Pigeonhole Episode 51
[bright ambient music]

Introduction

CHORUS OF VOICES: Pigeonholed, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole.

CHERYL NARRATING: Wow, I kind of feel a little This American Life vibe today. Ready for it? [clears throat, switches to bland voice] Today: Art Imitates Sick Imitates Life Part 2. [back to regular voice] That’s it. I don’t think anything else that will happen in this episode will remind anyone of This American Life the show. But certainly, the slices of life we talk about here will be very familiar to some people. When I listened to my guests, actress Jenn Covington and filmmaker Aaron Abolt, talking about themselves in our interview a few months ago, I kept thinking, “Oh, yes. This. This is my life.”

Check out Art Imitates Sick Imitates Life Part 1 for a little on how I came to talk to this amazing duo about their amazing film Existing Patient. This episode is dedicated to anyone who checks out their stories and feels like they could be telling a part of your story as well.

[cute, twinkly ringtone]

JENN: Hello!

CHERYL: Hello, hello, hello, hello! [delighted giggle]

JENN: I love your glasses!

CHERYL: Thank these are my computer trifocals.

JENN: I love them. They are super cute.

CHERYL: I started a new thing last year of not hiding. So I have for years had my hair like this and…black glasses to hide.

JENN: Yeah!

CHERYL: And then I was like what if…I don’t?! [laughs] So.

JENN: Exactly. Just let it be!

Hiding

CHERYL: Have you ever felt that, like, how can I make myself hide?

JENN: Oh yeah. I mean, and I think that’s why I wore wigs for so long is because when I don’t have a wig on, I get lots of looks. Especially here, I think, in Texas, it’s just different looks maybe aren’t as common or as accepted. So, I get a lot of long stares, a lot of confused looks, a lot of questions. So, for a long time I wore wigs even though it was 1,000 degrees here, and it really took COVID for me to get comfortable enough to be like, you know what? Let’s put things into perspective. What really matters?

AARON: For me, I think the first thing that comes to mind with hiding is when I’ve been on set as a technician, a lot of times I’ve been the second camera assistant, which means you clap the slate, and then you have to skitter away like a ball boy in a tennis match. I’ve watched movies where I’m looking at the scenes, and I’m thinking, what little shelf or cabinet am I hiding behind? Where am I crouched in the corner here? Because I direct as well, there are things to maybe glean, or you want to watch the actor’s performance. But I think the polite thing you’re supposed to be doing is kind of hiding your face and certainly not making eye contact with the actors while they’re doing their thing, so.

CHERYL: Jen, was Aaron hiding when y’all made your film?

JENN: Yeah! You were not in my eyesight.

[chill, lo-fi music break]

Chronic illness and safety

CHERYL: Jenn, you played a character in this film who I think you have some commonalities with, right? Chronic illness.

JENN: Mm-hmm.

CHERYL: And you have the wig on at the beginning, but then also, there’s all these shots of the wig on the stand. I’m just curious, just listening to Aaron talk about sightlines and hiding and the filmmaking process, but also, the whole layer of this film unhiding this very private story of what we go through when we call insurance and get our medication denied.

JENN: One of the hardest things for me was those moments where we were filming without a wig because even though I live my life bald now, I mean, it took me a long time to get here, and most of my acting gigs are done with a wig. Almost every audition call I get is for me with a wig. So, this was really my first time to be in front of a camera without a wig on, and it felt very vulnerable and very intimate for me. I’m very lucky because Aaron created such a safe, loving, accepting environment, and everybody was so incredibly supportive and encouraging.

CHERYL: And how did you do that, Aaron? How did you create that safe space?

AARON: I think working as an independent filmmaker, to me, the most valuable thing with this story that I felt like we could put on screen was the performance. And that was a lot of what I wanted to get out of it was doing something with Jenn where we got to sort of dig in, and there was movement in the character and really got to do character work in a short piece. We shot the movie end of 2022. And I think these things are all still concerns, but we were still thinking about COVID protocols in a very real way. And it’s really gratifying to hear that from Jenn, to hear that you felt so comfortable. But it shows. And I get comments about other elements of the movie, but I do think that’s the biggest commonality, and it really makes me proud because it was a big goal. People love the performance, and they think you did great, which you did!

