Podcast

Interview Date | May 19, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into pensive piano music for the next few sentences]

OAKLEE: My dearest friends, life with a disability is hard. Having been both abled and disabled, I can say with full certainty that life with disability is difficult. My disability does not stop me from having a happy life. My reality and way of life is different than an able-bodied person’s. But that does not mean that it is inherently less than. It doesn’t mean that my life isn’t worth living. Oaklee.

My name is Oaklee Thiele. I’m a disabled artist and a service dog handler. I can’t really separate my art from my life. Like it’s so intertwined and all meshed together. And it’s something that has helped me cope with my disability. Art has been the way that I sort of process things, I guess. And I guess I’m an abstract artist.

JILL: The first time we met you, you were not a service dog handler.

OAKLEE: I was not, yes.

JILL: And so, now your first way to describe yourself is an artist and service dog handler.

OAKLEE: Mmhmm.

JILL: And I’m really interested in how that has become one of the top thing that you identify.

OAKLEE: That’s a good point. Yeah, I actually, I had a conversation with an artist recently, and we were talking about different presences within our studio, like how because of COVID-19, our studio spaces are completely different. And some people have had to move into their apartments and create work there. And we have different people around in our space now. And how does that impact our practice? And when I told her, I was like, you know, “I’m a service dog handler. And Coco, my service dog, she is constantly with me 24/7. So, I’m used to having that presence with me.” And she was like, “Doesn’t that get annoying? Like, isn’t that weird having a dog constantly on your heels and bumping against you and all of that?” And Coco, for me, has become almost an extension of myself. I am so used to having her that, you know, if we spend two minutes apart, it feels like my soul has split in two. And that sounds a little dramatic, but I’m so used to having her beside me. So, it’s become very seamless.

And she absolutely loves the studio. Like it’s her second home, and she’s very used to it. We’ve even gotten to the point where she’ll actually make pieces with me. So, she’s actually participated in some performance pieces with me. I had one piece where I was exploring our tracks, so the traces that we leave behind and the marks that we now make, and how my footprints are different. Because I am a service dog handler, you will always see her footprints with mine. So, of course, we use only natural materials. And you can see us walking beside each other along this giant installation that I had made. It was very funny seeing her react to her piece because after it was all said and done, you know, this piece is huge. It’s taking up a lot of space in our studio, my studio, I guess, her studio, too. But she was very, very precious with this piece. Like, she wouldn’t wanna touch it, didn’t wanna run through it after it was done. She was very certain not to disturb it. I don’t know. I guess we’re sort of bound together now.

CHRIS: It’s interesting to hear you talk about that as being bound together or like a part of your, you know, an extension of who you are. A lot of disabled people talk about their equipment and/or their adaptive material as that as well, right? So, I have a very sort of spiritual almost connection to my wheelchair, right? And it’s just, I love that. I’m not comparing Coco to a wheelchair, but what I am doing is thinking about the fact that the disabled life is, by its nature, interdependent, right? And Coco and you seem to be animating that for people and letting people sort of know that. I mean, that puts a lot of pressure on you and Coco, but it’s also something that I don’t know. To me, it makes complete sense for you to say that she’s a part of who you are. And she’s a pretty important part of who you are, ‘cause as we know her, I mean, this is how I understand: she’s there to make sure that you’re good to go, like that you can do life, right?

OAKLEE: Mmhmm. Yeah. It’s wherever I go, she goes. Yeah.

JILL: And you have a playful relationship with her.

OAKLEE: Oh, yeah!

JILL: It’s an animated relationship when I’ve seen the videos. You may be working, and then there’s pauses to interact. Or she moves around or you move around. And there’s play that happens between you.

OAKLEE: Yeah, she’s got quite a personality. [laughs] I don’t know. She’s made me very happy, and she’s helped me regain my freedom and my independence. Because for a really long time, you know, the PTSD sort of took over, and I was incapable of doing a lot of things. So, having her by my side, I’ve been able to experience a lot of things for the first time. And I guess we experience a lot of things for the first time ‘cause there was so much stuff that I was able to do before the PTSD that I can now do again with her help.

