Interview Date | March 31, 2020
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Jill: Welcome to the DisTopia Podcast where we look at disability from the inside out.
My name is Jill Vyn and I am the co-host 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 supported by the Ford Foundation.
The My Dearest Friends Project 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.
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Anthony: I’m Anthony Tusler. I identify as being a person with a disability. I have a spinal cord injury since age 5 and what I say is I’ve had a disability since age 5 but I’ve been a disabled person since age 26 and that’s when I discovered the disability rights community and really started to publicly identify as a disabled person and take disability on as a political-social identity that was key to who I am.
Right now it’s fascinating that we are, on one hand, dealing with the COVID-19 virus in this world of social media and, at the same time, exactly the same time Crip Camp comes out on Netflix. It’s a stunning combination.
I don’t think that I’m infected with the virus. We’ve done a good job of sheltering in place. I’m 72 years old so that means that I’m in high risk. I’m a crip with…by the way I use the term to describe myself and my brothers and sisters in the movement and if you identify as able-bodied do n’t you dare call me that unless we’re really tight. As a crip I am more vulnerable to the virus and so I’m being particularly careful as is my wife and we’re doing all the things that they say to do. We’re not quarantining our mail in the garage for three days like my sister-in-law, but WHO says we don’t have to do that.
Anyway, to get back to this convergence. If Crip Camp had come out, I don’t know 5, 6 years ago certainly 10 years ago, it would have needed either to be on PBS public broadcasting because that’s the only place that documentaries show the American experience and I think there’s another masterpiece, there’s other PBS programs. Would have had to show there or in the theater. And, so, with the lock down, social distancing, 10 years ago Crip Camp would probably not be on PBS, there’s a chance it would but it probably wouldn’t have been and it would have had no theatrical release and it would have died a (inaudible). Jim LeBrecht and Nicole Newnham have put so much time, energy, love, into this film and it is so incredibly powerful to show who we are and what we’re about that to have missed that would have been yet another heartbreak. At its core, to my mind what Crip Camp is… When Jim LeBrecht told me that he had 5 ½ hours of video recordings of a camp for disabled people in upstate New York from the early 70s, I knew that he had discovered a gold mine because there are so few photos. I mean, I tried to take a number back then but was not real good at it. And no videotape that I know of because I remember those days with video and those were portapacks, it’s what they were called. Sony made them and they’re these big clunky machines. And here’s this group of radical videographers were at Camp Jened. So I knew that it was going to be stunning. I had no idea how radical Camp Jened was. It makes my heart hurt, it doesn’t break my heart. It makes my heart hurt that I didn’t get to go to Camp Jened. That I haven’t been able to go to Camp Jened. I mean the closest thing is… Chris, you and I got to go to SDS. I mean I made up t-shirts that said SDS Summer Camp because that’s what it was. It was our summer camp only with room service and really nice beds. You know… (laughs). We weren’t having to stay up til 2 o’clock in the morning with Judy Heumann figuring out who’s going to make the lasagna, you know. Thank God. That’s the downside of the 60s but also the power of the 60s. So what Jim LeBrecht did, which is not what happens in documentaries these days very much, particularly ones like his is, he had a point of view. He has a point of view and there is a story arch. It starts with his life in Brooklyn, goes through Camp Jened being a disabled person and getting to be around a lot of other disabled people and Judy Heumann who was a force of nature, God knows through to the ADA. Check out the documentary Crip Camp. He has no experts opining about the importance of this. But, he has disabled people saying this is important in our lives so the expert opinion comes through and that expert opinion is our people. Is our brothers and sisters. Is our disabled brothers and sisters. We have been seen stereotypically and negatively for the whole time I’ve been on this earth. You know, 72 years old. I was born in 1947. Since 1952 I’ve had a disability. Part of the reason I didn’t identify as being a disabled person back in the 50s and most of the 60s is because it was the image in society is so negative about us and I knew that was not my experience. I did occasionally call myself a cripple. Have you read Judy Heumann’s article that she wrote in the 70s about Why I Call Myself a Cripple?
