Podcasts

Interview Date | April 7, 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 away]

TOM: I’m Tom Olin. I’m a, or was a photojournalist. And I’m still working with the photos that I’ve taken through my life of our disability rights movement. I’m secluded kinda naturally in a RV park outside of Austin, Texas.

CHRIS: I would love for you to tell us a little bit about what you have found yourself doing over the last couple weeks.

TOM: Well, this is an incredible time to be in right now, I mean, just for what it is. [sighs] Definitely. God, I’m actually tired. And I mean, I’m tired because I’m so busy. And you would think that you would be the least busy, being secluded and all that stuff. But I have people that are positive, but no one’s died yet.

CHRIS: Mmhmm.

TOM: But there’s just so much going out there, you know. Well, just let me see. An hour and a half ago, Peter Grosz and I were doing a podcast with attendants, and we had one in Chicago we’ve done. We just got done doing one in Austin, and talking about what’s happening with them and about their life and also about the coronavirus and what’s happening today, their thoughts and their fears and their hopes. It’s kinda interesting.

Everyone’s, I think all active advocates are kinda doing something. I think a lot of the activists have different hats on right now. I think a lot of it is working with state, local, national organizations. It’s at that point right now where people are doing things because of the lack of resources and responses around, but there’s not much activism. It’s kind of hard to be in a secluded way of working and life right now. But that’s probably the next thing that we’re gonna be having to do, is the activism. It’s almost like as a nation, we’re rising up to figuring out the epidemic, which, you know, we’ve already had a large epidemic in the gay world way back and when we had the AIDS epidemic. And I think we’re gonna have to look and see and kind of play by their playbook. At that point, there was a lot of different organizations working with the government and all that, and it was always hish-hush and whatever. And it was actually the activists that brought the significance to the world what was happening in the gay community. And that was ACT UP.

What you haven’t heard in our world and I haven’t seen is for us artists, the cultural workers of our community: the poets, the artists, the songwriters, the word slayers [chuckles] come together and start producing some activism there. We still have our windows, we still have our doors, we still have our streets that we can do art. We can make a difference. Because one of the things that is happening, and I’ve been hearing this all over, you know, we’re talking about healthcare rationing. We’re talking about waivers when it comes to education. We’re talking about Medicaid. We’re talking about attendants that need protective wear and increased funding. [chuckles] What I’m hearing from all sides is that one of the reasons we’re in, the disability world is in, such a flux right now is because—I hear this over and over—they did not think of us. They did not include us. They did not talk to us. Well, shit, you know, that’s been happening for some time. And I think it’s kinda all boiled to a point.

I mean, gosh, the bioethics of rationing is something that we’ve all kind of worked on, off and on. And at one time years ago, we were starting to put people on bioethics committees at the hospitals and medical centers. We’ve kind of lost a little bit there. We haven’t put in a lot of energy into that. You know, now we’re right into the middle of it again. But that’s an interesting thing, too. I mean, gosh, there wouldn’t be rationing if we had enough respirators, so. [chuckles] Kinda interesting.

And a lot of what’s happening, you know, some of our leaders, our disability leaders, you know, are there in DC working on all of this are kind of saying oh, it’s the state disability leaders are gonna have to do it. It’s all different things, you know. Every state is a little different, which is true. But we need some national leadership in the disability community on this for sure. I mean, giving it to the states, it’s almost like Trump saying, let states provide, you know. I don’t wanna get into that predicament. But anyhow, that’s kind of what [laughing] is going on in my mind right now!

[electronic music break]

JILL: So, you said you’re busier than you expected. How are you spending your days? 

TOM: You know, this is a interesting time for ADAPT, which I think is probably the most ACT UP-like group in history of epidemics that’ve done something. I mean, who are you gonna call when you need activists? It’s not the Ghostbusters. It’s usually ADAPT. And unfortunately, at this point, we have ADAPT nationally, it’s a very [sighs] I don’t even know what to call it, but we have a lot of local good ADAPT people in Chicago; Detroit; Kansas; Georgia; Austin, Texas. You know, we got good ADAPT groups all over. In fact, it was just a month ago that [laughs] I started to put my camera down. And so, when I go to an action now, I’m kinda like on the front lines. I do carry my iPhone now, so I don’t stop taking. I can’t. It’s impossible for me not to. But I was arrested just a month ago at the halls of the capitol in Topeka, Kansas trying to get Medicaid expansion. And that’s something that’s coming up right now. [laughs] I mean, things are still happening regionally and locally. I just hope that ADAPT will get it together to act nationally in a vacuum of leadership and advocacy, not advocacy. There’s a lot of good leadership and advocacy. AAPD’s doing a great job. Rebecca’s group is doing a really good job. There’s some really good things happening. NCIL, you know. They’re doing things, and it’s more advocacy and not activism. It’s not waking up the people. It’s not waking up people to say, hey! Maybe we should include them, you know. Everyone’s doing some great mail-ins, good texting, hashtags are coming out, good ones, new ones. And so, everyone’s treating each other and all that. But there will be a point where activism, you know, should be a little bit more and hopefully will be more.

