Interview Date | April 7, 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 gentle piano music break]
SHAUN: My dearest friends, two weeks into this shit show of a quarantine, and I decide to take LSD because it’s been two weeks of laying in bed and wishing I could go home and thinking of nothing but being home and seeing nothing but the virus. The virus, its crown like visual snow. The reason for empty streets and people walking six feet away and looking down. Two tabs of acid later, and I’m walking down to my now-empty school, and all I’m thinking about is this virus and how we all knew this was coming. And all we did to stop it, really, was cross our fingers and hope it wasn’t as bad as it looked far away, its crown distorted beyond the horizon. Can’t stop thinking of my mom back home on her own and what kind of a son I am to be far away in Canada when she needs me in Malaysia now more than ever. I called her a few days ago, and she told me how she’s doing fine at home, that she has more than gotten used to living alone. But still, I see her fridge in the house I grew up in, the food slowly disappearing with every day. And I see my mom putting a mask on to go outside, a lone woman stronger than I can comprehend, fearlessly shopping for fruit.
My name is Shaun Phuah. I’ve been writing for a long time now. I went to school with Oaklee, actually, who is how I found about the project, back at Interlochen. But I’ve been doing writing for a long time. This virus has really just completely blindsided me for sure. And all of the things that have been normal have kind of been completely thrown out of whack. Yeah, especially like not being able to go home to see my mom this summer, which is a really important thing to me. So, yeah, I’ve been doing writing just to sort of, I don’t know, feel better in my own way. Just ’cause writing has always been that for me. It’s always been there as a space that I can move into when my current space is in such a weird spot where things feel so uncertain. So, I definitely appreciate being able to write that. It doesn’t always come out especially in a hard time, right? Like sometimes it’s like, oh, man. Just thinking about how all these other things are affecting you. But definitely being able to write that just made me feel like, oh, it was so nice to get all those thoughts out.
CHRIS: I think one of the things that I was moved by your observations that you sent in was the connection to your mom and how relationships are so manipulated and so altered at this moment—
SHAUN: Mmhmm.
CHRIS: And how deeply relationships changing, changes see us as individuals.
SHAUN: Yeah. Mmhmm.
CHRIS: And I wondered if you wouldn’t mind talking a little bit more about that.
SHAUN: Yeah, well things with my mom and with my relationship with home in Malaysia have always been complicated already. I feel bad for being so far away from her already. And I guess a part of me is always constantly looking forward to the summer when I know I’ll get to see her, and I know I can make up for that time that I don’t get with her normally. So, this virus was such like a moment of oh, wow. You know, we have all these plans for how we can interact with the people that we love, in this case, my mom who’s so important to me, but suddenly, these plans that I had in my head are so fragile in that way. And this virus really just made me realize that.
JILL: When I was reading it, I sensed a lot of homesickness.
SHAUN: Oh, yeah, absolutely. I definitely feel guilt about not being there for my mom ’cause it’s like…. This is the most that I can do at the moment is to just write out how I feel. But it is still a frustration of not being able to be like, oh, I wish I could just be home and interact with my mom, even. I feel like that would make things better but yeah.
CHRIS: So, what is home like for you now in Canada? Like what’s your reality looking like? How have the last couple of weeks been?
SHAUN: It’s definitely been difficult here. Most of the services have been shut down. I live kind of close to my university, and usually there’s a Trent express bus. My university is called Trent, and they have a bus that goes downtown every 10 minutes. And it’s a really fast system, but now all that has been killed. So, basically, it’s like a 40 minute time to wait for the bus, 40 minutes to go downtown, you know all that again to get back up. So, it’s really hard to get anywhere if I wanna get groceries or anything, but I still end up doing it. It’s just definitely very isolating and feeling like, oh, man. Yeah.
JILL: What is the reality coming from the government in terms of what is recommended that you can or can’t or shouldn’t do at this point?
SHAUN: Yeah, I think right now Canada, it’s sort of following the lead of most other countries. You know, we’re all just asked to stay at home and self-isolate as best as we can. I think the situation here is better so far. We’ve been lucky, especially in Peterborough, which is the city I’m in. Not that many cases yet. But I think so much of the uncertainty is in just not knowing what the next two weeks are gonna look like.
JILL: Yeah. So, what have you been paying most attention to in social media or the news? Or how are you managing that intake of information?
