On Poetry, Disability, and the Power of Medical Humanities

A Discussion with Kimberly Campanello

Portrait of Kimberly CampanelloKimberly Campanello, an academic, creative writer, and poet, was diagnosed with Young Onset Parkinson’s in 2021. She has been awarded a Developing Your Creative Practice Grant by Arts Council England to support her writing of chronic illness and disability. Campanello is presently Professor of Poetry at the University of Leeds, and today she speaks to Brandy about embodiment, disability, and what it means to translate the self to others. Please join us—and check out her work, available here:

 

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Transcript

DR BRANDY SCHILLACE: Hello and welcome back to the Medical Humanities Podcast. This is Brandy Schillace, Editor in Chief. And today I’m here with Dr Kimberly Campanello, who is a poet and an academic, and is also going to enlighten us a bit today about being someone with disabilities and a writer and a creator in all of those ways. So, welcome, Kimberly.

DR KIMBERLY CAMPANELLO: Hey, thanks for having me. I’m really excited to talk with you today.

SCHILLACE: So, tell us a little bit about yourself. I mentioned to Kimberly when we first started talking that I was going to put a bio together, but there’s a lot! [laughs] I’ll let you go.

CAMPANELLO: Yeah. So, I’ve always been a writer. I’ve always been someone who writes and reads literature, poetry, everything, all through high school in Indiana. And ultimately, I needed to get out of Indiana for various Indiana reasons. And so, a long story short, I ended up in the UK in Ireland writing poetry, writing and publishing poetry, and also doing creative writing PhD and becoming a creative writing academic, teaching and leading in practice research, which is great and really, really well resourced in the UK and Europe. So, yeah, so I’ve lived in Ireland, I’ve lived in the UK, I’ve lived in France, I’ve lived a bit more recently, spent a lot of time in Italy, all over the US. I haven’t lived in Indiana since I was 18.

SCHILLACE: Right.

CAMPANELLO: So, Alabama, Florida, Cincinnati, both sides of Florida. Yeah.

SCHILLACE: It’s as close to us as you’ve come. So, I’m in Cleveland, Ohio, of course.

CAMPANELLO: Okay!

SCHILLACE: I have also lived, I lived in Arizona. I actually did part of my dissertation research in Scotland, so I’ve lived over there. So, yeah, I like this plan. The muchness of the world is something that I think a writer likes to explore. [chuckles]

CAMPANELLO: Yes. Exactly. So, I suppose the way I come at sort of medical humanities or chronic illness and disability is well, while I was in Cincinnati, I did an MA in Gender— Well, they changed it from Women’s and Gender Studies to Women’s Gender and Sexuality Studies, which is what I actually have on my certificate. And I was aware of crip theory. I was aware of quite a lot around that because it was a brilliant course that I did at the University of Cincinnati. But experientially, it wasn’t my experience. And fast forward, and I was diagnosed with Young Onset Parkinson’s in 2021 and have since had a whole lot of experiences [laughs] that come from that diagnosis and have increasingly been writing about that.

SCHILLACE: Mm.

CAMPANELLO: So, previously, I’ve written a lot about what I guess I would broadly call erotic autonomy. So, I wrote about mother and baby homes. I’ve written about sort of the church and state and all those sorts of issues in my work, which isn’t a million miles away from some of this.

SCHILLACE: Right.

CAMPANELLO: But certainly because in the mother and baby homes, so many… so many children and so many of the women in them were specifically targeted for having illness or disability and deemed not of value, so.

SCHILLACE: Right.

CAMPANELLO: Yeah. So, then I started writing on this subject, and I applied for a Developing Your Creative Practice grant through the Arts Council England, because I really felt like, hey, I wanna spend some time, well, with some mentoring, so with some writers who have thought about this before over a longer period of time, and also just get some advice on things like how do you navigate gigs?

SCHILLACE: Yeah.

