MoCP Final

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"Right," she says. "Well, I'm Grace Park. I'm twenty-one years old. I'm a student here in the city, studying art and art history." "What kind of art?" you ask. "Traditional mostly. I like a lot of things, but my favorites are oils and pastels. I like, uh, portraits, especially of people who aren't like, super traditionally attractive." "And art history?" "Yeah, I've been thinking it would be cool to work in restoration? Like, cleaning and fixing up old paintings that've been damaged. Again, I really love portraits, especially Renaissance ones, you know, but I've been really interested in Flemish still-lifes recently, too." "Great. Grace, can you tell me a bit about why you're here?" "What do you mean?" [["Can you just give me the bullet points of how you came to be here today?"]]

"Oh," she says. "Okay. "Well, I was leaving one of my classes. The elevator in that building takes a really long time but I didn't wanna take the stairs, so I just stood and waited. There are these bulletin boards where people put up posters for events and stuff, so I was looking at those. And there was one talking about how they were looking for disabled people to interview for a project. So I took a picture of the contact info. So, uh, here I am." "What made you interested in the opportunity in the first place?" "Uh, to be honest I wasn't sure at first if I was what you were looking for. Because I'm not, you know, visibly disabled, and a lot of people think that if you're anything short of, like, missing a limb then you're not really disabled, which is bullshit. But I sorta figured that if I did happen to be what you were looking for, then I'd be able to help and contribute, and since this is sort of a big project that'll get seen I can help to sort of demystify stuff, or show that we're not all stereotypes, or something." "Okay, thank you. [[Now, do you think you can describe your disability?]]"

"Yeah. So, I don't know if it like, 'counts' as a disability, but I'm immunosuppressed, which means that my immune system is weak, basically, except that it's on purpose because I had to have a kidney transplant, um," she appears to do some math in her head, "seven years ago." "Why might that not count as a disability?" "Well, that's kind of a complicated question, isn't it? Because how do you really define something like disability? Like, it generally doesn't get in the way of my doing my daily stuff, which is how a lot of people define it, but it definitely did for a really long time, and I don't think that just because I'm mostly 'fixed' that means that I don't have to deal with the fallout anymore, or that I don't get to be a part of disabled spaces, or even that I'm able-bodied." "So even though you might not necessarily be disabled anymore you still identify that way?" "That's not it. It's more like I'm just less disabled than I was as a kid. I still have physical complications that able-bodied people don't, and I still get treated differently. In a lot of ways I am disabled, and that's never gonna go away. It's just that my abilities have increased a lot from where they were, and that sort of muddies the waters." [["So, tell me about your diagnosis."]]

Grace scratches at her neck. "Um, I got diagnosed when I was just a kid. It was second grade, so I was seven, I guess. It was totally under control for a long time, like years; I knew that I was sick and that I'd need a new kidney eventually, but I thought it was a decade or two away. It wasn't a problem for me because I was just a kid, and getting blood tests every other week and taking pills isn't a problem for a kid, it's just a thing you do. "But maybe four years later something happened. I had always gone to summer camp, just like a week in August with other kids, nothing special. Except some kid had chicken pox." She closes her eyes and shakes her head, frustrated. "He broke out the day he got home, and his parents called the camp freaking out. See, chicken pox is contagious for a long time before you ever know you have it, so everyone at camp had been exposed without knowing it. The camp sent emails to everyone so we were all on alert about it. We thought we were in the clear when I broke out two weeks later. "I got real sick with it, but you know, it's chicken pox, it happens. My doctors were worried, but I got over it. The thing was, after that everything went downhill. My bloodwork was being erratic, and I kept getting sick and then getting better over the course of like a week. But it kept getting worse, and by Christmas I'd been in the hospital twice. They'd do procedures that'd help, and I'd be fine for a month, and then something else would go wrong. When it seemed like I was finally on the upswing, I got appendicitis. Appendicitis!" She breaks off, laughing. "What the fuck was that? No one knew why, but the surgery went off without a hitch, so we just kept going." [[...]]

