Interview Date | May 22, 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 necessities flexibility and creativity and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.
[peaceful music slowly fades into a folk tune on violin that plays until Gaelynn introduces herself]
JILL: The trajectory of your career has been incredible.
CHRIS: It’s awesome.
GAELYNN: It’s been a really weird decade in a good way. Just like all the places before the quarantine that we got to see was very cool. And you never know the future, obviously. So, it was good that we got it all in. We went really hardcore for four years. It seems like arts is gonna keep moving online. Even for me, I’m not gonna wanna tour for a while, obviously.
CHRIS: Yeah.
GAELYNN: But I kinda feel like there’s still ways that I’ll be able to do stuff online. ‘Cause there’s a lot of online content that doesn’t require you to go to a bar necessarily, you know what I mean. So, that’s the goal anyways.
My name is Gaelynn Lee, and I am a violinist and a songwriter and disability advocate and a public speaker. So, I have a lot of different hats that I wear. COVID came right as my husband and I were like halfway to a tour to Colorado. And it was the weirdest few days. It was only like a four-day stretch in the end because we ended up turning around and coming home. But the first day, we were armed with disinfectants and masks and hand sanitizers. And we’re in the van, and we’re like, let’s do this. And then the next day, we’re in southern Minnesota, and we start talking to venues about maybe we’ll do shows like on Facebook Live, and then the audience can be really spaced apart. And if people don’t feel comfortable coming, then maybe they can just watch it from home, and they can purchase a ticket online that way.
And then the third day, Trump’s travel ban happens. And we’re getting into the hotel, and we’re disinfecting everything. And we’re eating in our room because we’re not comfortable going into a restaurant by that point. And then the next morning, I woke up, and I was like, I just have a really bad feeling about this because I don’t wanna make people, especially people with disabilities or immunocompromised people, I don’t wanna make anyone sick at my show. I just don’t want to not know what’s gonna happen to the people who come see me. So, I called my friend who’s a doctor, and she’s treating COVID patients. And luckily, she answered, and I was like, “Um…should I cancel my tour?” And she’s like, “Yes. Yes, you should.” She’s like, “Do it today so that nobody has to debate whether or not to come,” ‘cause the first show was actually gonna be later that night.
And we canceled the whole tour. And it was really weird. And then we got back home as soon as we could, and we bought groceries in the store, which I would never do now. It’s just so funny how the world shrunk down. And so, as a performing artist, I mean, I’ve been journaling every few days, and it’s been interesting to read. You know, I wrote, “OK, we were on tour, and we decided to come home for a couple weeks.” And then it’s like, “OK, well, a couple weeks looks like it might be like a month.” And then it’s like, “Actually, I wonder if I’ll be out before 2022! I have no idea.” And so, shifting gears has become a more permanent thing now for me. So, I’m doing a live show on YouTube every Sunday afternoon. The first one I did, I was very clear that we need to get some income because we lost money, obviously, going out. You know, we drove for four days and made no money, so all those expenses just weren’t recovered. So, I said, you know, we could really use your support and come to this online show.
And so, the first weekend was a pretty profitable weekend, actually. And I did a show where a couple hundred people were there, and it was cool because NPR Music included me on the list among like Ben Folds and stuff. And I was like, sweet! This is really scary, but cool. So, that was a good, good weekend. And then I’ve been doing them every weekend since. And it is a changing landscape in that the audience size is smaller now. And a lot of the people who donate, donate like $5. So, the income source is not gonna be coming from live shows as much as one would hope, I think, although it still does come. But the thing that’s been heartening as a musician and a public speaker—because really my career has two pretty distinct parts—is that everybody is transitioning their conferences online and stuff. And so, I’m still doing speaking engagements. They’re just all on Zoom. And so, I’m making it work in the age of—
Sorry. There’s a dog barking. I don’t know how much you can hear of that. [high-pitched yipping in the distance] Might wait till that dog goes away. Can you hear it? OK, yeah. I was like, there’s a really loud—
CHRIS: Yeah, but it’s really OK.
GAELYNN: Anyways. So, just kind of like thinking about the future. I think I wanna do my own live shows, and I’ve been trying to say yes to other people’s festivals. I’m doing a festival in England in the beginning of June, and that’s actually kinda cool. So, as a creative person, there is this like mourning of not touring and not having this live interaction. But there is also something really cool about doing a festival in England from my living room and still connecting with all those people. I think it would be very hard to be a starting out artist right now, but because I had been doing it for four years already, a lot of the people that we know in real life have become these people who are hosting virtual events. And then that’s what I do.
And then the other piece of it is, I’ve been dealing with a lot, like the first month, I would say all of April, I was pretty depressed. I had depression. I mean, I have depression, and I usually manage it pretty well. But it kinda got out of control in April. And so, I really struggled to get anything done besides the stuff that was like, I’m on a show, so I have to be there. And so, the creativity part was really, really down for me. Thinking about creating just felt monumentally difficult. And I’m starting to feel more inspired to create now. But there is this interesting thing when you’re an artist where people are like, “Aw! Are you gonna use this time to write a lot of new songs?!” I don’t know when I’m going to create again, because right now, I’m struggling with emotional and mental health issues, you know? So, that was an interesting month, kind of difficult. But luckily, I have a counselor. And so, I started going to her again, virtually, of course. So, that was the first month.
And now this month, I still feel kind of discombobulated, but I think what it is, is that I am a pretty active person. And I think I didn’t realize how much I…I think I expect a lot of production out of myself. [chuckles] And so, in this new reality where things are kinda weird and your schedule is very amorphous, I mean, it’s crazy. Now, it’ll be like a week already went by? What are we talking about? Like, it feels like five seconds. Time is just weird. And so, I think I’m not as productive as I have been in the past. And it’s a weird, I’m struggling a lot with judging myself for that, not being as productive as I want to be. But I’m trying to learn to— Somebody said something that really helped me recently, which was that, about 100 years ago or 150 years ago, basically, the point of living was just to survive. And you survived, and then that was the point. And so, I am trying to be like, OK, so I’m here. I’m surviving. I’m making enough income to live. And I’m trying to enjoy each day and kind of reframing what I think an OK amount of things to do is.
And I truly do believe that people don’t have to be productive to be valuable, but I know that I do that to myself. That’s something I struggle with personally is feeling that I don’t actually think it’s healthy or right, because I think every single person has value whether or not they produce anything in their whole life. That’s a real belief of mine, but it is something I struggle with personally, is holding myself to this standard of always accomplishing stuff. And that’s so frustrating. I guess I didn’t realize how anchoring that was until now.
[folk music break]
So, the one thing I did have to do was upgrade some of my equipment. My first livestream show, I sounded like I was in a tin can on the bottom of the ocean, and I looked like I was from like 1994, basically. The quality was very low. And so, I’ve been gradually upgrading equipment, not to anything super fancy. I still have a Chromebook, but I have a nicer Chromebook and a webcam and a web microphone and all those things. And then I ended up getting some recording software, which I am just now starting to feel like, OK, I wanna start tackling some of the things that I’ve been picturing for a while. I mean, I’m so grateful that this pandemic is happening in a time where this stuff is all possible from home. I mean, there’s no way I could even think about releasing an album if it’s something that I couldn’t make at home right now.
