Episode 50: Patricia Kalidonis (click for transcript)
Interview Date | May 1, 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 ambient music through the next few sentences]
PATRICIA: My Dearest Friends, in many ways, my life is easier now. Working from home has been a respite from the sensory and social overload with which I struggle in a normal daily life. I’m actually a little afraid of the shock to the system upon returning to the cacophonous world when life starts up again, Trish.
My name is Patricia Kalidonis. I’m a visual artist based in Brooklyn, New York. I make primarily oil paintings, although recently, I’ve been making a lot of mixed media stuff. And I’m the founder and I guess director of Socially Distant Art, which is an artist’s residency program I just started in this past March, which is all based on online and video conferencing, I guess, meetings with a cohort of artists who are making work about loneliness and social connections or disconnection, solitude just in our culture over all, but also during the pandemic.
JILL: How did you come to the point where you started this project?
PATRICIA: Well, I’d been looking for residency opportunities. I just graduated from my undergrad. I got my BFA at Portland State University just last July at the age of 34. [laughs] I’d kind of given up on that happening. So, feels kind of like a big achievement for me to get that done! But, and then I moved to New York almost immediately and lost my studio space. And I’m in a very small one-bedroom apartment with my partner. So, I was trying to figure out what was next for me and looking for a lot of residency programs that I might be able to do. But I felt like I was running into a lot of barriers because, one, I don’t really have the financial means to take time off of work, to go spend six months or three months at a residency program. And also, a lot of them have shared living spaces, which for me, is just really stressful. I was running into a lot of issues getting accepted into residencies. A lot of times they only accept people who have MFAs. So, that’s another barrier.
And so, I started working remotely in early March, and I suddenly felt like I had a whole bunch of energy in the evenings because I wasn’t commuting and exhausting myself. So, it started feeling like I had the opportunity to do just my own residency during this period in my home. And it just occurred to me that, well, there must be other people out there that are searching for that opportunity. And maybe we can use the time to explore some of these themes that I’ve been interested in personally for a long time. But I think that a lotta people are feeling those things more acutely now because of the situation that we’re in as a whole. So, I just put a call out, and I got an overwhelming number of people who were interested. I was really surprised.
CHRIS: How many folks are working with you now?
PATRICIA: I think there’s 32 other people. I’ve had to, unfortunately, turn some people away because I’m still working full-time from home and trying to do my own artwork along with this project. So, I had to kind of cap it at some point and be like, well, I don’t wanna stretch myself too thin or stretch the program thin as well.
JILL: How did you select the people who were involved? It seems like you have some really high-quality, very talented artists included in this project.
PATRICIA: Yeah. Well, I really wanted to make it an inclusive program and make sure that I was paying attention to those barriers that I was running into and making sure that I also wasn’t putting up those barriers. So, I tried to keep it open as possible. So, undergrad students were welcome. People who were single mothers and just returning to school were welcome. Obviously, I have kind of, I pay close attention to the disabled community, so I wanted to make sure that they were included. I think often, the disabled community gets overlooked when it comes to diversity and inclusion initiatives. And I just tried to make sure that we had a lotta different voices from the LGBTQ community, people of color. I wanted to make sure that everyone was feeling included. I didn’t start even turning people away until, I think, maybe three weeks ago. I was just kind of like, yeah, let’s do it. Anyone that emailed me, I was like, that’s great. I think I got a lot of people from various marginalized communities reaching out to me because in my call, I was so open about my own disability. I think it made other disabled people feel welcome as well as other people from different marginalized identities feel like they could also be a part of the program.
JILL: This definitely sounds like a program that can last beyond COVID-19.
PATRICIA: That’s my goal! I’m starting to kind of formulate some bigger goals for it. Yesterday, I started looking into how to form a 501(c)(3) ‘cause I would love to have different cohorts every year. It seems like it’s really filling a gap in the artist residency programs that I didn’t even realize at first was there, so.
CHRIS: It does fill a gap too in our, and I love what you said about really wanting to reach out to multiple groups. Because I think it’s really interesting to think about creativity in groups that’ve often been marginalized from creative action within this society.
CHRIS: And so, for all of you to be working together, right, I’m sure you’re hopeful that there are gonna be some pretty important conclusions or findings. Or not findings. We’re not researchers. We’re artists. But and like things, right?
CHRIS: I don’t know how else to say it. But is that your hope?