JENN: Thank you!

CHERYL: Okay. I have a follow-up question about safety. So, as a chronically ill, immunosuppressed person, if somebody told me wearing three masks worked better, I’d wear eight masks. So, because I audio described the film, I watched it five, six, eight times. Don’t remember how many times. And the scene when the nurse comes to demonstrate to you how to give yourself the medication injection at home, the nurse is not wearing a mask, and your character is wearing a mask. My stomach would sink every time I got to that scene. What was the choice to have that character not masked?

AARON: In a way, given how long post-production is, it was a little bit of a guess that these would be relevant dynamics by the time we were screening it. I wanted to play with the intimacy of someone coming into your home and the interplay between someone who is providing something that could maybe help you but is also on the payroll of the drug company, and that sort of customer service fakeness that comes with that. So I thought that that was another sort of dynamic that we could play with, in addition to the fact that we were concerned about safety in general, and even one mask is better than none. And that was the only scene where you were interacting with anyone in person.

JENN: Even this past week, there’s a measles outbreak here in Texas, and I have been really diligent about making sure I’m wearing masks when I go out into the world. And I had several doctor’s appointments, and I would literally be the only person in the waiting room and the only person period. Like, even the doctors and the other medical staff, they were not wearing masks. I did have one doctor say, “Would you prefer if I put a mask on?” And I said, “Yes, please. Let’s just be extra careful with everything that’s going on right now!” [chuckles]

CHERYL: Do you remember what it was like for your character to be in that scene with the nurse unmasked?

JENN: Yeah, I think it was twofold, right? Because I think on one hand, there was probably still this anxiety of oh no, I’ve got this possible exposure, but then she was so isolated. It was also like, well, here’s an opportunity for me to interact with somebody. She is somebody who spends the majority of her time alone. I mean, I think she does have friends, right, and she does have family, but she’s single, right? She doesn’t have a partner, and she works remotely. And I think especially when you become chronically ill and immune-compromised, there’s this heightened sense of, oh, I need to be really careful about who and where and when I choose to interact with other people because I’ve gotta think about, my safety and nobody else is probably thinking about my safety like I am, right? And so, I think when you do get these opportunities to interact with people, it feels very special. There was this little risk for her of having somebody come into her home unmasked. It was still like, oh, but here’s somebody who’s coming here specifically for me to help care for me, and talk to me, right?

CHERYL: And there was physical touch. She touched your leg! I’ve always been a homebody, but I have definitely become more isolated…

JENN: Same.

CHERYL: …since I’ve become immunosuppressed.

JENN: Yes! I’m a huge extrovert. I’m a huge people person. But since I started immunosuppressive meds, I’ve become much more isolated, more of a homebody. I have to do a cost/benefit analysis for anytime I wanna go out into the world or do something social!

AARON: Well, it seems, too, that if you are unlucky in your friendships to a degree, there’s also this wear and tear of, do they believe me when I say I can’t go out? Will we be able to maintain this relationship if I flake on something because it’s not a good day for me? Even maybe beyond the cost/benefit analysis, there might just be loss and just avenues that aren’t available to you.

JENN: Exactly. That is so true.

CHERYL: Yeah, spoken like somebody who knows!

AARON: A lot of the movie is based on my wife’s experiences. I feel adjacent to the community in ways, and I tried very hard to make this movie in a way that is authentic and honors it. And there are folks that I’ve kept in touch with that I’ve met through the festivals that we’ve played, and I appreciate the way that they’ve also broadened my perspective. And it’s been interesting to see recently, as I feel like we’re perhaps, unfortunately, backsliding into a more eugenic culture, to see folks raising those alarms. And I think I’d seen something from you, Jenn, like this 504 lawsuit that states are bringing. I don’t know. I mean, that seems to me it would fully crumble the foundations of special education in this country. But I don’t know, maybe that’s the point. Obviously, you’re a school psychologist, so it overlaps with that. But that’s a place where I’ve seen feedback from those folks that, it’s like, it’s nice to have community, but it’s sad when everyone in the community thinks things are really dire.