[electronic music break]

CHRIS: Tom, what do you think it’s gonna take for a national disabled voice to rise above the hum?

TOM: Ah, a lotta people will have to put aside their egos, [laughs] for one. There’s a lot of things that we don’t give each other enough credit. The movement is out there. But people are… [sighs] they’re not putting it out there to say, hey, the movement is ongoing. Let’s keep on going. You know, we both just saw a great video, Crip Camp that had some great emotional kicks, and there was parts of it that you and I just really enjoyed, really loved. We understand the uniqueness of being together, you know, of the disability community and the importance of activism. You know, we had the 504. That was a very good event. And we had the rise of the DIA, you know. Those were good, good times. I love that movie. What it didn’t do it, it didn’t show us the ways to go on with the movement. And left it at the stairs of the Capitol, at the crawl up. And they had left it at an ADAPT action. [laughs] And it didn’t move it on. It did not move the movement on. That was the only thing that I kind of wish it— It came out just as we need a movement! Just came out just before the coronavirus hit the streets. So, I just hope we, you know, just gotta talk to each other, you know, and create, recreate our movements again.

CHRIS: That’s the first time that anybody’s told us that maybe it could’ve pushed harder to keep the movement going.

TOM: Do you remember how it ended? You remember where they ended up? They ended up in the field where crip camp was. [chuckles] It was just like the movement ended up there, and that was it. And then they rolled on to the credits of people who died and did things, you know. And so, it [chuckles] it was kind of a anti-climactic movement, moment of the movement you could say. I love the people that were in it. I just smiled every time when a personal friend came on and said, great, you know, had great lines. It was really good, but gosh, this is a time when we need to get together, and we need to have that movement go on.

[electronic music break]

JILL: You talked about how now we’re all in our homes or wherever we are. So, how do you imagine activism looking like? Have you seen examples of where there’s glimpses of hope in your mind for the activism that you are talking about wanting and needing?

TOM: Not a lot, but people are, just like you, are doing podcasts. I mean, that’s very, very useful. Podcasts are very, very useful. Right now, there’s a group that’s called the Disability Underground that is trying to get selfies, selfie videos, and they’re what’s happening with individuals. And I think they’re gonna collect them and give them to Congress or do something with them. You know, there’s little things. But I’d love to see, I mean, where’s SDS in all of this? Where’s our great writers? Where are the great thinkers on all of this? We need their words. You know, we need to have some good, good things out there, we need to, so that people can latch on. Back in the Black Civil Rights movement and the ACT UP, they had poets. They had artists. They had things that were going on that people could tie into. And I’m hoping that will happen, you know? As artists, [laughing] we’ve never really been a collective. And when that does happen here and there, we love it, you know. We latch onto it. Almost anything disabled, our community loves. Because [laughs] we’re not out there.

You know, one of the things about Crip Camp, at the end, you feel, oh, gosh. You know, we’ve kinda made it. People are looking at us differently. We’ve done something, you know, all that. And then the coronavirus hits. And it’s just like, oh. We’re back at the bus again. [laughs] Our movement is so far behind still. It looks like we’ve done so much and gone so long just because we get into the video stuff. We get to be seen in video and stuff. But that doesn’t mean that the hearts of people have changed. You know, and in fact, our governor down here [chuckles] just said, you know, maybe the old people and disabled people should just die. I mean, no, we really have not changed the people’s hearts. I always said that, yes, the ADA was like our Emancipation Proclamation, and we’re now, we’re in the Jim Crow era. We’re still a long ways off even though we have glimmers of hope! You do see it. That’s just skin, eye deep. I don’t know if it’s skin deep. [chuckles]

JILL: So, who are you following? If people are taking to social media and other forms of communication, who are you paying attention?