JILL: And she’s a very much part of your art. You talked about her participating in your art, but she’s also the subject of a lot of your art.

OAKLEE: Mmhmm. Yeah. I think it’s just very interesting, this bond that we have formed. It’s a bond that I haven’t experienced with any living creature before, human or dog or otherwise. But I think it’s the fact that she sees me in these very vulnerable moments that I don’t allow anyone else to see. So, during these PTSD episodes, I am very careful to lock myself in my room and not allow my friends or even my family members to know that it’s happening. She’s been the only one who’s sort of been able to bear witness to this. We do experience some very, I guess, stressful and intimate moments when she’s tasking and helping me as she’s been trained to do.

[chill ambient music break]

CHRIS: I really like your use of that word “bearing witness.” And I wonder if it brings up a way to talk about your art, too. Because in some ways, your art is bearing witness as well.

OAKLEE: Mmhmm.

CHRIS: And I wondered if you might start with telling us a little bit about early art for you, like how art has changed over your career. We’re collaborating with you, and we know your brilliance there. But what were you bearing witness to in your art from day one?

OAKLEE: When I had initially started art, it was around the time that I was diagnosed with PTSD. I was struggling a lot to retain memories. I couldn’t remember what had happened to me in regards to the traumatic experiences, but I also just couldn’t remember that same day. So, being able to create art was incredibly helpful for me to know. Like I could know for a fact that this certain event did happen because there was a painting about it. And I wouldn’t have painted it if it didn’t actually happen. And so, that was kind of how I was able to process that and again, like you said, bear witness. For a long time, it was really focusing on what happened in regards to trauma. And then it sort of developed into this witnessing recovery. It focused on recovery. And then after a few, I think like one or two years of that, it then transitioned to focusing on Coco and the bond that we share. And at this point now, it has also started to focus on disabilities.

Initially, with my PTSD diagnosis, I was very, very reluctant to acknowledge the diagnosis. I also didn’t want to label myself as disabled. I originally viewed that word as a bad word. I was like, you know, that is not me. I am not disabled. I guess it took a lot of time and just processing and talking to people, talking to other artists, talking to my friends. Initially I did view “disabled” as a bad word. And it took a while for me to come around and realize that it’s not.

JILL: So, it sounds like, I mean, you’ve gone through a journey.

OAKLEE: Mmhmm.

JILL: Your art is showing that journey and that growth. We’ve known your story from earlier with the award or the intro to disability culture and have seen then this development to you now being a disability advocate, a strong advocate for other people in your community who is like your community now.

OAKLEE: Yeah.

JILL: And I would say this is in less than a year of where you are now. I’m curious, what do you attribute that personal growth to?

OAKLEE: Mmhmm. I think there was a few points within my career. Like I said, I did win that award with the John F. Kennedy Center, the VSA Emerging Young Artists Award. And having that acknowledgment from them. I was very reluctant to label myself as disabled, and people started calling me a disability advocate before I would acknowledge that myself too. Like people would call me disability advocate. I’m like, “Nope. Not that. I’m disabled, but I’m not an advocate.” I don’t know. It took me a really long time to acknowledge my disability. And then it took me more time again to be able to strongly say I am a disability advocate.

CHRIS: What did that word “advocate” mean to you when you said no and then eventually said yes?

OAKLEE: I think for a while, and I still do sometimes, I struggled with is am I disabled enough, if that makes sense? Like, my disability is invisible. And so, if I didn’t have my service dog with me, I could walk down the street. No one would know that I struggled with what I struggle with. And so, there are a lot of times where I feel as if it’s almost invalid. And I have to keep reminding myself that this is something that I do struggle with daily. And just because my disability is invisible, it’s still valid. I guess the other part I just, coming from an understanding that my disability was valid was part of what I needed to be able to label myself as an advocate, but I feel like also, I don’t feel like I had enough knowledge or know how. Or I didn’t think of myself as a leader when they initially started calling me an advocate. And I think I didn’t see my life going down that path. I didn’t think that I would have been disabled. I didn’t see my life as being a disability advocate. That’s not, I guess, what I had planned. And I fought it for a very long time.

