Episode 21: My Dearest Friends Project
A conversation with Oaklee Thiele
Jill: From DisArt, it’s DisTopia.
For the next several episodes, the DisTopia Podcast will be archiving DisArt’s My Dearest Friends Project. It’s a project generously underwritten by the Ford Foundation.
The My Dearest Friends Project is a way to share our experiences, 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.
The first component of this project is created in partnership with Disabled artist Oaklee Thiele who is creating black and white illustrations in response to submissions from the Disabled community.
What you are about to listen to is a series of recorded conversations with Disabled people about their individual experiences with the COVID19 pandemic, and the personal, cultural, and political alterations it has triggered. Guests are given the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions of individual passion, vocation, frustration, aspiration, and strategies for living an authentic and pride-filled Disabled life.
Check out @mydearestfriendsproject on Instagram and DisArtNow.org for more information.
My dearest friends,
We mustn’t let this be forgotten-
The time the world gained
Perspective on a small portion
Of our struggles. We must
Make sure that this moment
Goes down in history so
That we can build a better world
A more accessible world
A world for everyone
A world for us
Jill: Thank you, Oaklee, for sharing your words and for being the impetus for this project which is called My Dearest Friends Project and now which has turned into a DisTopia project as well where we’re really trying to bring together, the collective voice of the Disabled community during what we would all consider an uncertain time with the COVID-19 pandemic.
Chris: Maybe the best place to start is with you, Oaklee, and why writing that and doing the sketches that you were up to during those first couple days. Why’d you do it? Why’d you feel like you needed to put that out on social media?
Oaklee: Yeah, so, I Like everyone else had been reading so many different news stories and articles about the pandemic and about specifically how the Disabled community was at the highest risk and it kind of seemed like that was okay. People didn’t really seem too bothered by it and that was very very upsetting to me. I kept witnessing Disabled lives kind of being tossed aside and I had written that letter in response to all those articles and it was just kind of my way of addressing my Disabled community and kind of begging them to remember this pandemic, remember what happened and that it was my way of promising them that after this was over, after this crisis was done that I would make sure that this world is more accessible for everyone and specifically for us, for my Disabled community. And so I had started, again doing a little bit of illustrations as well because I was starting to learn of specific instances where my friends were experiencing mistreatment either when they’re out grocery shopping or anything like that just because they appeared different. They needed a mask to keep their health safe; to keep them safe and they got discriminated against because of that. I did start making illustrations on sort of specific experiences and it kind of just, you know, you guys got involved, DisArt got involved an it kind of evolved into this much bigger project which I’m so excited and happy about because, you know, like you said we’re able to now display these real life experiences, these real voices from Disabled people and we’re hearing it right from the source and it’s unfiltered, it’s not changed, it’s very true and real.
Chris: Yeah, and I think for us and I’ll let Jill, you can talk about this too, but I think for us we’re always looking for ways to disrupt that normal, normalized non-disabled narrative which, you know, we do on a daily basis at DisArt with the exhibitions and the work that we do but it just seems so vitally important at this very moment to hit the pause button and say, “Wait a minute. We are more than just a buffer layer for humanity. We are, in fact, people who live lives that are very adaptable and a lot of us live in isolation. A lot of us have social distancing as simply part of our daily lives and so I think, Jill, that’s really why we started thinking about like okay what’s needed right now. I guess that’s a big question for us. It’s always “What’s needed at this moment?”
Jill: From my perspective what’s needed is the collective voice of the Disability community and I think that’s what we all think about this project and we’re at the time of this recording, we’re over 40 people who have submitted and that’s really exciting. We’ve just been doing this for about a week. What that does is it takes the, it creates this collective opportunity to share an experience while we’re all sheltering in place. But it also makes it so Chris and I as the leaders of a nonprofit organization aren’t the ones speaking all the time. I think that’s something that’s really important to us from Voices to any of the projects that we’ve done to My Dearest Friends Project to the DisTopia is making sure that we are creating a platform and an opportunity for people to have their lived experience of disability validated on a regular basis and if it is just the two of us speaking which we could, we could write to our hearts content but we felt that that wasn’t going to be as impactful as calling on all the people. Not just in Grand Rapids. Not just in Michigan. Not just in the US but around the world who can relate to this experience that we’re all sharing.
Chris: And so the process is very easy for people. You write an email to firstname.lastname@example.org and it’s a shortened stanza or a poem or a statement, it’s not even a poem, it’s just a statement about a reality, about how things have been changed for you during this pandemic. What’s our character allotment? I always forget how many characters they can send in.
