRIS: No!

CHERYL: Pre-pandemic, let us not forget that pre-pandemic, this administration was cutting food stamps, was working on that policy to have more reviews for disabled people to keep their benefits. “We gotta check. Oh, you were born with this? But you might have outgrown it. You mooch! You mooch off the system.” And public charge rule. There are policies that are so oppressive. There’s always gonna be people who say this isn’t real. There’s always gonna be people who say Western science is bad.  A lot of the research that has informed some of the things that I’ve gone in for regular different kinds of appointments with my doctors, they were tested on enslaved Black women with no anesthesia. And now I have the benefit of being able to have this procedure without any pain ’cause they perfected it on a group of people who were considered to be not fully human. So, I can understand these insidious, violent histories of Western medicine and still also benefit from it and believe in it and believe in Western science when they tell me that this virus invades people’s cells, and people can die. That’s different from saying that science isn’t real and that we don’t have to believe it and that it’s all fake news unless I like what it sounded like.

JILL: Yeah, this is highlighting broken structures and broken systems.

CHERYL: [laughs] Are they broken though? Weren’t they designed to operate this way?

JILL: Ah. Well, OK.

CHERYL: [laughs]

JILL: [chuckles] Well, then, let’s— You got me on that one. Ineffective. Right. They’re not designed to consider every person.

CHRIS: No. And they’re not designed to bend. I mean, structures aren’t designed to bend. And disability and aging and all the things that make human beings interesting are things that bend stuff! It’s hard to be taken care of in a world that doesn’t bend with you. That’s really the frustrating part, you know?

[pulsing electronic music break]

CHRIS: Are there things that you wanna make sure that people are thinking about and talking about besides all the beautiful things you’ve already said?

CHERYL: I think that whatever else is on my mind is stuff that other people have already said.

CHRIS: Mmhmm.

CHERYL: And I would encourage people to, as they can, consume that other media. So, the Disability Visibility Podcast, the Irresistible podcast, Off-Kilter with Rebecca Vallas, again, because these are centering disabled people, people of color, disabled people of color. Crutches and Spice, one of my favorite blogs ever! Another favorite blog of mine is called…. Your guess is as good as mine what it’s called! Uh, uh Flavors of Diaspora. And it’s written by a queer Jewish autistic person. And it’s been my favorite food blog for a couple of years, but today’s post just like blew my head open about coronavirus and shopping and eating and how the inequities in shopping and eating are highlighted by the pandemic. And so, specifically looking at it within disability experiences. Such a good post. Jonathan Katz, you win once again.

CHRIS: Wow. Good stuff, dude. Thank you.

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: “Refraction” by Podington Bear. (Source: freemusicarchive.org. Licensed under a Creative Commons Attribution-NonCommercial 3.0 International License.)