PATRICIA: Yeah, I hope so. I always feel like there’s a lot of universality in very specific stories, which is why I feel very comfortable in my artwork talking about my very specific experiences. It’s always surprising how much people will see versions of themselves or aspects of themselves within something that’s very specific to another person’s experience, even if it doesn’t align perfectly. And I think that with a diverse community, even if our hardships or, yeah, even if they’re different, that we can find commonality there. And so, I’m hoping that I will see some of that as well.
I think it’s really important when you’re looking at diversity and inclusion for communities to have things that are by them and for them. But also, I think we need to find ways to integrate everyone together. And I think that’s especially important for people that have intersectional identities, for them to have to like parcel off one piece of themselves when that’s not really something that you can just easily separate I think sometimes is not as helpful as we want it to be.
[ambient music break]
JILL: Yeah. We’ve been talking a lot and thinking about intersectionality, and I really appreciate that you are showing a model of how to make it work. You are thinking about who you want to participate from the very beginning. Like in every bit of it, it sounds very intentional, even in your own communication, in your own willingness to be open, and for some people, might consider it vulnerable. I don’t know if you consider it vulnerable or empowering when you claim your identity, but you put out this invitation that said, “Come.” And that seems to be what most people are saying. You have to think, whether it’s access of any kind, you have to think about it from the beginning. I just love hearing you talk about that intentionality because some people think it just happens, and it doesn’t.
PATRICIA: Yeah. And I’m hoping to expand upon that. I think this is also been a really collaborative project. You know, I started out not knowing really what it was. And people have been, in the cohort, have been offering up ideas, which I’ve been able to implement or morph a little bit and implement a version of it. And it’s also been really revealing in the ways that I can expand accessibility for people. The more perspectives we have, I think, the more accessibility we can create.
I tend to be more comfortable with written communication, and I write a lot of long-winded emails. [laughs] And then I forget sometimes, well, not everyone communicates that way. Like, some people see really long emails, and that’s too much, or they prefer to communicate verbally. That was something that someone in the cohort reminded me just a couple nights ago. And I’ve started kind of redoing the way that I’m sending out weekly updates in a way that I think will hopefully be more helpful to people that don’t really do so well with emails, especially really dense ones. So, I mean, those are the things that it’s easy as an individual to forget about, and the more perspectives you have, the more reminders you get to create those versions of accessibility for people.
JILL: And you’ve also created the culture where that’s OK, where you are inviting feedback, and you don’t take it as critical; you take it as a learning moment. I’m curious how you’ve adjusted your emails.
PATRICIA: Well, [laughs] I decided to just make them like just a few sentences long for each kind of subject that I wanna touch on. And then I’m going to add like a little “read more” link that will link on to an aspect of our website that people can read the more dense version of it if they want to. I’m gonna add some images in there ‘cause, I mean, I’m an image-based thinker, so I don’t know why that didn’t occur to me. I think [laughs] a lot of times, images can just serve as cues for people. So, those are the first things that I’m sort of thinking of, and I have to experiment with it a little bit. Yeah.
JILL: But that’s part of the process. We say access is a process.
JILL: And the efforts such you’re making will invite more and just continue to build and get to the place that works for this cohort. The next cohort might be a little different.
PATRICIA: Yeah, exactly.
PATRICIA: That’s sort of why I like the collaborative aspect of it, because I feel like if I can continue this past the pandemic, each cohort will be able to contribute something that will make it better for the one following it. That’s the goal, hopefully. [chuckles]
[ambient music break]
CHRIS: So, the work that you do, you do photography, painting, and then mixed media as well.
CHRIS: And you’ve said of your work that it is exploring the dichotomy between loneliness and solitude, two very different emotions, but also interconnected in some way, right? [a little dog barks]
CHRIS: Can you tell us a little bit more about that?
PATRICIA: Yeah, I think a lot of times, people use those as interchangeable terms, but I think of them as very different. I read a book recently all about loneliness and how people, undoubtedly, we’re wired to need social connections. But people have different thresholds for loneliness. So, some people need a lot of social connections to feel fulfilled, and some people only need a few of them. I’m pretty comfortable with solitude. I’m comfortable spending a lotta time alone. I have a pretty small social group, and that feels fine to me. But I still experience loneliness when I can’t access those social connections. So, I don’t have generic loneliness for say, where I just desire to be with people in general. I miss specific people. I’m very interested in how people experience those emotions differently.
JILL: Do you remember the name of the book?