Chris: Not yet. No, I have not read it.
Anthony: It’s powerful. It’s good. It’s good stuff because she..it’s what we’d expect. It’s a tough hard word and it describes our experience. I know that Judy when she’s representing us out there in the world as a world leader doesn’t call herself a cripple, but I know in her heart cripple has a place. So, I did call myself a cripple because it was a tough word. It wasn’t until the early 70s when I met another disabled person, a wheelchair user Steve Diaz who was hipper than I was. Once I met a wheelchair user who was hipper than I was, I realized that I could do this. That I could call myself a disabled person and still be hip, slick, and cool. That was my prerequisite. I did not want to be one of those people who was dressed by his parents poorly with a Mickey Mouse lunch box to call myself a disabled person. When I found that I could still take shots of tequila, smoke dope…hey, I’m down with this and that’s what was happening in Berkeley at the same time in the early 70s. So, that’s the authentic voice. My authentic voice and I don’t see it, you’re right, I don’t see it much in the discussion of disabled people in the all right, twitter verse, liberal media, I mean not literal media because I don’t believe there is much of that MSNBC. I don’t see much talk of us anywhere with an authentic voice with people with disabilities.
Chris: Why do you think that is, Anthony? Especially now during COVID-19? Why is there that space where we’re not invited in? A lot of us are talking on social media but mainstream media doesn’t seem to touch us.
Anthony: Right. Nobody calls us to get a quote. There’s a bunch of reasons. One is in that arch that Mick LaSalle talked about of movies. There is a time in the 90s, in particular, that it looked like things were going to open up for us. You know, it’s when My Left Foot came out. Coming Home. A bunch of movies. Levi’s had a wheelchair user in one of their ads and he was a cool guy. It was in their Levi’s blues ad which had this cool harmonica music in the background. And this kind of trailed off partially, I think, because of the ADA. So, we’re seen in two stereotypical ways. One we’re still seen as patients. We’re still seen as being under the province of the medical establishment. So when they talk about us in terms of COVID-19, it’s how are we going to be triaged and where are we going to be in the “who gets a respirator” discussion. And, then fairly quickly, thank God, comes in “Oh, but that would violate the ADA.” So, we’re seen as kind of angry, civil rights…I’m sure that the all right has various terms for us. They’ve made fun of trigger warnings at universities. There’s a dean at the University of Chicago for God’s sakes. Somebody who should know better who made fun of trigger warnings. That’s for people with disabilities who get triggered by stuff and why not take 10 seconds to give them a heads up that there might be some ugly shit appearing in your presentation today. I mean it’s like I see a lack of empathy. I see a lack of humanity and I think it happens because we’re scared. Lindy, my wife, went to the store yesterday and she went really early cause there’s lines at our supermarket, our upscale supermarket. God forbid we should give up the sliced turkey, the organic turkey that I have for lunch everyday and have to eat some run of the mill shit. So, she went to the store and she discovered that there was…we needed brown sugar because I have brown sugar in the morning on my oatmeal. No brown sugar. No white sugar. No flour and no yeast. Stores were just wiped clean and that’s because people. Two things. One, people are really bored and I know a good friend of mine Larry Roffee back East. I get to see what he’s cooking for dinner every night and it’s really interesting because he’s bored and he’s cooking a lot interesting stuff. And so people are baking. They’re doing a lot more baking and when they go to the store and they start seeing flour supplies go down, their immediate response is, “I better buy a little bit more flour so I’ve got some ‘til the end of the month.” That is a fear response. It’s not a panic response. It’s a fear response because we try and take care of ourselves. When we get this fear response, we look around and most people say, “Well, we need to take care of people with disabilities and I need to take care of my family. I need to take care of my immediate community which does not include people who think of themselves as disabled people.”