JENN: Yeah, and lack of access to medical care. I just got denied this week. It was, what is it, life imitating art? I was supposed to have a procedure done. A couple of days before, I get a letter in the mail that says, “You’re not approved.” And then my doctor’s office calls me and is like, “Sorry. We have to postpone and cancel this. We’ve already started the appeal process.” And so, they said it could be up to 30 days. It’s just, it is. It’s taking away access to care. I love how he wrote that line where she says, “It’s like having a part-time job,” having to juggle all of this and make all these calls and stay on the phone for hours. It really is.

CHERYL: I’m so sorry you got denied!

JENN: [laughs] I know. It’s the worst!
[chill, lo-fi music break with a heavy beat]

Organizing your life with chronic illness

AARON: And I mean, look at the way your day is organized. I think that that’s something that folks without chronic conditions don’t quite understand the experience of. That is something I really wanted to focus on, was trying to touch on something that maybe gets at the constant management that folks with chronic conditions have to do.

CHERYL: Something that always stood out to me from the very first time I watched it was your character’s name was just incredibly impossible for people to pronounce. Can you tell us Colleen’s name and what that was about with them not being able to say her last name right?

JENN: Yeah. Her name was Colleen Urias. It’s a Spanish last name. This is something we’ve all probably observed, right, and heard, is people butchering or just not even attempting to pronounce it the way it would be pronounced in the native language, right? When I first was reading through the script, it actually made me think about my mom because my mom is Mexican, and she goes by Veronica. But her actual real name is Zonia, not with an S, but with a Z. But growing up, people didn’t know how to really pronounce that. Zahnya? Zahnia, you know? So she went by Veronica. And she, to this day, goes by Veronica, but that’s actually her middle name. This is something that happens regularly, right?

CHERYL: And there is something to be said for just not being able to pronounce a name in a different language. I mean, you don’t have to completely copy the accent and get every sound right. Like, you can say it in your voice. People will know what it is, but their pronunciation was just off enough that it didn’t sound like they were really trying to copy how your character said her name.

JENN: Mm-hmm. For her, it was like, even though it’s a small thing, it’s just, again, like being misunderstood right? When somebody can’t even say your name right, it makes you feel a little bit more invisible, more misunderstood. So I think it just kind of added to that. It’s just one more little thing.

CHERYL: I’m curious about the wig on the head. It moved around. It was here. It was there. It was everywhere. Was that in this script, or did that come up in the shooting? Like, “Let’s put the wig in this shot.”

AARON: It’s not necessarily in the script, but we had talked a lot about incorporating that element of Jenn’s experience. Part of it, I think, is a little bit movie magic. It’s still up to interpretation. We don’t put a too fine of a point on it, but I think if you’re someone who’s had Jenn’s experiences, hopefully, it reads. Some people, I think, have read it as whatever her illness is gets worse, and then she loses her hair, which wasn’t necessarily the intention. And honestly, Cheryl, in the audio description—there were many instances of this, not just with the wigs—but you really helped get across some of the things that I was worried viewers would gloss over just watching it. So there’s a little bit of that magic of like, well, let’s put it in the background of this scene so people understand at first, she’s already got wigs, and it’s not something that occurs in the middle of the story. I think you had said, Jenn, that sometimes that is what it’s like. You’ve got them anywhere and everywhere sitting around the house?

JENN: Yes. There’s one in this closet right back here. [laughs] Yeah.

CHERYL: What’s her name?!

