Interview Date | March 27, 2020
[peaceful electronic music fades in]
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.
[music fills with emotion, then slowly fades away]
LEROY: So, Leroy Moore, Leroy Franklin Moore, Jr. from Berkeley, California. I’ve been living in the Bay Area since ’91, first in San Francisco, and after the dot.com gentrification, got gentrified out to Berkeley. So, I’ve been living in Berkeley for a long time now. I’m a Black disabled activist, author, and founder of many organizations. But the organizations I’m currently doing is Krip Hop Nation with “K,” the National Black Disability Coalition, and POOR Magazine. And also, an author of many books.
CHRIS: So, how’s it been going for you? What’s this COVID experience been like for you, COVID-19? And maybe we can all just sorta commiserate together on that.
LEROY: Yeah. You know, the situation has been something else. For me, it’s one again teaching how people in power, government has no clue, and they don’t have, they don’t need to have a clue. They don’t learn. [chuckles] You know? I know this isn’t unique to this country, but other emergency situations like Katrina in New Orleans and other emergency situations, people with disabilities have always been left behind. And it’s always the same story every emergency from Katrina to Puerto Rico to today. So, you know, I look at the human lack of preparing and the lack of any regards to people with disabilities, people that are poor, people that are houseless. It’s kinda interesting now is that, you know, everybody is now looking through the same glasses of people with disabilities: working from home and dealing with a lack of everything. It’s like, we had people with disabilities been doing that since day one, you know? So, yeah.
CHRIS: You know, I think we’ve actually been hearing that a lot. We were on the line with Jane Hash today, who’s a disabled artist and activist here in Detroit. You maybe know Jane.
LEROY: Yeah.
CHRIS: But she made the point that there is this, yeah, this sort of awakening that people have now of how we live. But we talked a lot with her about so, what does that mean? Like what can we do after that sorta moment, right? If we use this as a learning moment, or we hope to use it as a learning moment, do you have optimism that there can be some new knowledge about our community for people?
LEROY: I think with our community, yes, I think the mainstream society, unfortunately, you know, we can see from our dumb-dumb in the White House, you know, he’s pushing everybody to go back as usual. I keep on posting on Facebook. It’s like, there’s no going back, you know? From this point on, everything’s gonna be different. Although, some people won’t act like it, but yeah, we can’t go back [chuckles], you know? And we need to really have hard talks and hard decisions on what will happen after all this ‘cause it has to change. If not, we’re gonna be in the same cycle of not being prepared for the next one. And the next one is coming, you know? With all of this environmental destruction, capitalism is eating up our planet, our earth. So, if we can’t learn from that, then it’s yeah— I mean, I look at my niece and nephews, and I’m like, man! I feel for you because whew, it’s gonna be hard, you know.
JILL: So, who do you look to for those conversations? ‘Cause you’re saying if we’re gonna learn from this, we have to have these hard conversations. So, who do you think can have those, and where do they need to be happening?
LEROY: Well, they’re happening. They’ve always been happening. For me, I look at Disability Justice advocates, Patty Berne, Sins Invalid. I also look at POOR Magazine. I mean, POOR Magazine is doing things that’s incredible. I look at other groups of people. I look at disabled people in Africa because Krip Hop is international. So, we just had, last year, we had an African disabled tour in the Bay Area, and a lotta disabled African musicians came here. I learned from them what they do, you know. Yeah, it’s really connecting the dots from, I think one of the things that’s gonna come out is that especially in the disability community, we have to have an international platform or international framework. I think the days of the “I” story needs to become a “we” story, you know? So, I hope that that will continue to happen outside of the UN. [chuckles]
JILL: Yeah. I really, what you said just there is the “I” story needs to become the “we” story, and that the potential is across internationally. And so, what we work on is disability pride, disability pride. And it seems like that’s something for you as well. And disability as an identity. How do you think we go from “I” to “we,” how do you, in a broader sense?
LEROY: Well, I think we have to redefine terms. I think a lot of people who are activists want this big movement, and I think we have to look at it a lot in smaller doses. I look, you know, I look at the Krip Hop chapter in Uganda. They’re kicking butt, you know? They had a protest about housing. It’s a small five disabled musicians that started that. It’s not a bigtime Ford Foundation grant kind of movement. It’s a small movement. So, I look at those type of movements to really energize me. And I think how we can make it a “we” is reaching out to the other— You know, I reached out to them, and I had them on my radio show. So, things like that, that we can do, especially now when we have Zoom and all that stuff. I mean, it’s so easy to do.