"I just kept getting worse. There was nothing anyone could do about it. I was still just a kid and they didn't wanna put me on the transplant list yet. I got so bad that I had to drop out of school and do online school instead. That wasn't good for me. I was in ninth grade when it got so bad that I had to start going in for dialysis." "Can you explain what dialysis is?" "So, um, what your kidneys do is they filter stuff out of your bloodstream and process it, and the stuff they take out goes to your bladder as piss. When your kidneys quit working they can't do that anymore, and you get a backup of all this poison in your blood, so you have to get dialysis, which is where they hook you up to a machine that your blood goes through, gets all the shit filtered out of it, and then goes back into your body. It takes hours, and I had to do it every day for months while I was on the transplant list." Grace trails off as she fiddles with a bracelet on her wrist, twisting it around and playing with the clasp. [["What was that like?"]] [["What about the transplant?"]]

Grace chews on her lip as she continues messing with her bracelet. "It's... uh... I don't really know how to describe it. I was already so sick and messed up. I would pretty much read a full book every day, because there was a library near the hospital, and we'd go every day before my appointment to drop off the last one and find a new one, and then I'd sit and read the whole thing 'cause I couldn't do anything else. And that made me happy, because books are great, you know, whatever. But it was almost like I didn't know how unhappy and depressed I was. I was just on autopilot, like I don't even remember really feeling anything except for about the books I was reading. "But like, I don't know how to talk about how dehumanising it is to walk into a room every single day and have some rando lady hook you up to a machine that keeps you from dying for a few hours. I didn't feel like a person. Like now it doesn't even feel real, it feels like something I read about happening to someone else, because there was barely even a person in there." Her voice is thick, and she's been staring down at her hands this whole time. [["What kinds of books did you read?"]] [["What about the transplant?"]]

She clears her throat and looks up. "Right. Uh, we got the call when we were in the car in the parking lot of the hospital eating lunch before leaving. Subway. I was halfway through my sandwich when my mom's phone rang. She saw it was the hospital and figured it was some test results or something. I don't know what they said or anything, but she looked over at me and I just sorta knew. I couldn't finish my sandwich. "We had to go back inside and they rushed us into this room I hadn't ever been in before and people started coming in and out asking us questions and giving us waivers to sign and shit. I don't really remember a lot of it because I was kind of having a nervous breakdown. But I remember my mom calling my dad and telling him, and her telling me that he was gonna drive in and that he'd get here before. He couldn't, though. It was rush hour, and he got stuck in traffic for hours. "I remember them giving me an IV and wheeling me into another room with my mom, where they were gonna start the anaesthesia. The anaesthesia nurses could tell I was freaking out so they distracted me, asking me about my favorite books and stuff. I remember telling them about one that was coming out in a few months that I was excited for. I don't remember anything after that." [["How did the surgery go?"]]

"I mean, I guess it went well. There weren't any big complications. But I don't remember anything from the first few days afterward. I was on a lot of drugs. It's more the stuff from the next few weeks that stands out. You know, nurses coming in at all hours to do various stuff, and me having to walk with the incisions and stuff. I was on like two dozen different medications to start with, and then they wean you off over time, but I was taking like ten pills with every meal and had like eight IVs and lines in me. It was sort of like dialysis except all day and that I could walk around. You know, kind of. And then I got C. diph and shit myself constantly for a week and a half." "Wait, what?" "Yeah, so C. diph is this bacteria that's pretty much only in hospitals that people get sometimes, especially if they're immunosuppresed, and it makes you just constantly have completely unmanagable diarrhea. And the hospital had this insane policy of only allowing testing once a week, so since they apparently did my test too early the first time I had to wait another week to get a positive result and get treatment, so I spent that whole time either shitting or waiting to shit. It's hell." "That's... uh, wow." "Yeah, it's a pretty gross one. But you said not to hold back, so you know. Shit and all." "You're right about that. So, um, [[how do you think all of this has affected you?]]"