TOM: Well, I am doing a little more Facebook than usual. In fact, now I’m checking Facebook every day. It’s where our news comes from. I mean, there’s other forms, but for oldies like me, Facebook is just the thing. I have a learning disability, so it’s a little bit harder for me to do the other ones. But, you know, I definitely listen to Not Dead Yet or follow Diane Coleman and follow some of the ADAPT people. Marsha Katz always has something, and Janine Bertram’s another person. After a while, you see where the news is coming out of, things that you wanna hear or not hear. Unfortunately, it’s unedited. [laughs] You know, when we had our magazines, when we had The Mouth and when we had The Rag, we had edited versions of what people saw, which are important. And we went along with what they thought was important. It was, you know, they were almost always right. And that’s why they had such a big following in the disability community. Now, there’s nothing like that anymore. I asked Steve Brown, you know, where do you go for your news? He gave me seven sites that he goes to. Who in the world spends the day going to seven sites to get the news, you know? So, I just try to kinda look at it through a Facebook face. I don’t know. I don’t think there’s a good answer yet to where people should get their news or how they get their news. I don’t know there’s a one thing fits all anymore.

CHRIS: One of the interesting threads of conversation we’ve been having with people is, you know, because of COVID, and because the fact that so many of us are in our homes and using digital technology and that in some ways, non-disabled people are getting glimpses at the disabled experience, you know. And there’s hope in there, but there’s also frustration.

TOM: [chuckling] Yeah.

CHRIS: I think, Jill, you put it perfectly last week. Like it could be that everybody just takes the lessons that we’re all trying to get out there and just, you know, they just sort of forget that this is something that maybe we have a role to play.

TOM: That’s why we need Disability Studies, and we need people to kinda tie that and let it go on, have those words that can affect people. No, I agree with Jill. It’s gonna come and go, and we’re gonna be left behind. That’s why ACT UP was so important, is because they didn’t just do a one-time thing. They just put it in the face of people until the people finally got it. And I agree wholeheartedly that this is a great opportunity to get to see how [laughing] segregated we really are! They can feel how we are, I should say. If they can put one to one and make it two, you know. I don’t know. That’s what I say. We’ve gotta have people out there with words to kind of tie that together. You know, I can ask you the question. Where are our writers? Where are they on this? Am I not seeing them? I’m not seeing them. Every once in a while Riva is up there. And great because she’s an artist. You know, there’s some great people out there. I just don’t see enough of them, and there’s a disconnect, it feels like. So, where are they? You tell me, Chris.

CHRIS: We’ve been seeing them in little pockets. I mean, Alice Wong is doing a hell of a lot of good work.

TOM: Yes, she is.

CHRIS: I think Mia Mingus continues to add important architecture to the conversation.

TOM: Yeah.

CHRIS: You know, it’s interesting, the Disability Studies conversation. Once our national organization, Society for Disability Studies, once that started struggling, you know, it has been harder for there to be a collective academic sort of voice in the world of Disability Studies. So, I agree with that. There are some artists who are doing some work. But I mean, I hate to say this, but so many of us disabled people are just making sure that we’re gonna survive. It’s so interesting that you spent some time talking to caregivers on the other podcast that you were doing because every element of disabled lifestyle has been affected.

TOM: Remember Keith Haring? He would get all the images in ACT UP, you know, during the ACT UP phase, there were things that people just latched onto, images, and we need to have those images we can latch onto. And it’s even, you know, it’s even more in our disability community that we do things like that. We find iconic leaders, and we find iconic images, whether it be the disability flag, you know, or something just you’ll see those little flags all over the place, you know. And that’s where the artist community can come on. We need an image that people like it so much, they’ll put it into their windows and show it or go out with their attendant and chalk up a sidewalk with those images. We need, we need things that kind of put us together, not separate us right now because we are already separated. And these podcasts are great for bringing us together. We just have to find all different ways to bring us together. And we need some good leadership out there [laughs] too. We’re just losing it right now.

CHRIS: Well, and it’s so frustrating because what was it, four weeks ago, Judy Heumann was on with Trevor Noah. Like, there’s these moments where I’m like, holy crap! There we are! Like, we did it, you know? But then you’re right.

TOM: [laughs]

CHRIS: It’s like it came and then bam! You get hit with this coronaviruses. It’s like, aw shit. Now it’s 25 steps back, you know? Yeah.

TOM: You gotta be really scared about your respirator. You gotta be scared. [laughing] You gotta be just fucking scared, you know? I mean, it is.

CHRIS: Yeah.

TOM: People just don’t think your worth anything, and you really realize how much worse people think you have.

[electronic music break]

CHRIS: We’ve been watching in England and then in Canada, there’s some real struggle with this rationing coming from the state level because they have state-funded medicine. But here in the states, right, we have civil rights laws that are still going to be enforced. We’re being told they’re going to be enforced.

TOM: [laughs]

CHRIS: But we’re stuck in this sort of like, are we doing better? Do we have a leg to stand on when we say, well, the U.S., we have these civil rights safety structures. So, is that somehow better? I feel like it’s not. But then I read some stuff, and I say, well, oh. Maybe it’s OK. But I don’t know.