CAMPANELLO: ‘Cause at first, I just stopped. I stopped doing gigs because I thought, gosh, I, you know. It was post-COVID, so we also weren’t doing anything in-person.

SCHILLACE: Mmhmm, right.

CAMPANELLO: So, that sort of thing. So, and then I also had the grant to go to the World Parkinson’s Congress, which maybe can we can talk about a bit later.

SCHILLACE: Yeah.

CAMPANELLO: So, that’s kind of where we are. So, I’ve written some pieces on it in prose and in poetry, and that’s where I am.

SCHILLACE: Yeah. Well, I think it’s really interesting. For those of you who listen to our podcast regularly, you’ll have heard Alice Wong on here a couple times and Alyssa Burgart and several other folks. We talk a lot about disability and the way it changes your sense of embodiment. I have a chronic illness and a disability, which mine are sort of invisible. I have those invisible ones, you know, where everyone just kind of, “You look all right.” [laughs] So, everyone kind of does, misses it. And then I think that almost encourages a kind of masking on the part of someone like myself; I pretend not to be ill even when I am. But you can’t get away from the embodiedness of experience, which is new to someone like me. I live a lot in my head. Some of that’s autism; some of that’s just how I’m built. And to suddenly sort of be forced to recognize the body in its joy, in its sorrow, in its erotica, in its mundane, you know, all of these different facets.

So, I was wondering first, probably, you might need to say a few words to our audience members who might not be familiar with mother and baby homes, particularly in the context in which you were looking at them. But also that sense of body context, it’s not like it’s never there. It’s always there. But the way in which it becomes so centered, I think, when you have to think about your body a lot.

CAMPANELLO: Yeah, I mean, yeah. Well, firstly, so the mother and baby homes were run all around Ireland and the UK and by, often by religious institutions on behalf of the respective states. And that is where women were sent who became pregnant and who were not resourced to have their children or to make their reproductive decisions. So, it actually led to quite a lot of children being sent to the United States or to other countries, sometimes illegally, sometimes coercively, sometimes we don’t even know.

SCHILLACE: Mmhmm.

CAMPANELLO: And so, more recently in Ireland, there have been a number of stories that have broken around that, not least the tomb where there were children buried literally in septic tanks, which is what my work is about. And so, I began writing about that because I grew up in Indiana, down the road from the University of Notre Dame, going to mass at the Basilica and lighting candles at the Grotto. So, I felt very connected to that pathway between the Irish Catholic institutional context and the way the Americans, you know, that circulates. And so, one of the ways that circulates, of course, is through the control of certain bodies and through language and also quite directly. So, yeah. And then in terms of the feeling of your body, yeah, absolutely. I mean, that’s something that I’ve been exploring a lot in my work. I’ve got a long poem in Granta. It’s online, so if people want to check it out, it’s called Moving Nowhere Here. And it’s quite philosophical about these very questions. And I’ve also got a short piece that maybe I could just read these two paragraphs because it kind of does exactly what we’re talking about, if that’s all right. Because—

SCHILLACE: Yes, why don’t you do that? And also, I’ll just tell our listeners, this is always going to be part also, that we have an attendant blog post that will go up, so there will be links there as well.

CAMPANELLO: Perfect.

SCHILLACE: So, yeah. Please, please read.

CAMPANELLO: So, this is from Paradoxical Kinesia, a little short piece, and I write from the perspective of K. So, the poet K finds herself in all of these situations and reflects a lot on what it is to make poetry or what it is to make art or to make anything at all when your body is doing what it’s doing in the world in which it is. And this one comes, this issue of Somesuch Stories was just released actually today. So, it kind of describes a bit about—

SCHILLACE: [inaudible].

CAMPANELLO: Yeah. Thanks. It kind of describes, this is just two paragraphs of it, so it’s a teaser, but. So, K is in the crypt, which actually is the crypt by Notre Dame.

SCHILLACE: Right.