"That's, um, kind of a strange question? Like, I could give you more concrete answers, but those aren't the whole truth, and the kind of answers that people usually want to those types of questions are stupid. Like, if you want me to say 'oh, it's made me more appreciative of what I have' or 'it's made me stronger' you're gonna be disappointed, because I don't know if those things are true, but I know that I'm fucked up over it. You know that distinctive smell that Subway has? I haven't gone into a Subway since then, and the last time I tried I had a nervous breakdown because of that smell. I don't have any boundaries anymore, because I've shit myself in front of strangers half a dozen times. I have a sky-high pain tolerance because of all the needles, operations, and just chronic pain that I've had to deal with. But nobody wants to hear about that stuff, you know? Either disabled people are the nice inspirational story about that poor little girl who only exists to inspire you to overcome your problems, or we're something to point at to show that it could be worse. We're just people, man. We're just people who have to deal with more bullshit than you." [["You wouldn't like it if I painted you to look like an inspiration?"]] [["How would you want to see your story portrayed?"]]

Grace curls her lip in disgust. "No. I'm not an inspiration. I was a scared, dying kid who got better, and now I'm a traumatized adult. Nothing about that is inspiring. It's just sad." [["How would you want to see your story portrayed?"]]

"Just... truthfully. Without any kind of emotional agenda. That doesn't mean without emotion, just without bias. There are parts of my story that are funny, but that doesn't mean that the whole thing is funny. And there's not a lesson at the end. It's not like this whole deal taught me some great lesson as an artist that makes me special or something like that. It just is, like I have brown eyes. I don't know how it's affected my life because I've never known any different. And that makes me crazy because like, what if it did give me some special gift? What if it is the reason that I'm such a good artist somehow, and all of the stereotypes I've been fighting against somehow really apply to me and I don't know it? But there's nothing I can do about that. I just have to deal with it. "So, um, yeah. I don't want anyone to paint me in any sort of light. I just want the truth to be told, like anyone else, I guess." [["Thank you, Grace."]]

She smiles tenuously. "You're welcome! I'm glad to help, even if I get a little preachy sometimes. Just don't make me seem like a shitty martyr stereotype and we're good!" She laughs, and it seems like the stress she carried when talking about her past melts away and you're back with just an average art student. "You'll let me know when you're done with this project, right?" "Yeah, you and the others will have the right of refusal on everything." "Great! This was cool. Good luck on finishing the project!" [[End]]

Thanks for playing! [[Credits]]

Grace smiles this little smile still looking down at her wrists, clearly reliving a happy little memory. "Twilight came out when I was in, what, sixth grade I think? And ever since then I never strayed from that style of young-adult-paranormal-drama-romance stuff. I eat that shit up. I still read that stuff." She laughs. "It made me so happy. It still does. I liked the ones where it was about some ordinary high school girl and she falls in love with a boy who's a monster, or immortal, or whatever, and they can't stay away from each other even though it's dangerous, and they decide to stay together and fight the powers that be in order to live their lives on their own terms. I'm not sure how aware I was that it was just blatant wish-fulfillment for me. I don't think it really matters. All that matters is that these books were what got me through that time. "I'm not exaggerating when I say I read hundreds of them. I literally read about one every day, and that lasted for like a year and a half. I had a GoodReads account, you know, that website where you log what you're reading and rate books and stuff? So I have a record of every book I ever read since like 2010. I've never gone back and really looked at them, but there are a handful I've reread over the years. Some of them were just god-awful, even though I loved them when I was thirteen, but some of them still hold up. I do fanart for them sometimes," she adds, giggling. "I don't always remember all the details of a character's appearance, but I can look up other art as reference for these portraits. And nobody cares about it because a lot of these books weren't even popular when they were new. But it sort of feels like I'm doing this art for my younger self who couldn't do it, so it doesn't really matter that no one ever sees it." [["What about the transplant?"]]

<<audio mainSong play>> The girl sits across from you, hands folded neatly around her paper coffee cup. Her eyes skip across the room, taking in the details of the unfamiliar space. She's young, probably just over twenty, and her eyeliner has sharp little wings. "Grace," you say, and her eyes snap back to yours. "Yes," she says. "So, uh, where do you wanna start?" [["How about with you?"]]

Written by Dan Steinmetz

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