But every show I do on Sundays, I’ve been doing a little bit of instrumental improvisation, which is something I really enjoy, but I didn’t do a lot at live shows because I was worried that it’d be boring for the audience. But I did it one week under the guise of meditation music. ‘Cause I was like, “If you wanna sit and meditate and listen to this music, and it’ll be comforting.” And then but people are like, no, you should keep doing this. It’s fun to hear. So, I’ve been doing it every week, and I think I’m gonna make an album kind of based on these concepts of improvisational instrumental, just kind of putting on and listening. ‘Cause I think relaxing is an important part of COVID, [chuckles] trying to unwind a little bit and turn off a little. So, I think that’s the next thing I’m gonna do. And I’m grateful that we can do it from home. It’s like even 10 years ago, this would’ve been a very difficult career change. I can’t actually foresee how I would’ve successfully navigated any kind of online transition 10 years ago, where now it’s like, oh, OK. This is actually something I can do. And it’s a nice challenge.
And ironically, we’ve been gone for four years. I mean, we were not home very much at all. And I had been saying I would like to be home more often. I don’t think I meant like 24 hours a day forever! But I mean, I am appreciating being at home and connecting with people online. And my parents will walk by our deck. We don’t let them in, and I don’t hang out over there. But sometimes they walk by and talk on the deck with their face masks on. And so, it’s nice to be in Duluth, I guess. Yeah, it’s such a weird time.
[folk music break]
CHRIS: Accessibility in performance has always been something that you’ve cared a lot about.
GAELYNN: Yeah.
CHRIS: And it’s been wonderful, I think, for me to watch so many people be able to have access to your art during COVID, especially disabled people. And so, I think one of the things that I would love to hear you talk a little bit about is that process of bringing accessibility, coming to the club where the stairs are and you can’t get in, and then talking a little bit about your policies about that. Just to let people know about that heritage in your work and how that really is feeding into what you’re doing today too, it seems like.
GAELYNN: Yeah. I’ve set some boundaries about accessibility for live performance for me that I’m glad that I have done, and I wish more artists would do the same thing. ‘Cause I think it needs to be more of a movement than it is right now. The one thing I don’t do yet, because I honestly don’t know how to afford it yet, is have ASL interpretation at every show. I really would like that and captioning. If I could have both that every show, that would be great. And I haven’t figured it out yet in terms of cost. I mean, I hate that venues so often use cost. But when you’re a single artist with shows that are like 50 people, I mean, my shows aren’t huge, that literally, ASL interpretation would cost what I make and sometimes more. So, I don’t know how to do that yet, but I’m kinda hoping COVID will give me some time to figure out. There’s a live captioning company that I contacted. And then again, I’m kinda scattered right now and not maybe at my late peak go-get-’em-ness. But there is a company that said they were excited that I wanna do that at shows, and they could maybe work with me on pricing. And so, someday I might be able to incorporate that.
But my journey with accessibility in performance is kinda went like this. Is like I started touring, and I put on my stage plot—which is the little piece of paper that explains your setup that you send to a venue ahead of time—I would put on my stage plot in bright red letters across the top, “Gaelynn Lea uses an electric wheelchair, and she needs a ramp to the stage. Please contact us if this is an issue.” And so often, I mean 80, 90% of the time, it just wouldn’t happen. And they would lift my chair up onto the stage with me either in or out of it, depending on how tall the stage was. And then they would say things like, “Oh, we really should get a ramp, or “next time we’ll have a ramp.” And then I would go back, and there wouldn’t be a ramp. And they would say, “Oh, yeah. I mean, we figured we lifted you up last time, we’ll just do that again.”
And I think the last straw was just I did a show in the Boston area at a really well-respected folk venue that’s been around forever, and it’s super inaccessible. It’s in the basement of this space. And I almost didn’t do the show, but it was such a good venue that I was like, well, I shouldn’t turn it down ‘cause it’s a good thing for my career. And then but I felt like crap the whole time. Like this guy who is a GoFundMe supporter who’s really nice, he came to the show, and we were gonna have dinner before. But had to help carry my wheelchair down this whole flight of stairs, I mean, not just like one stair, and then up onto the stage, and it’s really hard, and then getting back up. And I was like, first of all, if people hurt themselves, that’s not okay. My wheelchair’s definitely at risk of getting destroyed. And then I was gonna feel so crappy if somebody in a wheelchair came and wanted to come, ‘cause I’m not gonna expect them to do what we had just done. And I wouldn’t even want them to ‘cause it’s dangerous. And so, that was sort of like, OK, I have to stop playing venues that aren’t accessible. This is not cool.
And so, you hear different arguments even among disabled people. And I really try to not judge where other people are coming from. But even from disabled people, you hear like, well, it’s better that they see the performance rather than not be able to see it and they don’t get to walk away thinking about it. But I kind of realized for myself that that argument didn’t hold enough water because venues were seeing the solution as just continue to do what you’ve always done. And the change that I wanted to see wasn’t happening. And from repeated experience, you know, it just wasn’t happening. And so, I decided I wouldn’t play at venues where people couldn’t get in the door, couldn’t use the bathroom, or couldn’t get into the same room as the stage. And those were my three criteria, which I know there could be more. So, there’s definitely room to grow, obviously, but that was like baseline: I don’t want people to be able to not get in or not be able to use the bathroom the whole time they’re there. Because I think that’s not cool.
And then if they don’t have a ramp to the stage, then I will play on the floor. Some venues really are with tall stages. I mean, there’s this one really sweet venue, really nice guy in Georgia. He rented a ramp for his stage. It costs him like $1,000. I know he lost money on that show because it had to be like 43 feet long with the ADA. And I like the ADA. I wish there was a little more flexibility for businesses, a little bit. But I understand why there’s not, and it’s just the reality we live in. But I’m not gonna necessarily tell a venue like that that they have to get a 43-foot ramp for my show and then just straight up lose money, ‘cause that’s just not good. So, I’ll play on the floor if they don’t have a ramp. And that was sort of my personal compromise.
I have seen some really cool changes because of that. I mean, there are definitely places that I just can’t play. And that’s the thing where I wish more artists, disabled and able-bodied, would just make the same rules for themselves, because if it wasn’t just like one artist every four years who says, “Sorry, I can’t play at your venue,” the change isn’t gonna happen until it’s a critical mass, probably, for those older venues that are [chuckling] basically breaking the law for the last 30 years. Those venues don’t care unless there’s a reason to care. And the reason for them would be like nobody will play at my venue because it’s not accessible. And then I think they would change. Until that happens, I don’t know. I don’t know. But not all hope is lost. So, there are definitely places I can’t play, but there are also venues that have hand built ramps ahead of time. And I send them measurements. I have all this stuff written out, like here’s a YouTube video about how to build them. Here’s a website that sells them for pretty cheap. Here’s a place that will rent you a stage lift that’s hand-cranked so it’s not even electric. Here’s all the resources, and whichever one you wanna do is fine with me.