CAMPANELLO: And at the end of the piece, K reflects upon Quasimodo and the portrayal of Quasimodo. “K attempts to walk normally and then limp dramatically through the exhibit. Her illness has decoupled brain from body when it comes to many things, especially walking. She appears drunk or threatening to the peace or vulnerable to attack, like an animal that has been hit by a car. To walk, she deploys cues her physiotherapist taught her, which for a brief stretch can make her movement seem, if not feel, fluid. When tired, she tries consistent limping, an attempt to signify something intelligible is wrong, like an ankle sprain. Both approaches attract either no attention or some sympathy. She is unable to maintain either series of movements for very long.

K often tells her writing students not to spend precious language moving characters around. Unless the way a character moves is important, skip it. Let the reader assume they have moved based on what is around them and what they say and do. K thinks the way she moves now could be significant but wonders how much weight this should be given in any story. She thinks the miraculous qualities of even the simplest movements may well deserve language. She estimates how much space it would take up if done wholeheartedly, the struggle past the school group, rubber boots squeaking at irregular intervals, a tremoring arm jammed under a backpack strap to hold it close. Not for physical benefit, but for the comfort of others, so she, the character, can be with them. This being with others stands for something she can’t quite imagine the writer conveying.” So, I suppose it gets at a few of the same things, describing it.

SCHILLACE: Right, right. Absolutely. Well, the body in space. And I would also say that it’s a queering of the narrative, too, isn’t it? Because the desire of normalcy, that people want you to occupy space in a very specific way, or else they think you are, I love your use of the idea of drunk and disorderly. I really appreciate those two, the terms kind of following on each other because the ease with which that becomes a “oh, okay. I can deal with this because I have now put them in the box of this is a disorderly, this is a drunk and disorderly person. I don’t have to think about that now.” So, you know, it’s also, it’s a label that erases.

CAMPANELLO: Yeah. Yeah, absolutely. And I think that’s something that I’ve been trying to think about is how so many of the experiences that we have are not intelligible. And so, by having this poet K, this character K, I can kind of make her thinking about it intelligible, but also, perhaps how other people might be thinking about it as a process.

SCHILLACE: Mmhmm.

CAMPANELLO: So, you know, the process of her thinking through, “Hey, I’m now realizing I’ve been telling my students not to describe people moving around, but hey, it’s fucking hard to move.”

SCHILLACE: [chuckles]

CAMPANELLO: I probably shouldn’t swear on here. Hey, it’s really hard to do.

SCHILLACE: No, yeah.

CAMPANELLO: But I think part of it is because I’ve been writing these all along, kind of in medias res is my own realizations and my own confrontations with the variations of my experience. And paradoxical kinesia is the thing that you get with Parkinson’s where you can go over difficult terrain, or like, I can do the Stairmaster until the cows come home, but I can’t walk to the shop. [laughs]

SCHILLACE: Mmhmm.

CAMPANELLO: So, you can do difficult things, but you can’t often do the easy things because you’ve lost the automaticity.

SCHILLACE: Mmhmm.

CAMPANELLO: And similarly, so, I have one called paradoxical kinesia. I’ve got another one called tachyphylaxis, so the idea that you’re, there’s gonna be a drop-off in the efficacy of your meds. And so, I try to think about that in relation to obviously the literal experience of tachyphylaxis, but also the way we can experience that with our actual everyday lives or with art. What is it when we can’t feel anything anymore [laughs] about something?

SCHILLACE: Mmhmm.

CAMPANELLO: So and trying to work through some of that medicalized language, which I know in the medical humanities is such a valuable perspective. The idea of the desired effect, which I was told, well, I said, “Well, what’s the desired effect?” And it’s like, “Well, that’s determined by you.” And I’m like, “Well, who am I? Because—”

BOTH: [laugh]

CAMPANELLO: “Who am I if I keep changing because these meds are changing my brain chemistry? So, how will I know what the desired effect is? Because my brain chemistry will have changed, so.” [laughs]

SCHILLACE: Yeah, no. It’s complicated.