But it feels very right now, and I’m very proud to be disabled. I’m very proud to be within, to have this community surrounding me and to have the support. And I want to work to make things better and more accessible for us. I feel like this world has been built for able-bodied people. This world that we live in has not been built for us. And it’s incredibly upsetting for me. And so, if the only thing I do with this life that I have is rebuild this world in a more accessible manner, I’d be happy with that.

[pensive piano and electronic music plays under next few sentences]

My dearest friends, let’s make a few things clear. I am disabled and proud. I am disabled and happy. I’m disabled and equal. Oaklee. 

JILL: I’m actually curious about being disabled enough. Now that you have Coco, you’re able to do a lot more. How do you, or is it even a question of, am I disabled enough if I’m able to do more things?

OAKLEE: Yeah. That is an odd question. I mean, it’s an odd question. It’s a good question, but it’s like it’s something that I haven’t thought of, I guess, the fact that I can do more things now with her. I don’t know. You’ve stumped me, Jill.

JILL: Maybe it’s because of the acceptance that you have, and this is where you are in your life, and even without Coco by your side….

OAKLEE: If I didn’t have Coco, I would definitely lose a lot. Like without Coco, I wouldn’t be able to do, it would just go right back to the beginning. So, I mean, I love her to death. She is the most precious thing to me in this world. But in the most, I guess cut and dried, black and white terms, she is essentially medical equipment. So, without her, the PTSD symptoms would just be so overwhelming that I wouldn’t be able to function. So, that is still always at the back of my mind. The disability is still very, very present, but it’s managed greatly by Coco and all of her hard work and her focus and everything.

JILL: Yeah. And it went from invisible to visible.

OAKLEE: It did, yeah. And that was a very big transition for me. I am still not used to, like, we’ll walk into a store, and people will point and comment. And I’ve had people film us, which has been weird. But there’s been a lot of reactions, and typically almost every single person will react more so than not react. So, I’ve learned to expect it when I get into a store. But it’s still, it’s strange, I guess. I’ll go to the store with my friends or with my sister, and I always have to kind of prepare them. I’m like, “You know, people are going to point and stare at us, and it’s because I have Coco.” No one’s really prepared for it. It stresses me out. It stresses my friends out. But I think what’s upsetting for me is I’ll be in a store, and there will actually be people who will point and be like, “Oh, my god, it’s a dog.” And then they’ll bring their entire group of people over with them to point and say. I end up feeling almost like a zoo animal. It’s an awful, awful feeling. It’s something that I never experienced before without her, I guess. I don’t know. That was one of the biggest things. My family didn’t want me to get a service dog because of that fact, like I went from having an invisible disability to having a visible one. And that came with a lot of cons.

CHRIS: How’d you navigate that, that part of it?

OAKLEE: For me, the PTSD continued to develop. It got worse and worse, and nothing was helping. And it got to the point where it was very much like, do I take this service dog with all of these cons and a little bit of pros, or do I try to continue on this very rough path of battling this PTSD without a service dog? The PTSD was so severe to the point where I couldn’t function without a service dog. She offers me this independence. And the fact that she can do that outweighs any sort of con that would come with it. So, I would much rather have this independence that she offers me even though it does come with discrimination and accessibility issues and people staring.

CHRIS: What I’m finding very dynamic about it is that what we’re really kinda talking about is a coming out narrative.

OAKLEE: Yes.

CHRIS: We’re talking about you getting to a point where you felt like you could own it, right? And that you had to own it unless, you know, in order to live. That’s a very dramatic thing that I think a lot of disabled people have to do.

JILL: You’ve had to challenge all those preconceived notions that you developed over the years that our community our media our messaging is feeding into us about less than. Which is what you talked about in one of your submissions that you read, is that challenging that less than is what you were thinking of yourself as well at the beginning.