So, there’s this ones I knew that did a fundraiser two months before I came. Didn’t tell me about it. Raised enough money to buy an electric stage lift, and then installed it about a week before I got there. And he called me and I almost cried. It was so cool, because that’s the kinda change. I understand. I do. You know, I think probably disabled people understand, I would hope, the idea that some things are a compromise. I understand some venues don’t have money to necessarily invest in a huge project up front, but they definitely can fundraise for it. I’ve actually looked into the legal aspects. You can definitely fundraise to make modifications on your building. There’s nothing like making that illegal. And so, I understand that the way business runs, it’s not like always a huge profit margin, and a lot of these venues are on a very tiny budget. But there’s nothing saying they couldn’t prioritize it in a different way by raising funds in their community to become up to code. And so, that’s the kinda stuff that I really wanna see on a bigger scale. But I have. There’s a lot of venues that’ve built ramps, and just we’ve had a lot of good conversations about it.
And what was cool about him is he said, “You know, now anyone can play here. I have an open mic. Now anybody can come.” And like this one older guy, he uses a walker, and he always gets up to the stage. And it’s always really scary that he might fall. And now he can use this when he does open mic. And it’s like it’s true. Definitely more than just me using it, obviously, right? But I think venues sometimes don’t think like that. And so, that was why it was really powerful that that guy actually totally got it. And so, I’d like to think that the telling the good stories in addition to the rough ones—
I mean, a lot of my green rooms are in like mop closets and stuff, which is not cool. [laughs] I don’t know. I think I personally feel like for myself, I would rather be a force of positivity in general. I mean, not like positive. I have very firm boundaries. I don’t even, I don’t break those boundaries anymore, right? But I try to be as respectful as possible with the venues, because I want them to want to change. So, I try not to just say like, “Man, this venue sucks” ‘cause I played in a mop closet. But I do think people need to know that the reality of a disabled performer, like people complain, oh, there wasn’t any beer in the green room. And I’m like, hey, my greenroom was by a mop. The equality is not actually there yet. And so it is important to talk about it because I think a lotta people just don’t know. Especially things like green rooms and backstage access and the bathrooms and things that you don’t think about and see as visibly. Like the stage, I think, some people get that more instinctively, but things like green rooms. I just really wanna see other artists take on this cause. And I think maybe eventually some of them will. I mean, you know. I know there are other disabled artists that have, but I think it would be a good thing for mainstream society to just start kind of taking some action.
So, one last thing before I end this rant portion is that there is a guy named Martin Atkins, and he is the founder of a Chicago-based industrial rap group, Pigface. And they are a supergroup, kinda like they have all these different people coming and going all the time. But they had a core group of members from the early ‘90s. And I was asked to do a reunion show with them not long after I won the Tiny Desk in October of 2016 or November, actually. I played with them, and then a few years later, he asked me to come on a tour. They were doing a reunion tour. You know, I said, blah blah blah, accessibility. Here’s my guidelines. Here’s all the information the tour manager will need to communicate with the venues. And they took it all. And I don’t think they realized how hard it is to get this stuff in place. And so, I ended up having to back out of a few of the shows that I was slotted to open for, because they just wasn’t accessible. And they weren’t gonna be able to do anything. And I felt really bad. But luckily, he understood ‘cause, I mean, I would never have booked at those venues. But trying to get them to comply later can be impossible, basically. So, I didn’t end up doing some of the shows.
One of the shows there was a venue that didn’t have accessible bathrooms, and she said she was grandfathered in. And we had this huge email conversation back and forth about how that’s not real and talking about options of fundraising and just having this very lengthy exchange. And she ended up being a really cool lady. So, that could’ve gone down pretty bad because it started a little adversarial. But we were able to kinda steer it in the direction of like, OK. Well, what’s the future of this venue look like? But what I ended up doing there is booking my own opening act at a health and wellness center down the block. And half the audience just walked to my set and then walked back to the other set. And it was actually a really magical night. So, I think being flexible and creative with it can actually be pretty cool.
But the best part of all of that is that later, now, this Martin Atkins guy, he is a public speaker. He does music conferences. He’s a music educator. He cares about accessibility now. He donated a couple hundred dollars to the National Disability Rights Network when I was talking to him about treatment rationing possibilities and how that was a legal battle that’s currently affecting people with disabilities in the COVID-19 pandemic. And he actually cares. And so, then he did a conference, and I had mentioned, if you can, it would be cool to have ASL interpreters for this event on Zoom. And he did it. I mean, he got ASL interpreters. He said, “I brought it forward to my students, and we kinda read about it. And we felt like it was our responsibility to do it.” And so, they did it. But a change can happen over a long period of time, too. I mean, this is like a few years in the making. But he was really pumped to have interpreters. And I know that at least a few people there were actually Deaf ‘cause we advertised like ASL will be available. And it was just cool ‘cause he has no direct connection to the Disability community. But now he does. So, I think if people are willing to go the long game, the long-term plan, that change is gonna happen even with allies and stuff, I think it’s a cool place to be in this time of history. I mean, it’s still frustrating and very scary. And I don’t think our rights are super secure right now. But there is some positive change happening, and I think it’s fun to be in this cultural point because there is such a potential for change, I guess. That’s my rant.
JILL: Love it. Interestingly, LaughFest, which happens in Grand Rapids, comedian festival, happens every March. The first year that we worked with them and brought in a disabled comedian, there happened to be one venue out of all the venues around the city that didn’t have an elevator to get up to the top floor where the comedian was performing. And from that moment on, for every festival on, every time they put on the festival, the places have to be accessible.
GAELYNN: That’s so cool.
JILL: It was them as a festival saying, this is what we value.
GAELYNN: Mmhmm.
JILL: We value our audience being able to get to our venues. We value any artists who need to get to the venues to be able to access it. And I would love to see not just yourself, but it sounds like Martin and maybe other festival directors or other larger entities taking this on and saying, “We will not use your venue if it doesn’t meet these expectations.”
GAELYNN: Yeah. I would really like especially South by Southwest to take that stance. They’re throughout the whole city of Austin. I’ve done it twice now. And the last time, they booked me at a venue that really wasn’t accessible. There wasn’t enough room to put a ramp to the stage. And then there wasn’t even enough room in front of the stage to even just be on the floor. And then there was no room for people in wheelchairs. So, then I just said, “Well, there’s a coffee shop attached to this building. Can I just do my show in the coffee shop?” And he’s like, “If you can get permission, yeah, for sure.” So, I did do my show in the coffee shop, and they brought the equipment in and stuff. But afterwards, we had a follow-up meeting like, you know, if you’re charging like [laughs] $800 for a pass, and a person with a disability can only get to like 70% or 30% or whatever it is that year of the shows, that seems pretty crappy. And why can’t we just talk about not doing shows at venues that aren’t accessible?
I don’t think they’ve made that commitment yet. I know they’re slower, and they’re a huge beast, but I hope that eventually they do. We’ve definitely had a really direct conversation about it, but I don’t know what it’ll take. I mean, sometimes it takes lawsuits. A lot of these wheelchair accessible festivals that you see are accessible now because of lawsuits. And it’s not always that way, though. So, that’s cool about the comedy one. That was not a lawsuit, right? That was just like them taking it on? I prefer that method, obviously. And so, I think that that’s really cool to hear that they did that. Then that kind of sends a message to the whole community that this is what we value. It’s not just a temporary stage. It’s like the places people go all the time.