CHRIS: Do you think— One of the things that I’m thinking about in the last couple days is how does the global experience of disability get understood? And so, the experience of somebody in Uganda versus somebody in Western Europe versus somebody in the U.S., right? Do you think there’s a through line for all disabled people? In other words, is there a through line that binds it together like a culture, like a community?
LEROY: Yeah. I think, I mean, that’s why Krip Hop just blew up internationally, is that we have, of course, we have the whole common story of being discriminated against. So, that’s the one thing. Another thing is just the struggle of being disabled and also the culture, the arts of being disabled. So, connecting that way. Yeah, but there is a through line or a theme that comes out of it. That’s what I learned the most bringing my activism and my artwork to the international stage, is that we have so much in common. Just like Malcolm X found that out when he went to Africa when he traveled the world. The hard part is connecting it and seeing the connection and making sure that we help each other, you know? How does that look? That can look, like I said, inviting people on your show or doing artwork together on the Internet.
Krip Hop, what we do is that we, through the Internet—and I’m not saying that everybody has Internet. That’s one of the downfalls because a lot of people don’t have Internet—but what we do is that we build up a song by doing one verse, then emailing it to Uganda. You get another verse and email it to Spain. Another verse. So, that’s one way that we build something that’s tangible. And I think song and art is tangible. People think that only activism and only changing policy is tangible. And it’s like, I don’t, you know, I used to believe that in my 20s, but 15, 20 years on, I don’t believe that now.
JILL: Yeah, I really appreciate how, just in that example, you said how you get different voices and perspectives naturally in everything that you’re doing. We live in a very white [chuckles] well, it’s a conservative area where DisArt, where we’re, well, where we’ve been growing out of. And it’s hard for us to get more voices. Drag Syndrome, which we worked with last Fall, if you’re familiar with them. But that got us to think about—
LEROY: Oh, the UK. In the UK?
JILL: Yeah, from the UK. So, we were able to bring in the LGBTQ community and the drag community, but we’re trying to figure out how do you have those conversations across minority experiences. And I’d love to learn from you how you’ve done that. Where do you start?
LEROY: Well, you know, for example, Krip Hop’s first conference that we put on was at UC Berkeley, and it was entitled Diversifying Hip Hop: Krip Hop and Homo Hop. And so, and I mean, it was…it was incredible how much hate email that we got. I mean, we got hate email. People tore down our flyers. I mean, it was off the chain. But the people that came, people that came, people were like, oh my god. This changed my life. And I think also, keeping up with those contacts. Because a conference is only one day. People go home, and it’s like, OK, how do I keep this up? So, since that conference, Krip Hop has wrote articles in Homo Hop magazines, and queer artists invited Krip Hop artists to be on their CDs. So, making sure that that continues to happen. And it’s hard. It’s hard when only a few of you have that full vision, you know? [laughs] Some people that came to Krip Hop that really respected Krip Hop didn’t get the full vision until they were at the conference. So, and realizing that some people won’t get that full vision, and that’s OK. And we just have to move on.
In Krip Hop, I realize that we have musicians that only do music, and we have musicians that are activists that wanna carry out the musician. So, really balancing the two and not saying, OK, you’re not political, so you can’t be in. You know, but also knowing that if we’re at a conference or doing something, that that person needs to hold all the politics, not just the music. So, it’s, yeah, it’s pick and choose sometimes, and sometimes it’s open to everybody.
JILL: It really sounds like you’re very intentional in the work you do, and the work that you’re creating, the art that you’re creating is transformational for people as a result.
LEROY: Yeah. I try to be. I try to be. For example, [laughing] can I share you one story?! One story. Early on in Krip Hop, I can’t believe that he posts this. I was like, what? But Christopher Reeve approach us and wanted to take over Krip Hop. I was like, what?! Like you don’t have the politics or nothing else. But he offered us like a little chump change to take it over, and I was like, no. I said no, you know. So, sometimes you just have to stand on your mission and just say no to people.
CHRIS: What was his motivation for that?
LEROY: [laughing] I don’t know!
CHRIS: [laughs] I don’t understand. That’s crazy.
LEROY: I know! I don’t know. I think at the time, I don’t know. I don’t know. I think at the time, he was looking at— Because he did have a Hip Hop artist working with him at the time.
CHRIS: Mm.