SHAUN: Definitely looking really closely at what the lockdown situation is. Just looking at sort of how the borders are doing. Like right now, it’s such a hard situation because even if I were to go home to Malaysia, I would have to quarantine in a tent, in a government tent for 14 days before I could do anything like go home even. And at this point, they’ve even said like, don’t come home. Just wait in the country that you’re in right now just because it’s such a difficult situation.
JILL: It’s hard to not talk about your mom. So, I wanna, I’m curious what her reaction is.
SHAUN: Yeah. I called her, and we had a long conversation. I mean, honestly, she’s such a strong woman. Our story is that my dad died when I was seven. So, we’ve been really there for each other since, you know, pretty much the longest time. And she’s so strong, so independent. And, you know, she’s so used to living alone. At this point, she really is that independent. And when I talk to her, she’s so, it’s not like she’s downplaying what’s happening. She obviously knows this is a serious situation. But she’s still very confident in what she’s doing. She’s cooking all day because she just really likes doing that. I definitely have a lot of confidence in her, but I worry about things like how she still has to go grocery shopping, and Malaysia is such a small country that it definitely makes me worried for her health.
CHRIS: You mentioned that she’s cooking. And where are you finding, if you are finding them—I don’t want to assume you are—but if you are finding joy moments, where are they?
SHAUN: Mmhmm. Well, definitely, I also share a love for cooking with my mom. So, I’ve been doing a lot of that as well. You know, kind of getting better at it. Learning to clean up as I go along, which is a hard lesson. Yeah. And also just writing and trying to put myself into it. And it can be so easy to fall into the headspace of like, aw, I’m so trapped here right now, and I’m trying my best not to do that.
[gentle piano music break]
JILL: So, I know that you don’t identify as being part of the disabled community, but would you be willing to talk about how your own experiences give you a different lens or perspective, or you have to do things differently? Or however you wanna take it, or you can choose not to.
SHAUN: Yeah. I have bipolar disorder, and that’s definitely been much more difficult in trying to manage. ‘Cause so, so much of, I feel like, trying to deal with bipolar symptoms is having a strong schedule: you know, waking up at a specific time, going to sleep at a specific time. And then also such a huge part of, for me, was going to classes so that I wouldn’t just be home all day, and I would be engaging with people and doing things in a consistent way. So, not having that is really hard for sure. And just having to deal with just being present in my moods, as an example. So, that’s definitely been more difficult. And trying to find things to latch on to schedule-wise has been important for me. Yeah.
JILL: Sounds like you’re trying to find stability within the uncertainty of it.
SHAUN: Mmhmm.
CHRIS: I noticed the acid reference in your stuff, and I think for a lot of us, I’m a pot smoker and a user, for a lot of different reasons. As a guy in a wheelchair, I’m curious about that.
SHAUN: Well, a lot of my writing in general engages with psychedelics. Right now, substances in general and specifically psychedelics and cannabis are kind of entering the space where they’re seen as not as dangerous as they were back in the late ’70s. And then even into 2000s, you know, people still look at these things are so scary and dangerous. But I’ve been really trying to work towards de-stigmatizing that. In my opinion, it’s definitely not even half as dangerous as what we imagine these things to be. And personally, I’ve found a lot of therapeutic benefit out of psychedelics, which I know is a controversial statement, especially as someone with bipolar disorder. But personally, I have found great relief. Not that I’m saying this as a recommendation or anything. The stigma put around, especially psychedelics, I don’t know, it keeps us back in specific ways when I think it could possibly help people if we just had more information. Yeah.
[gentle piano music break]
JILL: What are your hopes out of this experience in the pandemic, and what are you hoping for the future and for your future in particular?
SHAUN: I don’t know. I feel like politics have been so dark recently. I am kind of hoping that if anything good can come out of this, it’s that people start to really be much more engaged with what’s happening politically, especially. I don’t know. I feel like [laughing] Donald Trump has been so horrible. I feel like it’s obvious that it would have reached this point, seeing how he’s handled things since the very start. And I just hope that this begins a positive change in the really intense nationalistic politics we’ve been seeing.
JILL: There’s a lot of fear related to Donald Trump, and he provides a lot of uncertainty, at least in my mind, and not predictability.
SHAUN: Yeah. Mmhmm.
JILL: And so, how different would our country be if we had confidence as a whole? If there was a different leader in place, would it be the same, or would it be different?
SHAUN: Yeah.
JILL: I don’t know.