OAKLEE: Yes.

CHRIS: And I must say that there’s some determination in that letter that you read where you say, let’s get a couple things straight.

OAKLEE: [laughs] Yeah.

CHRIS: Right? And I fucking love that. I think that is the kind of attitude that an advocate has, right?

OAKLEE: Mmhmm.

CHRIS: It’s refreshing, and I think for some it’s gonna be encouraging, to be able to say like, dang. This is it. Just get this in your head, you know?

OAKLEE: That quote where that came from, I don’t know if you know the backstory to that quote. But I was having a conversation with a friend. There’s been so many different reasons that people have been throwing out there as to why they should be denying disabled people medical care during this time, during the COVID-19 crisis. And I’ve heard so many different things from a person who is disabled, what is their life span going to be? If they’re only gonna have five years, maybe we should give it to someone who’s gonna have 20 or 30 years left. And I’ve also heard, you know, what is their quality of life? My friend had argued, is a disabled person actually happy? Can you be happy and be disabled? Can you lead a happy life? And he questioned that. And I was just fuming! I was so upset! I was like, I’m going to explain this all to you and put you in your place. Like this is not OK! You cannot think things like this. That’s where that quote had came from. I’m shaking from anger right now. [laughs] But of course. Of course I can be disabled and still be happy. I’m incredibly happy. My disability, it’s difficult to live with, but it doesn’t prevent me from leading a happy life. So, that’s where that quote came from.

And I actually also started this series of weavings that I’m currently working on. My first weaving that I did, it says, “I am disabled and equal.” It’s all text. The text is made out of different colored thread. And it was just a way for me to be able to meditate on this saying: the fact that I am disabled and I am equal. Because I mean weaving is, it’s a long process. It takes a while, and it’s very repetitive. So, being able to just mull over that saying was very nice. So, that was the first weaving of that series. And then that series will continue to say, you know, “I am disabled and happy. I am disabled and proud,” as I continue to declare these things.

[chill ambient music break]

JILL: So, that gets us in to you’re working on more than the My Dearest Friends project.

OAKLEE: Oh, yeah. [laughs]

JILL: Love to hear about all the tentacles of work that you’re doing.

OAKLEE: [laughs] Oh my gosh. I am working on a lot. I’m very, very tired, but I’m very happy. So, I’ve got, let’s see. I’m scrolling through my work right now to try to figure out what to talk to you guys about. OK. I would like to talk about this piece…. One of the recent things that I have started doing, I don’t know how much you guys know about this, but I have been experiencing extreme chronic fatigue. And it’s to the point where it’s debilitating. Like I haven’t been able to access the second floor to my home because I can’t walk up the stairs. Sometimes I can’t walk or I can’t get out of bed. I can’t hold a pencil sometimes. The fatigue varies. And there’ll be some days where it’s just completely debilitating, and I can’t do anything. And I’ve been working with a team of doctors, try to figure out what it is. We haven’t been able to put an exact diagnosis on it. It’s just been lots of testing, lots of procedures, lots of ableist suggestions, which have put me back more. But as we’re trying to figure this out, I’m still attempting to create art despite this physical chronic fatigue. So, because of how severe it is, I’ve actually had to create custom tools so that I can continue working on these large-scale pieces that I have been commissioned to work on.

I have this new piece called Pandemic 2020. I mean, it’s nothing great. It’s a lot of papers taped together. It was like, it’s a rough piece, you know. And that was OK with me, because the main purpose of creating this piece was to learn how to use these tools that I had just made for myself. It’s been interesting finding, I would find wooden rods around my home, and I would tape charcoal to one end and a paint brush to the other so that I can stay stationary and then flip the rod in different directions depending on what tool I needed. And that’s worked very well. I still get very fatigued. I still get blurred vision. And I end up losing consciousness by the end of the piece. But I’m able to do it, and I’m able to complete it. So, that’s been, I don’t know. Art is such, like I’ve said, art and my life are completely entangled. And so, I can’t, there’s no way that I can separate myself from art. Despite any sort of physical or mental impairment, I can’t stop myself from creating art. So, no matter what happens with this fatigue, hopefully they can find something that will help it. But if they can’t, if I have to continue on like this, I will find ways to continue making. Coco has mistaken these new tools as toys! So, she has run off with them a few times. And that’s been crazy! But. [laughs]