PATRICIA: It’s just called Loneliness.
JILL: Oh, OK.
PATRICIA: I don’t remember the author’s name.
CHRIS: We’re in an interesting part of our human history in which solitude is being pushed against. But also, I’m trying to think of a way to talk about the fact that some of us are more alone now because we are quarantining, right, or we are keeping our distance from folks while some of us are being forced into positions of not having solitude.
CHRIS: And so, this idea of loneliness or isolation or solitude or privacy, even. I mean, privacy sorta comes up too in that, I think.
CHRIS: We’re in a really interesting time. And I’m curious about how that’s coming out in your most recent work with the multimedia impressions of COVID life.
PATRICIA: I started, right before the pandemic, doing some mixed media stuff that was like photo transfers of photos that I had taken around New York City with some acrylic paint and markers on top of it. Originally, I was thinking about my own sensory experiences while trying to navigate the city. I personally feel more lonely sometimes in a very crowded space. And I know some people that live in big urban areas also express that feeling. And then during the pandemic, I started doing I was calling them Zoom portraits because I was really interested in this new form of communication that we’ve been doing where we’re only seeing like this tiny portion of ourselves from the shoulders upward. And sometimes you get these odd glimpses into people’s lives ‘cause you get to see like a little bit of the room that they’re in. There’s little glimpses of people, parts of them, but not the whole. And so, I became really interested in that way of communicating.
It started really intriguing me because I have a lot of Zoom meetings for my job. And there was one person who, he always sits in the same room, but he sits in a different spot in the room. And I felt like every meeting, I was starting to kind of be able to piece together the layout of his living room just by these little shots I could get per week. That was kind of intriguing too. Like little bits of someone’s life that you see. Chris, I think it just goes back to what you’re talking about, privacy, too: you’re losing a little bit of privacy with the Zoom calls, but you’re also…. It’s like the other person doesn’t get really enough information exactly to do much with it at the same time.
CHRIS: And I think too, it helps me to think about things like limitation and how a limitation can be negative, obviously, but how limitation can also be a positive thing.
CHRIS: That it can guide a sort of life mode, right, in which especially in communication, it forces different things to happen, right? You’ve heard this, I’m sure, from friends, and you’ve probably heard it on the news and whatever. But so many people are connecting with people they haven’t seen in long, long times. And not just connecting, not like Facebook or Instagram. I’m talking I’m seeing you in video, and we’re talking for like 20 minutes.
CHRIS: And I think that I’m always very interested in how limitation, I mean, obviously, creates a sort of possibility in a weird way.
PATRICIA: Yeah. I’ve been developing friendships during the past couple months, not only with this new network of artists that I’m working with that are mostly brand new people in my life. But the majority of my friendships are based through my partner. They’re mainly his friends, and they go out to bars and hang out. And I kind of know them, but I don’t go to bars because there, it’s too much sensory overload for me. So, but now we’ve been having Zoom calls like once or twice a week, and I suddenly feel like I have, like they’re also my friends now. Makes me a little worried for when things kind of go back to the way that they were before, and everyone starts going to bars again. But I’m hopeful that this sort of communication will stay around, at least in some form—maybe it won’t be as ubiquitous—so that people that can’t or struggle with going out to those public places can still develop social connections.
JILL: Well, and as you get to know people, maybe you figure out other common interests and other ways to spend time that aren’t in a bar.
PATRICIA: Mmhmm. Yeah, absolutely. I feel like once I get to know people well, they’re often very willing and happy to hang out with me one-on-one in more quiet spaces. But that can take a while, so.
[ambient music break]
JILL: You’ve been in New York. I mean, there’s a lot of attention on New York. I’d love to hear your perspective.
PATRICIA: Yeah, it’s a pretty stressful place here right now. I feel like when I talk to my family or friends that are in different places, they don’t really have the full idea of the way things feel right now. I’ve only been in New York since last June. A lot of New Yorkers are saying that the energy here and the connection that people are feeling to the city is very similar to 9/11. I wasn’t here during 9/11, so I can’t necessarily speak to that. But there is a feeling of going through something together that the rest of the country is experiencing it, but maybe not on that same intensity. My mom lives in New Mexico in Albuquerque, and I was just talking to her last night. And it didn’t seem like her life was hugely disrupted. I mean, obviously, things are still canceled and shut down there just as they are anywhere else. But I don’t think that the level of anxiety is quite the same.