SHAUN: Yeah, hindsight is 20/20. A part of the good things that’ve been coming up are things like the universal basic income is kind of being implemented in some places as a result of COVID. So, I don’t know. Maybe there is a silver lining to things. That’s definitely what I, you know, seeing positive change with legislation like that. I don’t know. Maybe that can be the best thing that comes out of it.
CHRIS: Well, I was just gonna say that one of the good things that’s coming out of it is that the three of us are talking.
SHAUN: Yeah! True.
CHRIS: I mean, really. There is a part of a human need and a human connection that is happening now that I think is really exciting.
SHAUN: Mmhmm. Yeah, I think we’re fully realizing the importance of this communication. The sense of solidarity I have even with you guys right now, you know, seeing you guys through your rooms, it’s definitely palpable. Yeah. Yeah, I talked to my old high school teacher over Zoom recently, and that would never have happened if not for COVID. So, it was nice yeah, in that way.
JILL: And how is your school? How has your school responded?
SHAUN: The school was not ready for it. Canada is a little bit earlier. So, we basically only had about three weeks of school left when the quarantine started. So, there hasn’t really been a point to move to Zoom or anything because with just three weeks left. Most of my profs have given like the rest of the slides and said, just finish your final essays about two weeks later. [laughs] Yeah, I think most of them have been really understanding. And to a certain degree, it’s really hard to focus on writing or focus on school writing when all you’re thinking about is what’s happening outside.
JILL: Have any of them adjusted their assignments as a result?
SHAUN: Not really. I think most of them still have their assignments out, but I think they’re, in general, pretty open to talking to students. Yeah.
JILL: So, what’s the culture of the school typically, like size wise or relationships with professors and things like that?
SHAUN: It’s kind of, well, when it comes to the Humanities anyway, it’s a very intimate space where we can just come up and talk to the profs about most things, you know, especially in English. So, I definitely feel like I can just talk to them about what’s going on, and they’ll understand. And I definitely appreciate that. I don’t know what it is for the rest of the school. You know, we have sciences and a lot of other things like business. So, those classes are much larger, like 200+ students.
CHRIS: What’s your plan for the summer? Do you know what I mean? I know it’s a hard question, but it’s kind of the reason why I’m asking. Like, how do we plan? Yeah. What do we do?
SHAUN: Yeah, and I guess that is what’s so…. Usually, I have such a strong idea of what my summer is going to look like. And now, when I think about the month of July, I just have this black space in my head of what that month is supposed to look like just ’cause everything is so uncertain. But I’m definitely looking forward to the nature coming back with spring and the warmth coming in. It’ll definitely feel a lot better to not be cooped up at home the entire time and to go on a hike or something instead. I’m looking forward to that really, really strongly, actually. I think anything that can distract me from the fact that I’m stuck at home will be good. Yeah.
JILL: I’m with you on that.
SHAUN: Yeah. [chuckling]
JILL: Yeah.
[gentle piano music break]
SHAUN: I guess internationally, this is such a new thing in the sense of this is no longer just like an issue in China or an issue in America or an issue somewhere in Germany. It really is like every one of us is dealing with this. And that’s been so amazing and scary to me at the same time. Like the fact that it’s not just me now, that it’s like, oh, I can’t do these things. It’s literally everybody on the planet that suddenly has had all of our plans completely taken off. And so, I think that that’s just so powerful in really recognizing how we’re literally all in this together. And seeing the art that people put out outside has been amazing. Yeah.
JILL: I was really interested in that, what did I say, the Muse Madness.
SHAUN: [chuckles] Yeah, Madness Muse Press. Madness Muse Press was interesting. I got published into their first issue, and that was an issue that was dealing with addiction mainly. And so, it was just sort of writing about and being honest about addiction. Not that I have personally dealt with addiction, but it was sort of a piece that I know a lot of people in my life who have dealt with addiction and who’ve had to deal with that stigma of addiction. And so, I’m really trying to work, through writing, to destigmatize addiction. And also too, I feel like drugs and substances kind of carry the same weight that sex does in the sense that if you don’t talk about it, and if we don’t educate people about it, the less we know creates more harm. That was really that project.
JILL: Yeah, it looks like there’s a few fascinating projects as part of that press, so.
SHAUN: Mmhmm. Yeah.
CHRIS: Well, Sean, thank you so much for talking about your life, and we hope you’re well dude, and you know, reach out again.
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: “Lilac” by Chad Crouch. (Source: freemusicarchive.org. Licensed under a Attribution-NonCommercial 3.0 International License.)