JENN: Her name is Veronica! That’s the one that I feel like looks most like my mom, and so I called it Veronica! [laughs]

CHERYL: Oh, my god. The first time I started watching through it to begin writing the audio description, I didn’t notice Veronica right away, but then I noticed her. I’m like, what an interesting place for a wig. Okay! So then I really started to notice her presence, and I thought, most people are not gonna notice her every time, or even some of, some people may never notice her there, but I noticed her there. And you have a relationship with her. Colleen has a relationship with this wig. And I feel she feels like a friend. She’s there in the room with you wherever you want her to be.

JENN: I used to have, oh my gosh, I don’t know, maybe five or six different wigs that I would kind of rotate through, and they would. They would be out and about just in my house. There was always one being washed and styled, and another one’s ready to go, and the one that I’m currently wearing. But as I became more comfortable not wearing wigs and going out into the world bald, they are now all in closets or in storage. I only keep one out, Veronica, and that’s the one that I use for my auditions and my acting stuff. Everything else is in storage now.

AARON: They weren’t cheap, I’m guessing, right?

JENN: No! They are not cheap, yeah. Insurance did not cover it. Surprise! [laughs]

AARON: Yeah, I’m sure.

CHERYL: Isn’t that interesting, too? Because, so, the wig is not medicine, right? You won’t die or become more sick without the wig, but the social consequences you were talking about of being stared at, of being questioned, people act confused in your presence. So, why is it not a medical expense? ‘Cause it is related to your experience with your illness.

JENN: You have to jump through all these hoops to even get it eligible to use an FSA or an HSA card for it. Your doctor has to write a letter, and then it has to go through an approval process, and there are no guarantees.

AARON: I think that’s something we really wanted to keep in mind and at the heart of the movie is, having a chronic condition would be exhausting in the best of circumstances, but just how many layers of crap can you throw on top of one person before they break?

JENN: Yeah. Yeah. And for so many people, I see online, people talking a lot about what it takes the average woman like 10 years to get diagnosed or something like that, to get properly diagnosed. I read stuff like that, and I’m like, well, yeah. I mean, that was my personal experience. It took me forever to finally get a diagnosis. Mm-hmm. I saw so many doctors. Was told it was my weight, was told that it was PCOS, and despite my family history. I mean, it wasn’t until I was in my late 30s and was having severe issues where I was at the emergency room constantly that I finally was in emergency surgery, and then they discovered I had Stage 4 deep infiltrative endometriosis. So, I mean, it’s just like [scoffs] so frustrating, right? And so many people go through this regularly.

[chill, lo-fi music break]

Impact of representation and the role of audio description

CHERYL: You must have been really affected by that film at Superfest, I Told You So?

JENN: I thought I was gonna have to get up and leave, I was crying so hard. I was sobbing. And I remember squeezing my husband’s hand because it really, really struck a chord with me. I really related to that film. It’s like, representation matters!

AARON: When you see folks who are just fully left out, so unrepresented, it was a really amazing experience to have folks come up to us after these screenings and just, they don’t know us. We’re strangers to them. They didn’t have to come up to us, but seemingly they were just moved by seeing something like their experience represented. And yeah, I mean that was really cool and I think did help remind me that that stuff is not just a platitude. It’s not just something corporations were doing before their current turn against quote-unquote “DEI.” That it is something that really matters and that affects people. And it was just the coolest thing.

JENN: That is one of the best things about this film is hearing from people directly, like people coming up to you, reaching out to you, and saying “Thank you. I see myself. I finally feel seen. I finally feel heard.” I mean, I know what that feels like, right? And it’s so special. So it just feels really good to know that there were a lot of people out there that it really resonated with.

CHERYL: I mean it’s the antidote to the gaslighting. “I see you. I’m going to tell my story. It’s very similar to yours, and it is worthy of being on the big screen for everybody to watch, and please discuss.”

JENN: Yeah.

AARON: It was so cool at Superfest. I think we got this more than at our other screenings. When the representative would say “prior authorization,” you’d get this like, [gasps]. People were basically snapping in the audience, or you’d get kind of like an, “I know that’s right.” I hate that people relate to it, but [scoffs].