JILL: Yeah.
[folk music break]
JILL: Our rights aren’t super secure right now. What do you mean by that?
GAELYNN: Well! [laughs] There’s a lot going on in that statement! Well, the first most pressing thing, I guess, is just when you start reading about pandemics and start hearing about the hospital policies that essentially would put someone with a disability in the back of the line for a ventilator. That was really like, what? OK. What? So, the more you read about it, the more you realize it’s not like hyperbole. That’s legitimately what a lot of those policies would do. One of the things I did in April, even though I didn’t do a super lot, was I did write emails to both senators and the Office of Civil Rights and my governor and expressed concern. And I know a lotta other people did that, too. And so, at least at this point, the Office of Civil Rights has said you can’t discriminate. But I’m sure, I mean, that’s like there’s watchdog. So, whenever I do any speaking now, I always bring that up: is like if you hear about this in your state, you have to say something. I mean, whether or not you have a disability, this is really a serious issue. Valuing a human life based on how quote-unquote “healthy” it is or judging how quality of life.
I think it’s really frustrating to me that we’re talking about things like quality of life still. [laughs] Because I like my life! I don’t know. I just don’t, I don’t understand how anyone in a third party can determine what somebody’s quality of life is. It has to be a personal decision. It doesn’t mean that every single person with a disability or not a disability would even want a ventilator. But just the idea that your perceived quality of life is the reason you can’t get one is really stupid, and it just makes me really mad. So, that’s the first thing is that like, not only are we…. I mean, that that’s just like a inherent under-the-surface at all times thing happening in your psychology is like, would I even make it out of the hospital? I have no idea.
I had some personal experience with this. When I was 21, I had respiratory failure. They don’t really know why. It might’ve been mold that I inhaled when camping. It could’ve been because I was an idiot and smoking cigarettes for a month or so, and that was not a good idea. I didn’t realize at the time that my lungs are about a third of the size of a regular-sized person’s lungs because of my chest cavity. Not my actual lungs, but the amount of space I have for them to expand is very small. And it could’ve also been that I had some undiagnosed asthma ‘cause I do have some of that. So, they weren’t really sure what caused it, but I went in the hospital. I was unconscious at the time or whatever. The doctor came in. He looked at me, I guess, like this, like kinda surprised. And then he just said to my mom and dad, “Wow, she’s so small, there’s nothing I’m gonna be able to do. You should say your goodbyes.” And that’s like what he said. They deny saying that, but my parents both heard him say that. So, I know I do not doubt that that actually happened. My dad was like, “Oh, no. I wasn’t expecting this.” And my mom’s like, “She has a bone disorder! This is not how it’s going to end!” And she’s like, “I am going to get a second opinion,” so she did.
She got a second opinion. And that doctor’s like, “Well, you know, if it was any patient with these symptoms, the first thing I would do is prescribe prednisone. But he’s already done that, right?” And she’s like, “No, he’s done nothing.” The doctor said, “I will come over there,” ‘cause it was back when the doctors could kinda bounce between hospitals. “I will come and prescribe prednisone.” And so, he did, and I was better 24 hours later. Like, I didn’t need any more interventions. And so, the thing is, is I know that even in a non-pandemic, ableism is super alive and well in the medical field especially. I just don’t even wanna know what would happen if I got COVID. It would not be good, I’m pretty sure. I mean, maybe I could get lucky. But it’s just the way that it’s set up in the medical field now, it does not valued disabled—
I mean, I’ve gotten one chance, which was really powerful, to speak to a group of doctors about this. And you could tell they had not thought of it that way before, that disability is diversity and that people with disabilities, even if they have like a traumatic accident that leaves them disabled, yeah, their quality of life, they rate it crappy for about a year. But then after that, it goes back to wherever it was before. So, if you were miserable before, you’re gonna be miserable. If you were happy before, you’ll be happy again. And that is because disability is independent of your life’s happiness. I mean, generally, statistically, if a doctor wanted to look at it, they couldn’t make a good argument for why a disabled life is less valuable to save. There’s, that just makes me really upset.
So, anyways, I already had that experience coming into this COVID thing, so I was like, holy crap. So, that was the first, like, wow, disability rights: where are we gonna go with this, and how far have we really come if these conversations happen the second there’s a crisis, right? And then it seems like, OK, well, the Office of Civil Rights is at least making a statement, which is important, that sets a precedent that discrimination’s not OK, which I’m grateful for. Unless that changed in the last week. I haven’t read the news lately. But I’m pretty sure, I mean, at this point, they’ve said it a couple different times where it’s like, you can’t discriminate. You can’t discriminate. So, but then you start thinking about what else is going on.
So, I’m not the only disabled person who does not want to get COVID. I mean, nobody wants to get COVID, right? But I’m pretty sure it would end very badly for me. So, I really do not want to get COVID. So, I am taking it really seriously. I’m not going out. We’re going out in our yard. We’re not even going on walks in neighborhoods anymore because we kept getting stopped and having to talk to people. And we’re wearing masks, but not everybody else is. Most people aren’t, unfortunately, where I live because it’s not like a huge city. So, people, I think it’s sort of like high blood pressure where they’re like, well, it’s here, but I don’t see it. So, I’m not gonna worry about it, you know what I mean. And it’s like so, there’s not enough masks to make me feel actually safe about going out. So, we’re staying really, really, really close to home, and we’re getting our groceries delivered. And we’re like just not doing stuff.
[gentle folks music begins with Gaelynn singing]
♪ Pushing up, pushing up
Through the dirt just like a seed
But you’re never quite a flower
You feel more just like a weed
Driving through, driving through
You want to know where you are going
But the windshield’s always dirty
And you never get to see
What makes you think that you’ll ever get there?
What makes you think you deserve to know?
Who are you really, are you so important?
Take a look around and watch the world unfold
Watch the world unfold
Watch the world unfold, watch the world unfold ♪ [music very slowly fades away]
The thing that it kinda started dawning on me more recently is that I think society is assuming that disabled people and older people will just take the whole burden on themselves. Like just, they’ll stay home till 2022 while we all resume our normal life. And, yes, that is what I will do, obviously, if I have to. But there is this other option of considering it patriotic to wear a mask because we value all, like all people are created equal, and we all have the right to life, liberty, and the pursuit of happiness. So, if everybody just wore the masks so that it didn’t spread as much, I can honor your liberty by saying, yes, I know you have to go back to work. And the government can’t tell you to stay home for two years. I understand that. Again, it’s all about compromise. I think realistically, as much as I would be happy to hear our governor say no one’s going out until October till we have a vaccine, whatever it is, that’s not realistically gonna happen, right? But what could realistically happen is people could take it seriously on behalf of the citizens that need them to. So, like everybody wears a mask outside, and everybody actually stays six feet apart. Because then you’re taking a minimal amount of burden on, everybody is, rather than the minority having to take on all of the burden of staying home. And so, that’s I guess what I mean by disability rights is, it’s like, I don’t know if you can call that disability rights or what. But like the idea that our liberty is already—
I mean, to get paratransit in my city where I live, you have to call a week in advance. Your liberty is already squished a little bit, right? So, most people don’t have to think about a week in advance how they’re gonna get a cup of coffee and at what exact time will they want to leave that cup of coffee. But it’s where we are right now, right? It’s definitely better than it was 200 years ago. It could definitely be better. That’s just where we are. But to add on top of that the idea that everybody else will just resume normal life, and the burden of protecting yourself just falls on you and the people caring for you, I think that that is a little bit discriminatory kind of. I don’t have a better word for it. But if we actually believe everyone has life, liberty, pursuit of happiness, those are rights, then how are we protecting disabled people’s rights to liberty? Not just staying alive, but how can we help everybody get out of their house faster?