So, in this COVID-19 we’re relegated to medical and civil rights and there’s no place for kind of the nuanced. Well, there’s no place for nuance. I mean, have you seen it? I mean, not much. I mean, one of the podcasts I follow is FiveThirtyEight. Nate Silver use to be at New York Times and is a statistician and he takes a long view and the whole crew he has together now at FiveThirtyEight take the longview. I can listen to them because they’re not saying “Oh, this could happen.” They’re saying, “Statistics show us and here’s the probability of this, that, and the other happening.” It’s not…it was during one of the political seasons they called us bedwetter Democrats and that applied to me. I’d see something on the news that would scare me to death and I’d be, “Oh God.” It scared the piss out of me, you know. So, I find nuance where I can. But a lot of people are watching television. Fox News I’m sure is full of a lot of hand wringing. I’m sure there’s a lot of social media and twitter that’s hand wringing. There’s no place for us. There’s no place for a nuanced view of us in this environment, of anybody. So you get something like Crip Camp and I think what that does is it builds on that civil rights fighter persona that is not real well defined in the culture or probably even for you and me.
When you leave the house, if you get to leave the house ever, we don’t get to, we don’t live in an environment generally. You’re in a university so you get to have more of it than I do. When I’m with my spinal cord injury support group I get to live it, but rarely do you and I get to live as free and proud disabled people. We get to live as assimilated disabled people. You know what DuBois two-faced. We get to put on our assimilated disabled person face. I was in a rehab unit a number of years ago when I got shoulder surgery. It was Kaiser’s Rehab Unit. It’s a big unit. It’s been doing for a long time and the doc that I had kept saying to me, “I can’t believe how cheerful you are.” My first thought in my head is “screw you”. My second thought is “of course not because what he’s seeing is new disabled people. He hasn’t seen disabled people who’ve been living this for a long time who’ve learned to become ‘chipper crips’.” You’re a chipper crip. I’m a chipper crip. We smile when we go out in public because people treat us better when we smile. Even if on the inside we’re going, “This is a horrible day and I really don’t like it and I could murder all of you if I was that kind of person. But no, I’m smiling and saying thank you and excuse me could you get that door for me. Thank you.” We live that assimilated life and so I don’t think we as a community know that authentic freedom fighter personna. I don’t think we live it. If we could put it on in the same kind of way that we can our assimilated selves. There’s times when I go down to Berkeley. And we’re talking. You’ve been to Berkeley.
Chris: Yeah.
Anthony: Did anybody look at you when you walked down the street in your wheelchair? No! I couldn’t believe it. I walk down the street and nobody’s even glancing at me. “Hey, over here. I’m a unique individual in a wheelchair. You usually look at me. Pretty girls smile at me.” Not at Berkeley. I’m invisible. It pisses me off.
Chris: (Laughs) This assimilation question is a really interesting one. A lot of the folks that we’ve talked to (are) thinking about, well, is there potential pivot in the culture right now because of COVID-19? In particular, is there a pivot point for disabled people to gain a different space in culture because we are as many of our responders have said, We live like this a lot of the time.” So I’m curious about reverse assimilation. Because we’ve been monitoring our world. We’ve been, the disabled community has been online perveyours for a long time; home for a long time. So, I’m curious if you see a potential throughout this shitty moment that we’re in. Is there a potential for some other assimilation to happen to our community instead of the other way around?
Anthony: I think that it’s interesting to look at this as a pivot point because I think that it is. I don’t think that it’s COVID-19 because I don’t think there’s a lot of room there at least right now in what people are saying and worrying about people dying. But I do think that because of COVID-19 and social isolation that a lot of people are home and I don’t know about you but I get “friended” almost everyday on Facebook which usually I’m not and it’s because people are spending a lot of time online and going, “Oh, here’s somebody interesting. I’d like to friend him.” So, with social isolation we’ve got this ramping of the use of social media. I’d love to see the statistics. I wish Netflix. Not Netflix, but I wish Facebook would share them. I’m sure it’s double or triple what it usually is and at the same time Crip Camp’s come in and it’s given us a voice as something to point at.
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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.