JENN: I know. That’s the thing. It’s like on one hand you’re like ugh, I don’t like that people also have had these experiences. And at the same time, it does feel good to have that sense of community, right, and like, we all get it. We’ve all been there.

AARON: Cheryl, you also helped open the doors to what audio description can bring. And there were multiple blind folks in our audience at Superfest, and seeing that was really cool. And I think that that’s one of the things that made me so hopeful about where cinema can go. I think we have an opportunity to continue to increase who can be involved, who can experience these things. And with our experience, it really was something that felt like a creative opportunity kind of at a moment when I thought that part of the journey was done. We were kind of into post-production, release, producer, get people out to see stuff zone. It was really cool to sort of have one more opportunity to iterate on the ideas of the movie and expand it. And also cool ‘cause I didn’t really do that much work. You did it all. So, [laughs] it was cool to have that happen.

CHERYL: I was really fortunate. It was special request. So, Superfest jury. Y’all know. Film juries, it’s confidential, but I just felt like…I just felt…I just felt like I wanted to hold the film in my arms, cradle it like a little kitten, and just like, “I have to take care of this. I have to take care of this film. I have to be so soft with it.” But also like, there’s some “fuck yous” in the film, and so I’m gonna scream “fuck you” you when we get there! [laughs] So yeah.

AARON: The tonal balance in the movie is a little delicate. I think there are parts of it, sort of those “fuck yous,” or the stock footage stuff in my mind was a little arch, was supposed to be a little funny in its exaggerated grotesquery. And my parents were at the screening in San Francisco, and they had seen the movie before. My dad came up to me and basically said the audio description made it make sense to him. Gosh, after the documentary you had mentioned that we played after, which covered some similar things in terms of that journey of trying to get care and a diagnosis that is right and stuff like that, I think our movie playing after that, it was nice, probably nice for the audience, too, to be given permission a little bit to, in this one, you can laugh at the absurdity of it. There’s a little bit of gallows humor about it all.

CHERYL: If I remember correctly, people literally laughed as soon as I opened my mouth. “Welcome to Colleen’s World.” They were like, ah-ha-ha-ha! I’m like, wait, that wasn’t funny! What are people laughing at? But maybe they just needed a release. And how weird to have a black screen and, “Welcome!” So, I never understood that, but it made me laugh, too, that people were laughing. And I was like, y’all just wait! You think this is a fun ride? There’s not even anything on the screen yet! Oh my god.

AARON: There were times when I thought this is the definitive version. I think we’re kind of nearing the end of our festival run, so we’ll start thinking about online release and stuff before too long. And you sit in an editing room, and you get used to what the movie is for so long that it’s cool to see it be something slightly altered from that. But I think it also spoiled me for anything in the future because I get the sense that not every audio description is so dialed in to the aesthetics of a piece. I really thought what you did with some audio distortion and stuff like that was so cool, and it’s something I would strive for. I guess now, I would make the demand or try to punch it up myself if I got something back, and it was too dry or something like that. So, that was just a total, for a first experience with something like that, was really great. And I think that, I really do think stuff like that, or in my perfect world, there’d be, you know, the cinema would have a few open caption screenings a day or just anything that makes the experience more accessible to folks.

JENN: Doing this film and having this experience was a really great reminder to just continue to be my authentic self. And just like how you and I were talking about hiding when we started this conversation, just a reminder to myself that, I don’t have to hide. [chill, lo-fi music plays until the end] And when I don’t, and I’m just my authentic self, these really great, rich, beautiful experiences and opportunities present themselves. So, it was just a good reminder for me. Thank you for that reminder.

Wrap-up

[chill, lo-fi music fades into bright ambient music]

CHERYL: Every episode is transcribed. Links, guest info, and transcripts are all at WhoAmIToStopIt.com, my disability arts blog. I’m Cheryl, and…

TWO VOICES: this is Pigeonhole.

CHERYL: Pigeonhole: Don’t sit where society puts you.

Music in the episode

Music track: Kyoto by Another Kid & Pratzapp. Source: https://FreeToUse.com/music. Free No Copyright Music Download

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