LEROY: So, I guess they just wanted to take it over. You know, they saw the reach of it, I guess. I don’t know. But yeah, it was just weird!
[peaceful electronic music break]
JILL: So, back to the pandemic. How has your life changed and your work changed?
LEROY: Yeah, my life has changed. You know, I’ve been staying inside a lot, a lot. Being an activist, being an organizer, always, well, being always on the go. But because of disability and aging, my on the go has been slowing down. But now, it’s a virus is like, stop. I lost almost $10,000 worth of gigs because everything’s being canceled. So, that has changed me. I’m worried about my family back East in Connecticut because my nieces and nephews are back in Connecticut. So, I’m worried about that. I need to go shopping. I need to go food shopping, but I’m looking at my computer. I was like, OK. I need to go food shopping. Now I have to have gloves and a mask, so it’s not just going outside just to go outside. It’s like, OK, what do I need before I leave?
JILL: Yeah, we were talking with Jane, like Chris had said, and she says if she gets sick, she doesn’t trust the medical system to be able to take care of her. How are you feeling about the medical community?
LEROY: Yeah. I don’t trust the medical. I mean, I could tell you stories about me trying to get a scooter before I got mine, and I was going through my doctor. We were going through Medi-Cal, Medicare or something like that to buy it. [laughs] And they did this whole evaluation of my abilities. Twice. And the state said—check this out—the state said because I had strength in my hands, I don’t need a scooter. [cracking up] It’s like, what?!?! I don’t walk on my hands! So, we did that twice. Twice. And they both said that because I had strength in my hands, I don’t need a scooter. You know, so, that tells you why people with disabilities just don’t get a F about the medical system, you know? I mean, the only reason I have my scooter is that I did a Indiegogo campaign, and I raised the funds to get it.
JILL: Right. And that’s really unfortunate that your experiences in the past are saying you don’t trust— I mean, now, if you were to get sick or any of us get sick, we have to make choices about if we’re gonna go to the hospital or not. What do you think you’d do?
LEROY: Well, if I get sick, I mean, it’s a different kind of sick. If I just got a cold, then I’d be like, OK, it’s a cold. Let me do my remedies here like take a hot bath or do some medicine, a lot of stuff. But if it gets worse, then yeah, then I have to go see somebody, you know? But before it gets to that point, I would go do my own home remedy or Google my symptoms and compare it to people that have the virus. So, if it matches to people that have the virus, then yeah, I would have to go to the hospital. But if it didn’t, I’d be like, OK. I don’t have it. Let me try more of my home stuff that I do when I catch a cold.
CHRIS: Right. So, what are you hearing from the disabled community around you, and how are your friends? And what’s the mood? What’s the mood in California, in Berkeley, I guess is what I’m really, yeah, what I’m interested in too, yeah.
LEROY: Yeah, yeah. People are just, it’s a ghost town outside, you know. It’s weird. It’s a ghost town. People are like us, doing more Internet stuff and Zoom stuff. I’m frightened of my friends like Alice Wong, like other people that are really at risk for this virus. So, I see a lot of people doing online stuff, putting together videos or snatching what’s good news and putting it out there. And I also see stuff that’s cultural stuff, you know. I see a open mic on video. It’s just really cool. People, Hip Hop artists are doing songs about the virus. It’s really cool, so, yeah.
CHRIS: Have you been reading or seeing things— I mean, one of the things we’re talking about with people is what is the reaction to what you’re reading online? And there’s been articles by the community sorta claiming our own voice and our own experience and trying to sort of fight against the, like I said before, that static of other people talking for us. What’s your thoughts about what you’re seeing on Facebook and Twitter and Instagram? Like what’s your interpretation of what people are saying?
LEROY: Yeah, it’s hilarious because I have two feelings. So, first, I’m happy that mainstream media is finally have people with disabilities talk about this situation, you know. Like I go back to Alice Wong. I go back to Stacey Milbern had a big piece. And on the other side is like F you, mainstream media. I mean, we’ve been here since day one, and you’re gonna use this time to get a disability plan to it. It’s like, yeah. So, it’s a mixed emotion.