I don’t have a car. Like most of the other New Yorkers don’t have cars. So, you know, you’re limited to where you can walk, basically. Which means going to the grocery stores can be challenging if you’re living in a food desert. I have a lot of essential workers that live in my neighborhood. And so, that means the streets are actually a little busier than one might expect. So, going out for just walks and stuff is a little bit nerve racking, I guess.
My partner got a job out here. He actually got a job out here last December of 2018. And we talked about it, and we thought it was the right thing to do. So, he moved out here six months before I’d finished my degree, and then I came out when I was done with my degree. I mean, I’ve lived in urban areas before. I lived in Chicago and Toronto both for a couple years. Those experiences were largely good. But New York, it just seems like I guess I wasn’t fully prepared. I thought I was like, it’s fine! I’ve lived in an urban area. I’ve got this. I’ve got my noise canceling headphones. Everything’s fine. But there’s a special rhythm to it that I’m still trying to get into.
CHRIS: Where do you feel people’s anxiety? You know how you said that anxiety level is high there? How does that make itself known to you?
PATRICIA: Well, definitely reading The New York Times. [chuckles] Anytime I’ve gone out, which is not very frequent at this point, you can feel it on the streets. Everyone is like watching each other. They’re watching each other to make sure that you’re doing the right things. Anytime you have to walk by someone on the sidewalk, everyone kinda tenses up. You know, you have to stand outside stores to wait in line, and everyone’s spaced apart, but there’s also a lot of pedestrians on the streets. So, people are passing you pretty closely. And there’s just sort of a sense of tension and anxiety amongst everyone when you’re trying to thoughtfully navigate around the city, but you’re still living in very close quarters. So, in many ways, when you’re trying very hard to socially distance, you just can’t sometimes. And that’s very stressful. I feel very lucky that I have a job I can work remotely, and I have a safe place to live.
JILL: Yeah. What are you interested in talking about that we haven’t talked about yet? What would you want people to know?
PATRICIA: I guess I’m sort of surprised how, during this experience, there’s been a lot of things that’ve been created to make cultural institutions or working from home, all of those things very accessible to people. I wish that that had existed before. I feel like there was a lot of pushback, people saying like, “Oh, we can’t do that,” for various reasons. And clearly, they can when they’re put under pressure to do it. So, I hope that those things continue.
There can be some barriers to like going to museums for people, not just disabled people, but, you know, if you live outside of the city and you don’t have a lot of money to get on the subway. Or if you’re a working parent, it’s hard to bring your kids to the museum. All of those things can keep people from going to a lot of cultural institutions. And so, I hope that some of this online-based accessibility will somehow continue. I know that that’s a little challenging ‘cause a lot of organizations and museums just, they don’t have the resources. So, they were taking their existing resources and reallocating them. But I’m just hopeful that they’ll find a way.
JILL: But maybe, just like your project, people will think about it from the beginning, and when they’re writing their grant proposals, it will be part of the consideration. And maybe there’ll be a shift. I mean, we can only hope.
PATRICIA: I hope so.
JILL: For your own work. It sounds like from your submission that you’re appreciating what you call a respite. I’m curious.
PATRICIA: Yeah, I feel guilty about that. But I’m [laughs]—
JILL: Why? Why do you feel guilty?
PATRICIA: Because the world is in chaos right now, and a lotta people are struggling. You know, there are a lotta people in the disabled community that are afraid for their well-being, and they don’t have access to their caregivers or assistants. And here I am at home, feeling good for the first time in a long time. And so, that’s, I just feel very conflicted about that.
CHRIS: It’s complex. That’s the issue. And I understand the guilt. Totally understand the guilt. But I also wish that we had a climate, maybe hopefully, we can keep working towards it, but a climate in which you could say that this is good.
CHRIS: And people would say not, “Well, you’re a jerk for feeling,” like it’s great.
PATRICIA: [laughs gently]
CHRIS: But that people could just be like, “Yeah.”
CHRIS: “OK, good. Thank you for teaching us that.”
CHRIS: You know, because it’s a testament to our community, the disabled community, to be able to look at all the different experiences of reality and be able to learn from each other, in terms of how we’re relating and how we’re getting through crisis, right?
PATRICIA: Yeah, absolutely.
[ambient music break]
CHRIS: So, we usually talk to people about like where are you finding your moments of joy?
CHRIS: But what’s interesting is we’ve been talking about your moments of joy for the whole, I mean, really, are you finding, I mean, besides the solitude, which is also joyful for you, where else are you finding joy?