CAMPANELLO: Those kinds of questions are, you know, you have to laugh at them at a certain point because it throws you immediately into some of the kind of deep philosophical questions of most of the kind of 20th-century critical theory. And you’re just trying to get your meds, like trying to figure out what your dosage is! You know?

SCHILLACE: [laughs]

CAMPANELLO: So, I try to kind of keep that humorous perspective where I can in the writing itself, which is not for my, it’s not for—

SCHILLACE: Well, and it’s—

CAMPANELLO: Yeah, sorry. Go ahead.

SCHILLACE: No, go ahead.

CAMPANELLO: No, I was just gonna say it’s not just for my benefit. It’s for the benefit of others, but it’s for the benefit of the range of emotions that you might have in a given moment around illness and around disability. You don’t all, it’s not all one note, you know?

SCHILLACE: Yeah.

CAMPANELLO: So, when I’ve read some of this work, another piece that’s in this literary magazine called Tolka, I read it, I read from it in Dublin. And people were laughing and crying and like kind of going through all these emotions through this as K is experiencing all these things. And I’m thinking, well, that’s what I’m trying to achieve.

SCHILLACE: Mmhmm.

CAMPANELLO: Because it isn’t a one-note thing. You’re not just, even in sort of 45 seconds, [laughs] it’s not the same experience. Which is hard to capture, but I’m doing my best anyway, so.

SCHILLACE: But I think, too, it’s difficult to, it’s hard to capture, but I would say it’s even more difficult to communicate, to articulate, to translate, translate that experience.

CAMPANELLO: Mmhmm, yeah.

SCHILLACE: So, I write fiction as well as nonfiction. And in my most recent book, it’ll be coming out in February, the main character—it’s a mystery novel—the main character is autistic like myself. And I decided the best way to portray that was you’re inside her head first. And then there’s another character who also gets like first-person perspective. So, then you’re inside their head watching her, and so you tend to see a lot of overlapping scenes. So, you see things make perfect sense to her. She’s like, “This is a really sensible way to behave.” And then you see what other people see, and you’re like, no, you look like you are out of your mind! So, that attempting to balance that. And like you said, to make it humorous but also grounding it in the disabled experience first so that the reader approaches it and goes, “Yeah, I would, I get that. I would behave that way. That makes sense,” you know? And then showing them what that looks like. Because I think destabilization of our viewpoints is necessary. And while you can do it in fiction, poetry is almost the better genre for that.

CAMPANELLO: Yeah, I mean, and I think I don’t know if it’s the better genre. It just kind of depends on what people wanna read, I suppose. But I mean, that’s kind of why I’ve written this prose stuff from the perspective of the poet K, because I’m such a poet, I have to write prose about poetry. But I also think, as you were saying, when you’re trying to break down that experience for people, it can be quite challenging for them to hear.

SCHILLACE: Mmhmm.

CAMPANELLO: And that’s been really interesting because I’ve not obviously had this experience until recently of reading my work out to an audience in which I’m saying things that they’re not sure how to respond. Which is when you have illness or disability, we experience that all day long. [laughs]

SCHILLACE: Right, right.

CAMPANELLO: People are like, “Oh, you’re too young for that. Oh, but you look really great! Oh, but you’re really strong. Oh, but you’re….” You know. “Oh, aren’t you so positive? Oh, I’ve learned all these things from you.” Right? All these— [laughs]

SCHILLACE: Right, right.

CAMPANELLO: You get that all day long. But then when you’re reading your work, you actually kind of have the floor.

SCHILLACE: Mmhmm, mmhmm.