And really, I really want to slap the government, you know. I mean, the whole thing about this bill that’s coming out to quote-unquote “help us,” it’s really helping the corporations and saying, “Screw you.” It’s just once again, our government is like totally not for people with disabilities. There’s so many questions. If we do accept these, what $1,000 month or something a month, how does that affect our benefits? Especially with Trump in the office because he’s been talking about cutting benefits before this virus. So, I can see him using this to say, OK, we gave you this, and now we’re gonna cut the whole thing. So, yeah, I’m very worried about government…yeah, benefits. And this stimulus plan that just passed and a lot of people with disabilities are gig kinda working, you know. They’re artists. They’re like me, lecturers. And what does a stimulus plan do with gig workers that have disabilities? And how about houseless people that have disabilities? You talk about [laughs], you talk about it’s going off your taxes. It’s like, people who are houseless don’t do taxes. A lotta people don’t do taxes. So, where are you gonna pull our information to get our quote-unquote “amount” of stimulus? So, yeah.
I mean, it’s a Catch 22 because we say stay inside; don’t go to work. But it’s like, OK, I totally believe don’t go outside. But if you’re gonna say that, then you need to say, OK, rent and mortgage is off for a whole year, you know. Because that’s, I mean, people are going back to work because they need to pay the rent. So, if we had a flat national thing to say, OK, rent and mortgage is off for a year, then people could stay in. It’s like, OK, I’m gonna go out just for food.
CHRIS: That sorta brings up—and we’d love to hear your thoughts too on the intersections here—especially the government’s response to the disabled community and the Black community, right? Are you sensing, yeah, are you also sensing distancing and other atrocities in that part of your identity as well? And so, how is that looking? How is that feeling?
LEROY: Yeah, yeah. Totally. I mean, Black businesses are, I think they’re not gonna come back after all this. You talk about Black businesses that have two employees. How are they gonna come back, you know? Houseless people that are gonna be houseless. With the gentrification especially in the Bay Area, most of the houseless people are African-American males. So, how’s that gonna reshape? Yeah. So, being poor, disabled, and Black under this virus is whew, yeah.
I mean, I heard in New Jersey that the police is picking out people if they’re outside and then taking them to prison and jail. It’s like, and they’re doing it in only one neighborhood, and we can guess what neighborhood that it’s in! So, it’s kinda scary because in emergency situations, we see, we saw it in Katrina that the police have so much powers now because it’s a quote-unquote “emergency.” So, that’s scary being a Black disabled man, and the police has extra powers now ‘cause of this? Yeah. And plus, the president? I mean, it’s a double whammy ‘cause in this situation, the presidents give police more powers, and those powers are gonna oppress people in the neighborhood.
JILL: What do you see as an upside, if any, to the experiences that people are having right now?
LEROY: I think an upside is that people are gonna become more, knowing more about their neighbors, you know. And inventing more alternative ways of living, alternative way of communicating. I go back to POOR Magazine. POOR Magazine has always been off the grid and doing, you know, they’ve been building houses for houseless people. They have fed the community every week. They have their own little radio station. So, platforms like that, I think, are gonna be more created because in emergency situations, we have seen time and time again, that the government is not prepared. And I’m not saying that small projects should take over what the government role should be because that’s impossible. But I think more people will realize that OK, we have to know our neighbors. We have to come up with solutions that we can control locally on the ground.
CHRIS: Yeah, we’ve been asking people what you would like people to know about the disabled experience of this pandemic. And that’s sort of a broad question that can be answered many, many different ways. And in some ways, you’ve already answered it, but maybe we can just put it that way: to people listening, what do you want, what do they need to know about our community?
LEROY: Well, they need to know that our community is, of course, diverse. And they need to know to take our answers that we’ve been doing since day one and bring it to the bigger platform. Teleworking is not new. [laughs] People have been doing it since day one, you know. Yeah. I think we need to have other communities take on what we really started. And especially now, because like I said, it’s hard, it’s really hard to say, but I think this is one of many if we don’t change. And that sounds so broken up with this election. It’s like how can people even think, even think about anyone but Bernie, you know? It’s like, because we can’t go back to the way that we’ve been doing things and this system works the way that we’re doing things. And it’s gonna bring on more hardship. So, you know, once again, it’s like really figuring out what people are doing now that’s totally new. Alice Wong, Stacey Milbern, Disability Justice Collective, POOR Magazine, National Black Disability Coalition. And also people internationally, you know? Because I think that’s how we’re gonna totally save our planet, you know?
[mellow electronic music fades in and plays till the end]
CHRIS: Thanks for listening. Be well. Keep your distance. Send us your comments, questions, and your 280-character submissions to hello@DisArtNow.org. And make sure to follow the My Dearest Friends Project on Instagram, Facebook, and at DisArtNow.org. Thanks again to the Ford Foundation for their support of this work.