And I think from what I’ve read, and unfortunately, this is another thing that’s kind of frustrating is right now, the World Health Organization basically says only wear a mask if you’re sick, which boggles my mind because 25% of people don’t even know they have it. So, why isn’t a reputable organization like the World Health Organization just telling people to wear one? What does it hurt? You know, not everyone can physically wear one. I understand that. Some people with autism can’t handle it on their face, and I get that. But the vast majority of people could just be taking one for the team and wearing a mask outside. And it frustrates me that that’s not happening. ‘Cause maybe it is in some cities, but where I live in Duluth and the guidance from official people like our governor don’t say that. They say wear it if you’re sick and if you’re gonna be in crowded spaces. But you don’t always know where you’re gonna be. I just wish there was more clarity for people. So, I can’t even really be mad at people who aren’t wearing their mask outside right now because the higher up authorities are not actually saying that they need to. It’s just that as a disabled person, the writing is on the wall about how long this is gonna go on and what this means for my freedom. It’s just not looking great.
And there’s so many other issues. This is just me whining, like can’t go outside. There’s a lot even more. But I don’t wanna speak to disability issues that are not personally affecting me. But those are the ways right now that COVID is personally affecting me. I know that a lotta people are having trouble getting their PCAs to come or getting protective equipment for their PCAs. There’s a lot of issues going on all at once. And so, I don’t wanna make it all about that. But for me, that’s what I, I’ve just been going on, like, what direction is America heading if we are essentially saying isolate, isolate, isolate? How different is that than institutionalization? I don’t know, you know? It just makes you kinda wonder where we are heading with this stuff and how to stop it. I think I am gonna write a blog post this week about masks as patriotism, because I really believe that.
CHRIS: Myself, I wouldn’t place it on patriotism. I would place it on that idea of sharing the weight of.
GAELYNN: Yeah.
CHRIS: You know what I mean? Because I think that that’s a really significant part of what you said, you know. It’s certainly discriminatory to ask disabled and older people to bear the weight of staying home. But I think what’s more important about that request is the assumptions it makes about the lack of involvement disabled people have in cultural life.
GAELYNN: Mmhmm.
CHRIS: And that’s what’s been so, so very difficult, I think, for a lot of disabled people during this time. And we’re hearing it over and over again in the interviews that we’re doing too, that people just want to be known as a viable contributor to reality and meaning and life and beauty and whatever, right? But patriotic, if we’re in the safe space. [chuckles] Are we in the safe tree? Can we talk?
GAELYNN: Yeah. [laughs] Yes!
CHRIS: I think linking any sort of patriotism to anything right now is really, really complicated because of the current administration.
GAELYNN: Yeah.
CHRIS: So, I think it’s almost like a human call.
GAELYNN: That’s true.
CHRIS: It’s a human call. I don’t know. That’s just my thought. What about you, Jill?
JILL: Yeah. I mean, I liked what you were saying about spreading the responsibility and that we’re in community with each other.
GAELYNN: Mmhmm.
JILL: And that when you’re in community with each other, you do what you have to, to live together.
GAELYNN: I’m thinking boiling it down to like, if you really wanna think what the essence of America could be, that ideally, it’s like we value every person as equal and that everyone should have the right to life, liberty, and the pursuit of happiness. That’s what I mean by patriotic.
JILL: I think that’s true.
CHRIS: Absolutely.
JILL: I think that’s 100% true.
GAELYNN: I’ll have to look for maybe a different word than “patriotism,” but I do want it to be clear that this is a uniting thing. It almost hurts when people use this phrase, “We’re all in this together” right now ‘cause it’s like, I do not sense that in the way that I wish that I did. You know what I mean? And I don’t wanna focus on the negative more than is necessary because I think I don’t wanna walk out of this hating half of my fellow citizens! And I don’t wanna become that way or emerge from this so jaded. So, I was thinking, how can we discuss this idea of wearing masks in a way that’s pretty universal, that even a conservative person would have to think about whether or not that was true. And maybe it wouldn’t change their mind. But I’m not trying to teach to the choir right now. I’m trying to think like, how could you word this discussion in a way that might actually reach a conservative person? And I don’t know the answer.
If we actually believe in what we think America is— I mean, it does feel like a phantom of its former self right now. You know, America’s, I mean, I’ve been listening to the queen more than I’ve been listening to our president. So, that’s what does that say? So, but I think that the idea of the Constitution is a cool document, and that’s why I think you can’t, unfortunately for me, right, make everyone stay home for a year because you have the right to assemble. And I think that, again, America and democracy in general is sort of this give and take between views where we can come to a place where everyone can live with as much freedom as possible, right, and liberty and dignity and all the things that we want as possible. And so, you’re not unnecessarily hampering any one group. I mean, that’s how I see it. I’m not a scholar, but it makes sense to me that not everyone’s gonna get everything they want all the time. But why are we putting all the burden on disabled people? ‘Cause it does feel that way when there is a solution that’s not that burdensome for everyone else. It’s like mowing your lawn. People to things to live in a community that they maybe wouldn’t do if they didn’t live in a community. But since we do.
JILL: Yeah, when you have mandates that you have to wear a mask in a store, it normalizes it.
GAELYNN: Yeah.
JILL: Because we can choose in other parts of public spaces to wear one or not, it leaves it to well, this is really uncomfortable for me. I don’t wanna be the only one wearing a mask. What you’re suggesting is a call to more people—
GAELYNN: To wear it out of compassion for the others.
JILL: Exactly. You’re talking about empathy.
GAELYNN: Mindfully wearing it on purpose, even if you don’t have to, as a badge of honor, kind of like, you know? Is there a way to make it like, oh, you’re wearing one? Kudos to you. Like, good job. Instead of like, oh, you must be a worrywart, or you must be one of those people that’s compromised, right?
CHRIS: Yeah.
GAELYNN: It should be more like how can we honor everybody in America by doing that?