CAMPANELLO: And you have a way of distilling what you wanna communicate, but also what you want to feel yourself about what you’ve experienced. And that’s what’s interesting about this kind of more memoir-y stuff I’m doing in the third person is I’m like, I’m slightly taking control of the way to think about some of these things that have been quite troubling or quite…. Yeah, I can kind of make it happen. Again, I don’t change it, but it’s changed in my line of sight, which is, I think, another thing that, you know, it’s almost like some people, I find, think that because you’re ill, you never change your mind about anything, or you’ve always got this view of everything. And it’s like, no, I feel like it’s made me more uncertain about many things, but kind of in another way okay with that. But it takes a lot of work to be okay with that, so! [laughs]

SCHILLACE: Yeah, yeah. Alice Wong, one of the things she had said in our interview was about how, for the disabled person, everything is an uncertainty. Like, it’s an uncertainty that you’re going to like, you know, get fed today. There’s so many uncertainties. And it’s actually true of everyone, but most of us are able to ignore it, you know?

CAMPANELLO: Yeah.

SCHILLACE: Most of us can pretend that the job we do tomorrow, [chuckles], that we’ll get up and go to work tomorrow, and we’ll still have a job, and we’ll still have all these things. And then, in fact, none of us know if that is, if that’s, we don’t know if we’re going to get hit by a bus tomorrow. You know, there’s so many things that are uncertain in the world, and you have to, you can’t ignore it when you’re a disabled per— Or I should also mention terminal illness, because Arabella Proffers also had been on our show. She has terminal cancer. And she’s said to me very similar things that people don’t know. You’re like, “Hi, I’m dying of cancer.” They’re like, “Oh!” They don’t know what to do with that. You know, it’s such a disruption.

CAMPANELLO: Yeah. And I think that’s something that I’ve been thinking a lot about, is the symbol, you know, symbolizing something for someone else. The difference between my insight or what you’re describing, the insight into existence [chuckles] versus symbolizing the insight into existence for someone else, which is a very different thing.

SCHILLACE: Mmhmm.

CAMPANELLO: And I think that that’s something that I’ve been thinking a lot about, is how to con-, how to do that. And in the end of the story that I was just reading from, K is reflecting upon how Notre-Dame de Paris and Quasimodo and the way Quasimodo is perceived is in part what saved Notre-Dame Cathedral from being torn down. And she wonders, like, what is it to have what’s going on with your body symbolize something and save a national treasure? Like….

SCHILLACE: Yeah, yeah.

CAMPANELLO: What’s up with that? Like, [laughs]. So, why is it, why are these corollaries so powerful? That’s one of the questions that she asks at the end. And I mean, we kind of know why. Because at the end of the day, I think we’re all afraid of death, and we’re all really, really afraid of, you know, of any kind of dependency.

SCHILLACE: Mmhmm.

CAMPANELLO: Even though, as you say, we’re all already dependent on each other, even if we try to shield ourselves in every possible way. But yeah, I mean, I completely agree with the way you’ve described that.

SCHILLACE: It’s a beautiful thing that I think the work that you’re doing. And of course, you were a poet long before this aspect of your poetry has come about. And so, as we’re, we have about five minutes left in the podcast, I wonder if you can say a bit about how the experience of being a poet, has it changed at all as you’ve moved from the earlier works to works post this diagnosis? Is it the same? Is it different? In what ways?

CAMPANELLO: Yeah, I mean, I think it’s really interesting ‘cause I’m editing my next poetry collection ‘cause I have to give it to my editor. And obviously the stuff was written before I was diagnosed but when I was experiencing things that I couldn’t explain. And so, the angle on it is there. It’s almost like, and so, you see certain things in your work that are kind of latent. And when you have an illness like Parkinson’s that accumulates and degenerates over a long period of time, you kind of see your perspective on the world, I think, being affected by that. I mean, I do think it’s there. It’s just not directly being addressed in quite the same way that I’m addressing it in some of these pieces.

SCHILLACE: Mmhmm.