Let’s see what else I’m doing. I have been doing a photo series for quite some time that’s been on my relationship with Coco. You know, we’ve traveled across the U.S. for exhibitions and for public speaking events that I’ll do about service dogs. So, there’s photos of us in the car and in the hotel and her working life. There’s so many different circumstances that we’re in, and it’s just great to be able to see her reaction, to see how she looks up at me. And I think it’s also really important for people to be able to see the private life of a service dog. I’ve had so many misconceptions where people believe that, oh, she’s working 24/7; she doesn’t get to have any fun. And that is completely untrue. She has time to relax. We have so much fun together. She loves working. That’s one of the most exciting parts of the day for her, is getting out and putting her vest on and stuff. So, I love working on that photo series and showing people that part of our life, well, the whole, our whole life, I guess.

And that photo series has changed a little bit, actually. Because of COVID-19, all the photos looks so different now. You can see me with my mask, and the stores are empty. Obviously, of course, I didn’t expect my series to take a turn like that, but it’s been interesting to see that development, too.

CHRIS: There’s a series that you did of shots with there’s a bed and you and like a weighted like concrete?

OAKLEE: Oh, yeah! Yeah.

CHRIS: Can you talk a little bit about that? I find that’s just completely striking. I love that one.

OAKLEE: I actually did that for my college application for Cooper Union. So, that’s not part of my typical work, but it definitely still touched on the PTSD. Part of the prompt that Cooper Union gave me was to create a blanket. I didn’t want to do a typical blanket, and for me, because of the PTSD, I need weight. Like having weight around me when I sleep just it helps me immensely. And so, I use several weighted blankets at a time. Sometimes Coco will actually sleep on top of me. That helps calm me. And so, I ended up creating this blanket full of concrete slabs. I think it ended up weighing about 170 pounds. And so, with those concrete slabs, I ended up sewing this clear chiffon fabric around it. And then those, that whole blanket was laid on top of me. I actually found it very, very comforting. It was a very comfortable piece. And I don’t know. It was interesting to see people’s reaction to that piece ‘cause they were like, it looks, the photograph itself, it’s very peaceful. It’s kind of, you know, it looks nice. But they’re also like, “I would never want that. That looks, the blanket itself looks uncomfortable and horrible to sleep with.” But, yeah.

CHRIS: What I love about it is that it takes something like comfort, home, safety of the bed, but then completely deconstructs it to something that is both comforting, but comforting in a way that you need it to be comforting. To me, it seems like a rejection of everybody should experience the same thing—

OAKLEE: Right.

CHRIS: —at the same time, in the same way. I just thought for me, it’s like it’s such a clear message of disabled experience.

OAKLEE: Mmhmm.

CHRIS: Because you can still see beauty in it, and you could still feel, like you said, it’s very peaceful. It’s very joyful. It’s very safe. But it’s also concrete, right?

OAKLEE: Yeah.

CHRIS: It’s this piece of concrete. And so, I just, yeah, I’ve always been really moved by that piece. I think it’s just wonderful.

OAKLEE: Yeah. And I mean, going off what you said too, I had another conversation where, you know, accessibility. Everyone experiences disability differently. For me, having PTSD, I have several other friends who have PTSD as well. And they’re terrified of like, oh, I’m gonna have to get a service dog, and I’m gonna be experiencing this fatigue that you experience. And I explain to them, you know, your PTSD is gonna look different than mine, and mine will be different than yours. The fact that everyone experiences disability differently also means that accommodations should be different. There’s not any sort of universal accommodation that you can make. It needs to be specific for that person. And I think that’s something that businesses, restaurants, the public needs to start acknowledging.