TOM: Well, you know, you got the Department of Education saying that it’s OK not to have the civil rights of kids, you know. I mean, they’ve already done that on education. So, why not anywhere else, too? So, yeah, I’d be fucking scared. [laughs] I think the only thing different is that we have the opportunity. We’re the ones who came up with the ADA. And now that’s counted all over the world. We can have some of the best activism involved, and we can get things. The movement can actually do things. I have my hope in the movement when it comes to advocacy. We need the advocacy, but [chuckles] if you have a leader like we have in the White House who is saying for the Department of Education that the civil rights of kids with disabilities, there’s a waiver for that, so. It’s just that slippery slope that our lives are on the line next.

[electronic music break]

JILL: You’re putting out your own call for there to be writers and activists and a new way of activism, actually. What does an online movement look like? What is the conference? What are the artists? What are all the different components that need to be there in order to bring together the people that you’re saying right now, we all work in our separate spaces? How do we unite people?

TOM: Right. Well, I think firstly, you’ve got to have just contact with each other, with people just, you know, just one to one, two to one. I mean, the three of us are a great example for three people to be able to talk together. Scott Nance out of Chicago, or actually he’s out in Arizona right now. But he has a call every, I think, Sunday, where he has about 20 people on the phone just talking. And it’s mostly a Chicago thing. But he’s gotten, once I remember there was Judy and Ian Ingle out of Colorado. He’ll just call anybody just to get them on. A lot of it is mainly just getting people together and talking and making sure that everybody’s all right. That’s just a little local thing, but just the process of people talking together. Yesterday, AAPD had a call-in, and when I was on, there was 365 people, you know. And so, you’re not gonna really organize on that. It was mostly for information sharing on that. But the technology is there, you know. And as long as people can talk with each other, I think we’ll come up with stuff. It’s just putting people together. Because I’ve been around. I’ve lived in so many places, I do that naturally at times.

JILL: I’m of the belief that just by listening, we naturally start to connect the dots. It’s the relationship building that will allow us to create something greater than all of ourselves, collectively.

TOM: There are some good people out there doing things. Yeah, and it’s really important for the elder activists to say something and bring up something. Like myself, I really want the young activists to play a very important part. But with our elders, we have seen and done so many creative things that made our movement. You know, I was just today, somebody was talking about doing a mural in Philadelphia. And I brought up the Philadelphia to D.C. march, which is the most incredible march in the disability world, period! [laughs] People can only imagine people that were in chairs that wheeled, some of them manually, all the way from Philadelphia to D.C. in 14 days! That was just an incredible thing that just happened, movement-wise.

ADAPT and a whole bunch of organizations put on an Olmstead Don’t Tread on the ADA rally. The park services in D.C. said there were 4,000 people that came to it. That’s our largest we’ve ever had. You know, there’s things that are happening in the movement that are incredible, that were long-acting, you know, kept on the movement over and over and brought new people in. ADAPT is still growing. Are new chapters are happening. The movement is there. And we just need, everyone needs to connect to not only their groups that do advocacy, but also the groups that do activism for sure.

[electronic music break]

JILL: How can Crip Camp and the stories told there and other people like yourself be role models for the next generation, who has a different approach and a different level of energy and a different amount of urgency in their lives to be heard and to be professionals, to really be valued? So, maybe there’s something that we can do to bring together the young and the old, the new and the seasoned people together through this process.

TOM: That would be fantastic, wouldn’t it? [chuckles] I mean, that has to be done. We can’t lose leadership. Well, I think one of the things that is unfortunate is that a lot of older disabled that had run different organizations, I mean, I’m glad that we’re still activists, a lot of those people. Are those people fought on the front lines and then became leaders, you know, in the CILs, different organizations within their communities. But one of the hardest things is to keep young leaders involved and connect, you know. We gotta definitely, definitely find those younger leaders. Pay them well.

We were talking about SDS. One of the main things of the one that was to happen or just coming up, you know, one of the things is how to give back to your community. That’s always, that’s always there. And there’s always something about that in every SDS way. But now it just doesn’t relate. And I think, you know, being a photographer, being a visual person, and seeing what photography can do, what images can do, what art can do, what a good songwriter can do in our movement, you know, and what good words can do. You know, that’s where we’ve gotta tie it all together and create something so the youth can see that. It’s right there. It just we don’t, we’re having a hard time [chuckles] getting it together to do. We all have our own worlds, when it comes to artists. And sometimes we’re surviving, just surviving on our art, you know, our cultural workers.