[folk music break]
GAELYNN: I don’t like, on either side, the way dialogue goes down right now. And I think the more I read, I mean, I’ve been doing a lotta spiritual reading and stuff myself this last year and especially since COVID. And I really think the idea of unity has to actually, that is something that we really need to get back to. Not unity politically-wise, but the fact that we all do affect each other and that if everyone has value, then we have to live that way. Instead of this like blame, blame, blame, hate, hate, hate. This person did this, and this is bad and bad, bad, bad, bad, bad. How could that possibly lead to a road that creates a more equitable future? It just doesn’t. I mean, I don’t see that negative dialogue does that. I mean, maybe it can. Negative isn’t a loaded word, but I’m talking like you watch what Martin Luther King did, Martin Luther King Jr. Of course, he expressed anger or injustice. But he wasn’t out there name calling people. And I feel we have really gone down a dark path of civil discourse. And the only way to get back to it is just to refuse to participate in it anymore. [chuckles] And so, I don’t know how to talk about masks in a way that’s not just like blaming the people that don’t wear them. But I do want to write something about it because I think the burden of the disabled people is really gonna be big, and it’s not gonna go away for a long time. And then once you normalize that, what else can you normalize in the name of like, oh, this is their issue. They have to be dealing with it, you know?
CHRIS: Mmhmm. Well, I’m wondering about the concept of choice and that choice, above anything in U.S. culture, right, is heralded as the most important thing, right?
GAELYNN: Yeah.
CHRIS: Because of capitalism.
GAELYNN: Freedom, right? Freedom?
CHRIS: Freedom and choice.
GAELYNN: Yep.
CHRIS: So, capitalism brings on this idea, if we don’t have seven types of cereal to buy, right, we don’t feel, right?
GAELYNN: Good point. Yeah.
CHRIS: But there’s a way to tap into our honoring of choice in the way that we valorize choice, you know, and then bring it in to the mask thing. That if we had this choice, we had this love for choice and selection, yeah. But choice is something that—
GAELYNN: Like you should give people the choice to go out eventually by wearing a mask? Is that what you mean? Like honoring disabled people’s choice?
CHRIS: Yeah. I’m just, I mean, really what I’m trying to do is understand why people are so freaked out about the masks. And it’s because it feels like a choice is being taken from them, right? My choice to go outside and walk around is being threatened by you saying I gotta wear a mask, you know?
GAELYNN: Yeah.
JILL: I’m just curious. It’s the approach. So, when you’re talking about mask wearing, and we bring it up within context of disabled community or people with underlying conditions or age or whatever it may be, what we’re finding in our family, it makes sense to us to talk about the disabled community. But there’s a lotta people in this world who do not have close relationships with disabled people and do not have that, aren’t in community with the people that are now carrying the burden, right? [chuckles]
GAELYNN: Mmhmm.
JILL: And I think that’s problematic. And the other thing that, as a family, we’re talking about is we’re trying to make our own decisions. Which I think your article would be really important dinner conversation for our family as we’re making decisions to hear from other people, authorities to help us think through the choices we’re making. So, I think the time for your article is really crucial.
GAELYNN: I know, yeah.
JILL: Yep. I think the timing’s perfect. And the other thing for us in our immediate community is that as a family, we don’t know people who’ve gotten sick, as a whole family. So, it still feels like this other, other invisible, scary but invisible thing that we’re trying to decide, well, we don’t know anyone. Where are we weighing the risks? Where is this happening? It’s happening somewhere else. And I think that’s dangerous, too.
GAELYNN: Yeah! Well, you know, the biggest eye opener for me, I did a conference in Washington State on Zoom, obviously, ‘cause I haven’t gone anywhere lately. But one of the speakers was this lady from New York City, and she was speaking from her apartment. She’s an older activist. She was around—I wish I remembered her name ‘cause she was awesome—but she was around when they were fighting for education inclusion and stuff. She said she has known 32 people that’ve died in the last eight weeks. And then she got all choked up. It was like, holy shit. So, like, yes, it is real, but it doesn’t, I also don’t know anyone who’s confirmed. I do know some people that I think maybe had it earlier than when they said it was in Minnesota. Because I had a group of friends passed it around, and it was just like the worst flu of their entire lives that lasted for like 12 days. It kinda seems like it might’ve been COVID, but it wasn’t reported here.
But I mean, it does feel like this invisible thing, kinda like high blood pressure, where you’re like, it’s here. I should care about it. But I don’t feel the impacts of it right now. So, it’s harder to motivate yourself to take action. I mean, I wouldn’t use blood pressure in my essay, but that is sorta how I feel we are. We’ve relegated it to like, yeah, you’re right, like the invisible, scary thing that’s not impacting me personally. And that is, that is problematic. But then once it impacts you personally, it’s too late, right? By then, [laughs nervously] 32 people you know have died! You don’t wanna go down that road of assuming it’ll never impact you.
JILL: Yeah, the road of empathy to the people who are willing to listen. I mean, who is your audience in this article?
GAELYNN: Well, to be honest, there’s two pieces. One is probably disabled people to at least feel that other people are thinking this stuff. I assume that a lot of us are having similar thoughts. I don’t know that for sure. But I can’t imagine that you don’t feel somewhat frustrated by the lack of people doing what they could be doing, right? And then the other audience is not the people who already agree with me. That’s the thing is I wanna find a way to reach the people who— I have good friends that are doing stuff that I think is really not responsible, right? Not to get back to the spiritual piece. But we can’t change other people. The biggest thing to alleviate your own suffering is to just accept what is right now and just accept it. Fighting against what is from a point and fear or anger is not the way. But I think there is a way to fight for change through acceptance of what is and yet a better future for what could be. But that is mostly just education and boundary setting, like Martin Luther King Jr. Like sit at the lunch counter until you get arrested, but you don’t have to swear at people. You just do your thing. You set your own boundary, and then you do it until change happens, right? And to me, the idea of I can set my own boundaries, and I can educate people. I can speak. I can write that blog post. But I can’t hold onto the idea that because I write that, anyone’s actually gonna change. So, I think then you can let go of the anger piece when you write it. You can just be like, this is my job to put out what I can into the world, and then, however it’s received is not up to me. I don’t remember what the original question was. This is just what I’ve been pondering.
I think just the idea of if I write it, my audience is hopefully people that don’t necessarily think the way I do. But I don’t know if I’ll even reach those people. But I would like to write it with them in mind in a way that’s compassionate enough so that if they read it, they don’t feel like the way so much of our dialogue is even in the liberal end. I mean, I really agree with a lot of ideas. But the way we’re saying stuff right now usually is like, “These arrogant, selfish people not wearing masks.” And it’s like, well, if you’re one of those people not wearing a mask, you’re not gonna finish this article [laughs] if you say it that way. You know what I mean? And then you’re definitely not gonna change! And so, I don’t know. The way that I like to do advocacy, I’m not saying that’s the only way. Somebody put it really good one time when they said that we need agitators. We need all sorts of advocates. But my personal way, I really don’t think adversarial stuff, for me, is how I wanna go. I can’t judge anyone else who does choose that language, but I don’t see it leading to a unity path. I just don’t see that happening.
JILL: I’m actually wondering, your network probably includes a lotta disabled and nondisabled people.
GAELYNN: Yeah.
JILL: So, the people naturally, I mean, you’ll get the disability community who’s gonna agree, right? But I was thinking about you specifically. How can your article get out to the people on your Sunday who’s showing up or people who may not identify with a disabled life? I think you have a unique audience that already feels like they know you!