[chill ambient music break]

CHRIS: It’s just so great to get a chance to chat about some of this stuff, I think. You know, I love the fact that when you started, you said that you work abstractly. And I’m curious about how that idea of abstraction connects to what we’re talking about right now, right? That realism and/or representational art, there’s assumptions there in that type of art that, as a disabled artist, you’re already sort of pushing against. And I’m curious why you were originally attracted to abstractness.

OAKLEE: One of the biggest things is, I still want people to be able to, I guess, connect to my art and my experiences. I know that being a disabled artist, having PTSD, different things like that, it is my own experience. But people also experience things that are similar. And I want them to be able to imprint their own experiences and sort of relate to this piece through their own life, if that makes sense. But by working abstractly, people can interpret it I guess other ways. There’s a million ways that a person can interpret my piece, and that’s completely fine with me. I’m also a very impatient person! I like to see things happen instantaneously. And if a piece takes more than a week, I’ve kind of lost interest at that point. So, even with the weavings, I work on it day in and day out. And I can complete a weaving typically within one to two days ‘cause it’s, I just do it nonstop before I lose interest, I guess. But, yeah, working abstractly, I’m more concerned about the emotions that I’m currently feeling as I create the piece versus creating an accurate, a physically accurate representation of what I’m depicting.

JILL: I’m curious if you’re still archiving. When you talked about early on, art created a way for you to keep memories.

OAKLEE: Mmhmm.

JILL: And it felt like you were archiving and storytelling.

OAKLEE: Yeah.

JILL: Is that staying true in your work now?

OAKLEE: Yeah, I think definitely. I mean, I still will paint things from my everyday life, and I will still write down. A lot of pieces have like little, short paragraphs too that I put together that explain the piece. And so, every piece I make is drawn from an experience that I’ve had firsthand. So, it’s all drawn from my life.

CHRIS: There’s parts of your work that, like you said, speak to particular moments in your life. What does the My Dearest Friends Project, what will it say to people about you as an artist in 10 years’ time about this time in your career as an artist?

OAKLEE: For me, the My Dearest Friends Project was definitely a turning point in my career, not only as an artist, but also as an advocate. Like I said before, I was very reluctant to call myself an advocate despite my friends doing it and other organizations. I mean, I still had, I’ll go out and do public speaking events, and they’ll label me as an advocate. And I’ll be like, that’s not really me, but, OK. This My Dearest Friends Project has sort of allowed me to accept that after creating this, I’m like, OK, I am an advocate now. It’s been on a scale that has been so much larger than what I ever expected or dreamed of.

[pensive music plays through next few sentences]

My dearest friends, my disability doesn’t cease to exist because of a pandemic. I still need to attend appointments. I still need my medications. I still experience flare ups. And I’m fearful because right now the healthcare system seems more fragile than ever. Oaklee.

When I wrote the initial My Dearest Friends poem or the open letter, whatever we want to call it, it was just me in my studio completely distraught and upset over how the disabled people, the disabled community, was being treated during the COVID-19 pandemic. The purpose of the initial open letter was just for me to feel the feelings that I had and be done with it. The fact that DisArt chose to sort of pick up this open letter and use it as a foundation for us to build this platform on was something I didn’t expect, but something that I’m very, very glad. I’m so glad it happened because it has connected me greatly to the disabled community that I initially didn’t have a lot of connections to. I felt part of it, but now I’m gaining so many contacts and friends from this project. I mean, I’ve had people message me from across the world telling me how this project has impacted them and has helped them cope and what it’s made them feel. And being able to have those discussions with different disabled people has been, you know, life’s changing.

CHRIS: I was thinking about what’s this project done for us as an organization, and what’s our growth been through it? And I think before this project, we had had the situation with Drag Syndrome where we had had to stand up or really fight for the— Stand up. [chuckles] Way to go ableist metaphor from the crippled guy in the chair.