CAMPANELLO: In my more recent work, I’ve been working on a kind of poetic novel type thing, and it certainly comes up in that. But I’m trying—not trying—it just is part of it because it’s already there as opposed to being in the foreground like those title pieces I said. So, I mean, I kind of anticipate vacillating between it being the stated aim and the thing that’s around. I don’t think it’s ever gonna not be around, obviously.

SCHILLACE: It’s like figure and background, you know?

CAMPANELLO: Yeah. Yeah. I mean, I also think when you can’t, when you can’t walk or you can’t walk far, or when you can only walk in pain and you’re someone who’s a writer who’s used to being able to do that, that is like a really powerful thing that has transformed how I think about space and time and energy. I mean, all of these things that we think about with crip time, you know, it has totally changed my perception of that in that some of the things that I thought were so, I now know are so about [unclear].

SCHILLACE: Right.

BOTH: [laugh]

CAMPANELLO: You know? So, I’m kind of like aha, you know? So, I mean, I guess as a poet, you kind of have these philosophies kind of inbuilt about the nature of reality and all these sorts of questions. And when I was first diagnosed, I kind of made a list of things that I thought were, I had going for me basically. And one of them was, well, I love arts and the humanities, so I kind of have a philosophy of life worked out. So, at least I’ve got that! [laughs] So—

SCHILLACE: This is to sell the Medical Humanities, right?

CAMPANELLO: Yeah!

SCHILLACE: [laughing] We have a philosophy of life.

CAMPANELLO: Yeah. And the philosophy is we have to keep asking questions and thinking it through and talking to each other, you know? It’s not like a final, final moment, you know.

SCHILLACE: Right, right.

CAMPANELLO: And that what’s so valuable about it ‘cause you have to connect in order to do it.

SCHILLACE: And here at the Medical Humanities, the Journal, we don’t actually publish poetry. It’s a research journal, but we do, we have published pieces talking about research using poetry for various things to, in grief processing, in I think there was one about cancer patients. I’ve kind of a little bit lost track. But one of the things I was asked early on is, “Well, why don’t you also publish poetry?” And I said, “Well, because I love poetry, and I don’t think an academic journal is quite, [chuckles] is quite where it needs to be.” But what I do respect is grappling with it as an actual tool around which we can talk about other kinds of things. So, for instance, it’s not just a poem because it’s a poem, but that poetry, as is true of many of the humanities, also gets at things like history and sociability and community. And because the Medical Humanities is not just a work, it’s a connection. We believe that the Medical Humanities is a great connection for social justice and accessibility and all sorts of other things for some of the same reasons that poetry is, right? It makes a point of connection between people and between subjects, which I think is really powerful.

CAMPANELLO: Absolutely. And I think the thing that poetry does is it shows you that there’s more than one thing going on at the same time, which [inaudible; crosstalk].

SCHILLACE: Yes. And more than one interpretation.

CAMPANELLO: Yeah. And we definitely know that’s true in our experiences, as you described with the way your novel is set up.

SCHILLACE: Mmhmm.

CAMPANELLO: And I think I’m just… I’m just a keen believer now, certainly, that they really need us.

SCHILLACE: Mmhmm, mmhmm.

CAMPANELLO: The medics, the researchers, they really, really need, they really need us. And I’ve seen a lot of transformative conversations happen when people are opened up to these sorts of viewpoints.

SCHILLACE: Absolutely.

CAMPANELLO: So, hopefully that will just keep building momentum.

SCHILLACE: Well, like I always tell people, if you don’t, if medicine doesn’t have a human at the center of it, then it’s not really medicine. You’ve done something wrong. So, the humanities is a way of centering the human, and I’m so glad that we all get to be part of it together. Thank you so much for being with us, Kimberly.

CAMPANELLO: Thank you.

SCHILLACE: Thank all of you for listening and being part of the conversation. There will be a transcript on our blog of today’s show, and we hope to see you next time.

 

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