GAELYNN: Yeah, that’s true, actually. And they can share it. I mean, it’s so funny. I just think coming around the back way has worked for me a lot. There was this conference I went to early, early into this touring, and it was in Wisconsin. And it was for like outdoor activities for disabled people. And I got there, and the language being used, like my brain exploded! Like, “the victim of a stroke” and “they suffer from this.” And, “Aw, it’s just so good. What do I got to complain about?” All the things I detest from the bottom of my soul. And then I was their keynote. And I was like, holy sh…. So, then I had to think like, well, how could I approach this? This has to be addressed, obviously! I can’t not address this. This is ridiculous. But I found a way, and I don’t mean I. I think, and I think some stuff comes from other places sometimes, you know. Your soul is smarter than you are. So, this day, I decided I was like, “And another thing I wanna talk about is language that we use around disability. Like, have you ever heard anyone say,” even though I had already heard them like five times, “say this? Well, if you think about it, it means this,” and blah, blah, blah.
And then I said, “The word ‘inspirational’ is another one that I wanna mention. Like I was walking in the hallway in the skywalk and an older lady asked me, ‘Did you put that hair clip in yourself?’ And I didn’t really think about it, and I said, ‘Yeah.’ And she said, y’You are so inspiring’.” And I used that ridiculous example ‘cause it was so over the top that even they maybe wouldn’t do that to explain why inspiration was such a bad, such a negatively-charged word so often. It’s used wrong a lot of the time. And so, the funny thing is, is at the end of that thing, they’re like, “Oh, my gosh! I realized I do a lot of those things.” I got that comment again and again and again. I think sometimes coming around the back, they can identify with it without having to feel bad. [laughs] Which I mean, they feel bad but without having to be shamed, I guess is the word. So, that’s what I’m gonna try to do with this article, is somehow make somebody see themself in it without saying, like, “You are a bad person because you are doing this, or “you’re selfish ‘cause you’re doing this,” somehow coming around the back way, if it’s possible. I don’t know.
CHRIS: Yeah. I certainly think it is possible because you are able to communicate, I mean, exactly in the way you’ve communicated to us what’s important to you and why it’s important. I think people will listen.
[folk music break]
I also think the part that you mentioned that I’m interested in, and I actually, I wanna think about it some more, is this idea that if we’re being asked to hold the burden and stay in more, that that’s just another type of institutionalization. And for me, that is a striking comment, and it’s one that I think deserves a lot of attention. Yeah. That’s connected to history, right? That culture tries to find a way to place those that are different, right, in a spot where they can be contained, right? And so, I mean, oof. That’s some heavy stuff, man. That’s really heavy stuff. But it’s rich! Are you hopeful about COVID-19’s impact?
GAELYNN: I think there are opportunities with COVID that maybe weren’t there before. So, I’m hopeful in the— I’m maybe not hopeful. I see the potential for really good things to come out of it, but I do believe that something… [sighs] like if we’re gonna look at this in the context of another civil rights movement, right, at some point— And I’m sure you’ve seen Crip Camp by now, right? I watched it quite a bit later than everybody else did. But I finally did, and I cried, like, the whole time. It’s ridiculous. But at some point, there needs to be a national turning point before change is real. The thing that, it doesn’t make me nervous. Like I’m not despairing. That’s pointless, too. But hopeful? I don’t know. I think pragmatically, if we are gonna make anything good come out of this, which I think there’s lots of awesome possibilities for working from home and making events more accessible by at least having an online component all the time. There are ways that this online stuff, even in quarantine—this is why it’s no black and white—it is good to have things online. Because even when there’s not a pandemic, I don’t drive. And so, I think it’s cool that more things are moving online. It does make things more accessible. There’s the potential for a lot of really neat things that we can’t even picture yet probably happening, right? But without the American consciousness actually hearing about this, I think that needs to happen first, I guess.
CHRIS: I agree, yeah.
GAELYNN: I just think we haven’t found, since Judy Heumann basically, right? And the only reason they busted through is ‘cause that one reporter got put on all the channels ‘cause of that strike, right? And that doesn’t mean that our fight is pointless. It should be fought anyways, regardless of the outcome, right? But I do think it’s gonna take a shift.
The one thing that makes me just a little annoyed or depressed or frustrated right now is, yes, the news is reporting about disabled people in COVID. But they’re talking about just barrier after barrier after barrier after like, they’re not getting this. They’re not getting— And this is the reality. I get it. But if you weigh, like even that PBS piece, which I think was pretty thoughtful. I mean, I like Rebecca Cokley, it was still like, man, if you weigh 14 reasons why disabled people are screwed right now and not give any real solutions, then what is the average person gonna do about this issue? It’s like talking about the Iraq war. Like, what am I gonna do about that? You know what I mean? I, as a citizen, have no influence in international politics unless I choose to become a senator or something, right? So, they’re making the issues seem so insurmountable, and there’s really some common action steps, like wearing masks that could really help, you know.
And talking about those positive things, like working from home, it’s been brought up occasionally, but usually out of frustration. Again, it’s like the way we talk about things, people are like, “Oh, you don’t like staying home? Now you know how it feels to be me all the time.” And that is a valid emotion to have, but that’s what’s making it in the news. And that is, I don’t think, helpful. Now you know what it feels like to be me is like, wow, it sucks! And then wait. So, wait a minute. Hold on. I don’t know! How can we get the dialogue to a place that actually enacts positive change? We’re not there right now. I don’t think we are. And I’m not like God or anything. I don’t know. I don’t have the overarching view of everything. But just from my vantage point, it does feel like we have to change how we have these discussions. Because either it’s the problem is so big, we can’t do anything about it, or it’s like, look at this small taste of discrimination you’re experiencing. That’s what I feel every day. Which is not terrible, but there’s gotta be another piece. We’re missing a piece that inspires people to actually take real action. And I don’t know what that piece is.
CHRIS: I think the piece is what you and Riva Lehrer and other artists— I mean, the piece that DisArt is committed to is that we understand. And we were just saying this, this morning at a talk: we understand that culture changes slowly, right?
GAELYNN: Mmhmm.
CHRIS: Legislation changes slowly. But you have to hit imagination. You have to hit consciousness, right?
GAELYNN: Like, I have a dream, right?
CHRIS: Yes, exactly. Yeah.
GAELYNN: That was not where, he wasn’t talking about what was happening today.
CHRIS: No.
GAELYNN: He was talking about what could be.
CHRIS: Exactly. But I’m even saying it’s all about giving a situation to a brain that causes learning, but that also sticks with them.
GAELYNN: Uh-huh.
CHRIS: And we have found that art is one of the best ways to do that, right? Because whether you’re watching Drag Syndrome or listening to Gaelynn Lea or you’re looking at a painting or a sculpture, you are invited into a different consciousness, a different imagination, even for that couple of minutes.
GAELYNN: Yeah.
CHRIS: That’s our hope for change, right? I mean, it’s great that you just announced on our podcast that you’re gonna run for senator.
GAELYNN: [hearty laugh]
CHRIS: I think that’s a great announcement. I’m glad you made that with us. But it does—
GAELYNN: I see! I see! Ahhh.