PATRICIA: Hmm! Well, I guess this project has been really a wonderful experience so far. Been able to connect with people that I would’ve never connected with before. I don’t tend to develop social relationships easily, and yet I found myself in a cohort of people that I think are OK with some of the things that I have a hard time with. And everyone is willing to meet each other in the middle. We started these group discussions where we meet on Google Hangouts a few times a week. And when I started organizing them, I sent an email out to the cohort saying, “I’m really bad at leading a discussion, so who wants to do that?” And a ton of people were up to it. And so, everyone has come with their own topic to talk about and driven the conversation. And it’s given me an opportunity, I think, to participate in the program as an equal with the rest of the cohort instead of just strictly the driving force behind the project, which I’ve been really appreciative of.
JILL: I just can’t help but wonder if you’re able to tackle more because of your current situation and being at home, that you have more energy. And then when you put it out there and it’s this collective, that the pressure’s not on you to lead it. It sounds freeing in some ways.
JILL: And I’m curious, would how likely would you have been able to do your full-time job and this project?
PATRICIA: Oh, I would’ve never been able to do it before. I mean, I would come home with no energy. I mean, in addition to being on the autism spectrum, I have fibromyalgia. And so, I come home, and I am mentally exhausted from dealing with all of the sensory stuff, but also just physically in pain most of the time. And so, I try to find times to make art, and sometimes that’s challenging. But I would’ve never had the energy to take on a project like this if I weren’t at home. But I’m trying to recognize, like, OK. This is my opportunity. There are other people out there that this isn’t the right situation for them, and they’re struggling. And so, how can I put this positive energy that I’m feeling towards making the situation better for other people? ‘Cause I feel like in many ways, I’m built for this. Not just because of the tendency towards solitude, but I’ve experienced a fair amount of trauma and hardship in my life before this. And it’s made me almost like I guess more, like stronger. I mean, I guess it’s a little bit of a cliché, but stronger to take on a situation like this, maybe. And so, I’m trying to think of it like, OK, I have this sort of positive energy right now that a lot of people don’t, so I’m gonna try to use that and put it out towards other people that need it right now, I guess. Yeah.
JILL: And you’ve had years where you haven’t had this energy because the systems around you aren’t built to support you!
JILL: So, what a great experiment in what you have to offer when you get your needs met in the way that you need, I mean in the way that works for you.
PATRICIA: Mmhmm. Yeah, absolutely. Kind of hope I can maybe part-time work from home after this is over. The institution I work for doesn’t have an excuse anymore. [laughs] They managed to set it up for all of their administrative staff and faculty, so I think that they can’t say that they can’t do it anymore.
CHRIS: That’s awesome.
CHRIS: I that that’s really great. I’m so excited that we had a chance to talk to you because I think you’re offering such an alternative understanding of what we’re all going through right now. It’s great.
JILL: I think that your lived experience has made it even more tangible about the value of creativity, adaptability, flexibility, creating a culture.
CHRIS: The other thing I really like is that I think we’ve interviewed other people that probably feel like you do.
CHRIS: Like they’ve taken some comfort in what’s happening. And I don’t think others have had the courage to say it.
PATRICIA: It’s a scary thing to say.
CHRIS: It is a scary thing to say.
PATRICIA: Autistic people are known for just saying whatever’s on their mind, so. [laughs] In this case, it’s a good and bad thing, I guess. Definitely, it’s got me into some trouble. Although I will admit that it’s possible it’s frustrated and annoyed people, but I didn’t even pick up on it. [laughs]
JILL: Yeah, but there’s no time for guilt.
PATRICIA: Sure. [laughs]
JILL: There’s time for that’s what we talk about in our families and with each other is like, yes, we appreciate where we are. How can we make our world better?
JILL: Right? And that’s exactly what you’re doing with the energy that you now have, is you are contributing to the world and the lives of so many people. They got overlooked!
JILL: And that’s a gift that you’ve been giving. [ambient music plays through the next few sentences]
PATRICIA: Well, thank you.
CHRIS: So cool. Well, it’s good to meet you, Trish.
PATRICIA: Thank you so much. This was wonderful.
JILL: Yeah, thank you.
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: “Truth is a Lonely Place[disquiet0138]” by Westy Reflector. (Source: FreeMusicArchive.org. Licensed under a Attribution-Noncommercial-Share Alike 3.0 United States License.)