[chuckles] A lotta times, the people in our own community think that our own organizations think that we should do something for free, you know. And the thing is with me, you know, I always think that they should give a little no matter what, you know, just so that they understand that they should give to a cultural worker, whether it be a poem, whether it be an image, whether it be a piece of art. A lotta times they just think it should be free. I don’t know! I don’t even know why they think it should be. But one of the things we don’t, a lot of artists don’t come together is because we’re so into our own things, our own work and scared that we’re not gonna make enough money. Luckily, I have people that like my work enough that I’m supported outside of my Social Security check, so. [laughs] But it’s hard. It’s hard for us all to work together because a lotta times, just the way capitalism is.

CHRIS: Do you think there’s something about the fact that the disabled community is filled with a bunch of different types of disabilities, that that is something that we struggle with to keep us solidified as one group?

TOM: That does play a part. I mean, there are good diversity groups or groups that have a lot of diversity in it. And you’re making me think ADAPT right now, since I’m so close to ADAPT and all that. We have groups, ADAPT groups that are so diversified already that they don’t even have to think about diversity, almost, you know. And then there’s groups that are not as diverse, and they have to actually reach out. And I mean, everyone should reach out for those that are not represented. That should be just a part of our credo, but that’s not a part of our human gene, you know. But it takes work, and it takes friendship to cross that a lotta times. And sometimes we don’t. We have different agendas, but there’s more agendas that we can work with together. You know, in all different movements, there’s just good things that we’re so close together on, and there’s no reason for us not to work together. But yeah, we have the same discriminations, individually that we have that the regular society has, but we should understand [chuckles] it more. For me, that’s another way of how our word slayers should come up and say, give us the for those instances, you know. We’ve taken the narratives of other people so much that we don’t have our own narratives. We don’t write them, you know. And so, when we talk about racism, we talked about privilege and all that, and ableism. we come from an ableist narrative when we talk about it, mostly.

Every once in a while, there’s a glimmer of hope that people would get to say the right words, to say, oh yeah. That’s how we should be saying that. I can say that, and I get to see that. Diane Coleman and I lived in L.A. at a time when disability culture was just starting, when we had Paul Longmore, Anne Finger, Barbara Waxman, just to name a few. Carol Gill, Larry Bosch. The list just goes on. Doug Martin. We just had these incredible people who were making up the words of our culture back then. So, I know it can happen. I’ve seen it happen! The young should be creating this with us, you know. We’ve gotta create all these narratives that they can understand and say, yeah, yeah, this is us nowadays, you know. It shouldn’t be changing all the time. And that’s where I hope we can come together with the youth, you know. Being a photographer, what I’d love for them to do is look at like my photos and them create the dialogue of that photo, you know. They create the narrative of that photo of what it’s saying. They’ve gotta kind of know the history and yet create the narratives.

JILL: I can imagine the creation of some type of exhibition online that includes the artists, the poets, the sculptors, the performance, you know. Where’s that platform where we can bring to life the stories of the artists and their perspectives?

TOM: Right, and also bringing artists together. I mean, god, I haven’t talked to Riva forever. And it’s really hard to get ahold of artists nowadays. Actually, one of the neat changes is [laughs] The Incitement. The Incitement was a newsletter that was put out by ADAPT in the old days that has fantastic articles in it and things. I mean, has our history in it, not only ADAPT, but what was happening at the time. But that started not to happen. I can’t remember when the last Incitement came out. So, they’re trying to do that again. And one of the things it did in the old days, it kinda told what was happening in other places, in other states with other ADAPT groups, what they were doing. ADAPT has always been a community, a local community group, and then we just did things nationally. Then it got top-heavy, you know, and things are doing nationally and kinda left off a lot of the groups around the states. So, everyone’s kinda regrouping again and kinda getting their local people strong and mighty. And so, we’re gonna start up The Incitement again.

I was with Stephanie, and I said, my god! It says 4,000 people! [chuckles] And it was just like everyone looked. And it was just like we had to remember. Oh, yeah, yeah. And we just thought, you know, 4,000 people, we’ll get more the next time. But everyone had this dream of a million march, you know, whatever. Of course, that would never happen. But 4,000 was way amazing. And I looked through that Incitement. And I’ve got pictures, too! [laughs] I’m glad Stephanie is putting out. It has a lotta, a lotta good history in the disability movement in that.

CHRIS: It’s good to know that, for sure.

TOM: It’s a great tool for any historian, definitely, anyone writing history. That’s for sure. OK. [chuckles]

CHRIS: All right. Well, thank you, Tom. Thanks for your time.

TOM: Love you both.

CHRIS: Love you too, buddy.

JILL: Yeah, love you.

CHRIS: See ya, man.

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