CHRIS: [laughs] I mean, we have amazing people who are doing that hard work.
GAELYNN: Yeah.
CHRIS: But our work, the imagination work, the culture work makes that work possible in some ways.
GAELYNN: It’s true.
CHRIS: It makes that work digestible, right?
GAELYNN: Well, and that’s what it is. It’s like, OK. So, I guess I’m gonna start— This is a call to myself to read more by like Gandhi and Martin Luther King. ‘Cause I mean, I’ve read some stuff, but I would like to read more. Because if you think about their formula, it’s like, hey, I’m envisioning this world that doesn’t even exist right now. Here, let me tell you about it. And then here’s some actionable ways to get there. Maybe that is the piece, to me, that is missing. And I think art is a part of that piece, is like, let’s reimagine the world in this way. But I think the actionable steps that any citizen can take are maybe missing. Maybe. I don’t know. Yeah, I’m just trying to think like if there’s anyone that I would ever want to emulate in my work, it would be someone like him, because I just, like the impacts, racism is obviously not gone. But like he had really lasting impact. It’s not just like a trend and then it went away. Because it was so though out of like, how do I bring more and more people on board? I don’t know.
Maybe the other last thing—Sorry. Rant, rant, rant, rant, rant—but I read somewhere that when he was assassinated, his disapproval rating was like 75%. And so, I think government is really important, but it might not be where change comes from until they champion a piece that already has a lotta roots. Because governors and legislators and senators don’t want a 75% disapproval rating. Martin Luther King didn’t care, [chuckles] obviously, right? He was like, this is important, and we’re gonna fight for it. So, I think outside of government is where some of the groundwork gets laid for a governor, or I mean, a senator or a representative to pick up the mantle and then make it into law. But there needs to be all this creative work done first by people who don’t care if they’re well loved, ‘cause they might not be. This has got me thinking. It’s not where I was expecting this conversation to go, but it’s good.
JILL: You’ve gotten us thinking, and it’s actually really exciting and an honor that you’re gonna leave this conversation thinking as well. That’s the beauty of this.
GAELYNN: That’s true. [sighs] Yeah. That’s why the community of disabled people is really important right now to have places to talk about it.
[folk music break]
I have a real question for you guys. How do you think we address— I guess it’s just like lead by example or something, but I do feel like media on every end has gotten really charged with this negative energy, and I don’t see it helping our cause. But I don’t know how to address that. ‘Cause I think it’s also important to be compassionate, but some people are really rightfully pissed off. And like not trying to squash their pissed off-ness. I don’t know. I haven’t figured this out. But this is one reason I guess you just gotta do your own way, and then if it resonates, people will think about it, right? And then just let people be themselves. I don’t know if there’s a way to address the dialogue directly or not. I’ve thought about it a lot. Even in the disability community, there are times when I’m like, ooh, this does not feel like what I wish we were saying, but it’s not just me. And I guess I can just let people do their thing. It’s just hard, though. I don’t know.
CHRIS: I could get going on this for a while. But I remember watching Ed Roberts when he was alive still. Do you know, Billy Golfus?
GAELYNN: When Billy broke His Head or something, right?
CHRIS: Yeah. Yeah.
GAELYNN: I haven’t seen it. I’ve seen previews for it. I should watch it.
CHRIS: There’s a wonderful part in there where Ed Roberts is getting interviewed. And he said, “You know, people tell me I’m an angry cripple, and I say mean, stuff.” And he said, “But you know what? Anger is the biggest thing we’ve got going for us right now.” And what he’s saying there isn’t that we should be angry, but that our motivation, right, that we are fueled by a righteous disappointment, right?
GAELYNN: Yeah.
CHRIS: And so, I totally see what you’re saying, that there’s points in the conversation right now. So, like I would say, on one hand, you have someone like Crutches and Spice. You know her?
GAELYNN: I know of her. I don’t know her personally.
CHRIS: OK. Well, she’s rocking it. She is saying some pretty harsh things, right? So, you have that on one side, but then you have somebody like Mia Mingus, whose compassion and ethics of love and care are saying it, too. So, again, I think we need the kaleidoscopic voice. I really think we do.
GAELYNN: That’s probably true.
CHRIS: But I think for you, if you’re looking for voices that are saying it with more tenderness, Mia Mingus is whew. She’ll blow your brain, man. She is, yeah. She’s fantastic. But yeah. My opinion would be that we need all the voices. In DisArt, we talk about the importance in our mission and our vision, guiding principles, one of them is disruption, right? And so, disruption doesn’t have to be negative, right?
GAELYNN: No.
CHRIS: Disruption to be literally something that makes you stop, right? I don’t know. I think we kinda made a conscious choice, well, maybe unconsciously that, we weren’t going to be the organization. Like we weren’t gonna be ADAPT, right? We knew that we weren’t gonna be ADAPT, which are, they’re out. And they are doing some very, very hotly political demonstrating, right? They’re doing some really awesome work.
GAELYNN: Yeah.
CHRIS: But I think early on, we knew that we wanted to, again, get in that imagination space. And how do you get in that imagination space if you are pushing too hard with— I mean, we love transgressive art, but if you push it too hard, right, people just shut off, right? It’s a tiptoe, right? It’s a tip toe. You have to sorta balance. But, yeah, I think all those voices are certainly necessary, yeah.
GAELYNN: Yeah. It’s not my place to judge where someone’s coming from anyways. I read this one Buddhist meditation where this lady asks this guru, should I do a women’s meditation group. Or I’m a recovering alcoholic, should I do a one for that? Or what kinda group should I join? And he’s like, just join a group of people. It’s not, the end goal is not division anyways. The whole point is that we’re all one. And that’s sort of a spiritual take on it, I guess, but that’s kinda where I’m coming from. So, it is hard for me to digest that some of the work that I read feels almost as divisive as the rhetoric on the other side. But that might, I might be seeing it through my own lens, or maybe, and there probably is value to it that I don’t see. Like I can’t see the whole big picture, but in just the idea that we’re asking people to go on a limb and accept that everybody has value, I feel like we need to, personally, I feel like we need to then extend that dignity to all people, including those that are not understanding of us. ‘Cause otherwise, it feels kinda hollow. This has been a very thought-provoking discussion.
CHRIS: Oh, I have had so much fun! This is like, this is a perfect Friday afternoon, to sit and talk about stuff that matters, you know?
GAELYNN: Yeah!
CHRIS: Thank you for your time, man. This has been, really, really awesome.
GAELYNN: Yay! Thank you for having me!
[gentle folks music plays under the next few lines]
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.
♪ Need advice, need advice
You have no clue what you’re doing
Moral compass it is spinning
And identity unhinged
Where to turn, where to turn?
There are so many opinions
And they’re all a little different
And the outlook’s getting dim
What makes you think that you’ll ever get there?
What makes you think you deserve to know?
Who are you really, are you so important?
Take a look around and watch the world unfold
Watch the world unfold, watch the world unfold
Pushing up, pushing up
Through the dirt just like a seed
But you’re never quite a flower
You feel more just like a weed ♪