JILL: [laughs]

CHRIS: [laughs] That we really had to fight for the rights of disabled people for the [laughing] for the first time. She’s laughing!

JILL: I’m sorry!

CHRIS: [laughs] But, you know, so, that was our first, I don’t know, foray into what I would call like activism, OK, public activism. But by the time we got around to this project, I felt like it was a lot easier for us to take on that advocate/activist role. I don’t know. What do you think, man? Do you agree with that?

JILL: I think the circumstances are completely different.

CHRIS: Oh, no. Absolutely! Yeah, yeah.

JILL: I mean, we…. This project is not eliciting hate responses that I’m aware of.

CHRIS: Right.

JILL: Which is wonderful, because there’s people who are being very direct in what they’re saying. But it comes from a place of honesty. You know, you can’t debate someone’s personal lived experience. Drag Syndrome, people felt that they could debate the decisions by a group of disabled artists. Maybe as an organization, we solidified what our role is in terms of being hopefully part of the movement and part of the group of people who are advocating for themselves and for other people. And I think that just like you, Oaklee, this project has allowed us to make connections with people that I’m not sure our paths would ever have crossed. It’s really beautiful to take a community that I’ve already experienced as very connected—disabled community feels very connected—and to expand that. That’s what we love to do, is make connections and see where people can just take off with it. So, there’s seeds being planted through this project, and I’m just thrilled by that.

CHRIS: Yeah. I mean, for us, it’s yeah, it’s been unbelievably, well, like Jill said, just powerful to be able to be a part of the stories, you know, and be a part of telling that story. I guess what I was trying to think about though, too, is that to me, because of COVID-19 and because of the sort of humanitarian elements of it, and that’s kind of where we started when we started to think about disabled people being depicted as expendable and disposable and etc., etc., for me, it felt like I couldn’t do anything but this. I don’t know if that’s explainable or not or if that explains it but.

JILL: In working closely with you, I think there was a clear sense of urgency in the beginning. Before it hit a rhythm, it was a lot of energy and time going into this project because people are experiencing discrimination and being discounted right now, right?

CHRIS: Right.

JILL: And to me, that’s what this felt, is a sense of urgency. Like Oaklee, you said even if it was for yourself, which it was initially, you had to do something right now.

OAKLEE: Yeah.

JILL: And if we can take those pieces or those submissions or the interviews that many people are feeling they want to have an outlet for those feelings, if this project has done that, then that’s goosebump time, you know, right?

OAKLEE: [chuckles]

JILL: Some people, we don’t know what our outlet is. We just know that we have to have someone who will listen.

OAKLEE: Mmhmm.

JILL: I consider your work as a call and response. People are calling out, and you’re responding immediately. I mean, your turnaround time. [snaps fingers] I know that you have down days, but you really crank out these responses. I think that’s really validating to people, that they’re being heard in this short timeframe. You’re validating, every time you create a submission or a illustration, you’re validating what someone had to say, without judgment. And I think it’s beautiful.

CHRIS: Yeah. You guys are fun to work with. I’ll just say that.

OAKLEE: [laughs]

CHRIS: Both of you, I love you guys. This is great. It’s good to reflect. I mean, we’ve been doing it for two and a half months, right? Two months or so, two and a half months.

OAKLEE: Yeah. It doesn’t feel like that long, but yeah.

CHRIS: And we did it right here. I mean, we did it from our rooms here. And I think that that’s one of the promises of technology and this whole COVID-19 thing. We’re all in our own separate, safe shelters but are still trying to do good work. Yeah. I’m so glad that people are responding to us. It’s great.

OAKLEE: Yeah.

CHRIS: [long, slow sigh]

OAKLEE: Jill, I really love the way that you interpreted My Dearest Friends. I think the thing that you said about you having the illustration as a response, I never really thought of it that way. But it’s completely true. And I really love looking at it like that.

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music: “Marée” and “Salue” (Source: freemusicarchive.org. Licensed under a Attribution License.)