Chris: 280. So we’re trying to stay within the twitter family so that we can really share this out and so it was all based Oaklee’s original post and now, as Jill said, we’re getting all these really powerful statements from people who are… Quite frankly it seems like we’re all so thankful to have a place to talk and a place for these pieces of information not only to get out to us as a community, a Disabled community, but for others to be really interested. I think that’s a main point that we want to make sure to cover here, too, that this is a project for all of us to pay attention to and for nondisabled and Disabled people, alike, because of, of course, there no community without some sort of connection between all of us and so that’s a really important part. So, one of the things then that we’re going with the podcast is we’re sort of extending that and we’re talking to some Disabled artists and activists and other folks in the world about how their experience has been going and it makes me think, well how are our experiences going. How are you guys doing in terms of this? How is the pandemic changed your daily lives? Oaklee, what do you think?
Oaklee: Oh…not good. Gosh. I don’t know. I was thinking about this the other day. You know, March 1st I was going about my life. Everything was normal. I was visiting friends and getting coffee and then now what is it March 28 and we’ve been, I’ve been sheltering in place and I’m not really sure what tomorrow holds and so I feel like March has given me whiplash. It was completely out of the blue. It wasn’t out of the blue in a way but very unexpected. The things that have been happening could even happen. Businesses are closed. I can’t see my doctor. I can’t see my therapist. There is so many different services that are shut down right now and so for me as someone who struggles with C-PTSD that’s, that uncertainty can be very triggering and very upsetting. I do have my service dog with me and that has been my lifeline. She’s been incredible in keeping me calm and keeping things under control but I’m not really sure what I would have done if I didn’t have her.
Chris: I think for us it was…I think for us, too, my family with my wife and my 11 year old son it was also… It did seem like out of the blue to be honest with you because I think that we are guilty at least in our family of having a sort of American attitude of like, “Things just keep going”. No matter what happens, things keep moving. I think when school got canceled we were both like, “Okay, now something’s going on.” And, of course, before then Jill and I had a major event canceled which was a performance at South by Southwest with the drag troupe, Drag Syndrome from the UK. So for us professionally it was like a shock and so in some ways I…I don’t know about you, Jill….I felt like I was still in a little bit of shock that we were missing this huge cultural event and then by the time that had ended or when that time when it would have happened ended we were stuck in the middle of this thing. So, I think for us it’s been like for most people it’s finding, it’s finding a rhythm, it’s finding a new rhythm. I feel personally like you know that feeling you get when you think something is going to happen but you don’t know what it is and you just sort of feel on edge? I feel like I’ve been there for about 3 weeks where I’ve just been sort of like, “Okay”. Like I’m not able to rest. I feel like I’m having a hard time resting.
Jill: I have a lot of mixed feelings and I think they change daily. But when you mentioned the Drag Syndrome performance, the collaboration that we didn’t do it makes me realize that we’ve been talking about the realities of this virus for weeks before my family chose to shelter in place. So we had decided actually in collaboration and in communication with Drag Syndrome to not go to Austin, Texas for the performance before South by Southwest had canceled and primarily because we were traveling with people who are Disabled who have potentially underlying health conditions. And, what do we do? I mean, what is the value of a life? And we felt the value of our lives and the chance, the risk, was too high for the benefit to our organization professionally. I think because we had gone through that process and many many conversations… So even after Drag Syndrome for sure was not going to go and South by Southwest was still a possibility, Chris and I were talking about should we go personally for professional reasons and even then we decided “no”. This is before shelter in place orders were even talked about in the US because we were seeing what was coming across as a wave from other parts of the world. By the time, for me personally, I think that time gave me time to process longer than maybe someone else that I know or in my own family. So by the time the schools closed, I had already gone through those pros and cons process of what is the risk, what is the potential, what is my role as a person in our community to stay at home? What is the role of my family? I have three kids and a husband. What is our role to stay at home because we know that any of us can be carriers out in the community and so we had these tough conversations with our kids early on that said, “Hey look, what would you do if you were parents knowing that we could be carriers? Knowing that we don’t know what’s coming, but we could play a role by doing our part which is staying in our house even though our friends are going out.”
Oaklee: I’ve gotten a lot of messages from people who said that this specific post really resonated with them or that it helped them because they’d been feeling this for awhile but couldn’t put it into words. And so being able to scroll through that archive on Instagram and see there’s five other people who are experiencing this same anxieties and uncertainties that I am also feeling. I think that really helps.
Chris: what I’m hoping for is that this moment in our history which is really an important one, I think, in the US and really global history that Disabled people might for the first time come out as leaders rather than evidence or data or numbers or the sort of haphazard downfall of a society and I think that we’re hopeful that that can happen.
Thanks for listening, be well, keep your distance, send us your comments, questions, and your 280 character submissions to email@example.com, and make sure to follow the My Dearest Friends Project on Instagram and at DisArtNow.org. Thanks again to the Ford Foundation for their support of this work.