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“We Need to Talk about Illness in a Way That’s Not Paternalistic”: Sloane Leong Talks to Josune Urrutia

Sloane Leong has been speaking with the her fellow artists-in-residence at the Maison des Auteurs in Angoulême, France. This week, she spoke with Josune Arrutia about cancer, Susan Sontag, and the growing interest in what's being called "graphic medicine."

Sloane Leong: What is the project your working on? What is it about?

Josune Urrutia: The project has no title yet. It’s about six women artists that lived with cancer and decided to make work in order to re-signify the surroundings and meanings of cancer through art.

And so what motivated you to write that sort of story?

It’s been almost ten years since I was diagnosed with cancer, and in a way it changed my life.

Oh, wow.

Yeah, I first made the Brief Illustrated Encyclopedic Dictionary of MY Cancer at the end of 2017. It’s not a comic, it’s actually an alphabet that approaches cancer from different points of view, territories, genres and languages, attempting to understand the universal reality of cancer based on my personal experience with cancer and illness.

It looks really nice. So, it’s kind of like postcard-sized illustrations.

Right. There are 27 postcards, each letter is illustrated with a bit of text.

Oh, I love that.

This is the Brief Illustrated Encyclopedic Dictionary of MY Cancer and we have the A, B, C… So for example in “A” we have aceptar, to accept and in “B,” we have boca, mouth in english. In “C,” calendar and so on.

What type of cancer did you battle with?

Ovarian. So this is the first thing I made related to cancer and illness. The Brief Dictionary has been germinal for other projects like the comic I’m working on here at MdA, or the one with Art Center La Panera and the Radiation Oncology Unit of the public Hospital in Lleida, Catalonia. We are working on a collective illustrated publication about cancer. It’s a participatory project where all the hospital community takes part: the team of radiotherapy oncology, doctors, technicians, patients, family expansive, etc. It’s like my Brief Dictionary, but collective.

Oooh. Okay, okay.

This will be like a dictionary, an encyclopedia, about cancer but with the words and descriptions that people shared. We would like this book to become a tool of accompaniment and scientific dissemination.

Very cool. That’s awesome. Well, this collective encyclopedia what is the theme here? Is it just specifically cancer based?

Yeah. It’s about cancer and mostly participated by people living with cancer or in radiotherapy treatment at the public hospital in Lleida. But also the professionals working in the hospital, nurses, doctors, etc.

And their personal experiences with it?

Right. Around 90 people contributed to the text of this book and I will make the illustrations.

Yeah.

But mostly here I’m working on the comic, the one about these six women.

Ah. Okay, okay. That’s so interesting.

I’m focusing on Beatriz de Costa, Susan Sontag, Jo Spence, Audre Lorde, Anna Halprin and Hannah Wilke. Each of them had cancer, a different kind of cancer. Anna Halprin had cancer in the '70s, Susan Sontag first in ‘75, Jo in the '80s, they were all born in the twentieth century between 1920 and 1940 except Beatriz, the youngest, who was born in 1974, two years before I was born. So they are contemporary. The connection between them is that they all made something related to cancer through art after their cancer experience. Like Audre Lorde did with her Cancer Journals or Jo Spence with The Picture of Health?, Susan Sontag and the book Illness as Metaphor, which is very interesting, and so on. So this is the inspiration and core of my comic.

And then what went into choosing these specific women?

These are women I discovered through my healing and research process. I already knew some of them and their work, like Sontag or Audre Lorde, but I didn’t really know about their cancer experience or their work about it. Their work and life specially touched me in my healing process. Since my cancer I’ve been reading, writing and drawing about cancer quite compulsively. It has been helpful in order to process, understand, integrate and give meaning to my life. I have here some of the comics I read, like Our Cancer Year by Harvey Pekar and Joyce Brabner made in early '90s, or Cancer Vixen by Marisa Acocella Marchetto, but the one I love is Cancer Made Me a Shallower Person by Miriam Engelberg. It’s fantastic!

Very cool.

There are others that I have at home in my library at the “cancer shell.” As I had the cancer in 2009 I didn’t find that many interesting books about cancer and illness. And I really needed it. So after my experience I’m trying to fill a kind of gap. It’s a personal commitment, something I need to share and also think could be useful for others.

How long were you battling your cancer?

About a year. A year of treatment. But the healing process was longer. I think I needed three years more or less to redirect my life. And in a way, I think I’m still healing something that broke inside me.

So had you been drawing beforehand? Had you been drawing comics prior to your cancer experience?

I’ve been always drawing since I was child but never professionally, I never thought I could be an illustrator or even a cartoonist.

What were you doing prior to that?

Graphic design. I was a graphic designer.

Ah, graphic design. What drew you specifically to comics? Why was that a good form for this story?

I think I needed to learn how to tell stories. I’ve always liked to read books since I was child. I love drawings, illustrated books and comics, but I really got into it a few years before my cancer, around 2008. I think I first became aware of my need for storytelling in 2014 (four years after my cancer), and from then on I followed this urge. I needed a lot of time to achieve self-permission and to empower myself. [Laughs.] It’s weird but for me it has been like that.

Yeah.

And also I’m learning a lot of things about myself while I’m working on these women’s lives and works. I see that also the cancer experience transformed them, and in a way they all needed to tell their own stories through their work, they needed to share their experience, show their point of view. Audre Lorde, who I’m actually reading a lot, talks about it and I love it.

Right, like an urgent desire, almost.

Yeah. It is, in a way, but it’s also been over a lot of years. I’ve been slowly working since my cancer, like a little ant, learning how to tell stories, discovering what I really want to talk about, etc. The comic is a very interesting medium because it’s more picture than word.

Yeah, I understand that for sure. So how old were you when you got cancer?

33.

Yeah, that can be so startling. I’ve only had a small run-in with cancer, but it was just a bone tumor. But it was benign, but it was causing me a lot of pain. The doctors didn’t know what it was for like a whole year, they didn’t know, so I was like, maybe that’s it for me — how did that change your relationship to your art? Like you gained more confidence to tell your stories, what else changed, do you think, in your mindset?

A lot of things. [Laughs.] We’re not gonna stop this interview. [Laughter.]

No, I wanna hear it.

For me — one of the main important things I discovered I think, is to be in connection with my needs, and also to be more humbled with what I want from life. And facing the difficulties and fragility and just going hand-by-hand with it, because fragility and vulnerability are strengths, so I don’t know, those are very important lessons for me during this experience. Also though with the creation thing — I need to create so that I feel better with my life, because it has a sense, it has a direction, a sense.

I can definitely understand that.

Like a need of sharing, and a need of purpose. It’s important that their lives — the lives of these women — won’t get lost.

Won’t disappear. You’re keeping them alive and their stories alive.

Their stories, their work, and also the point that a lot of people live with cancer and it’s not dramatic. I mean it’s part of life.

You were talking about Audre Lorde before, she seems to be really inspiring for you. Do you want to talk a little more about your connection with her and her work?

For me, Audre Lorde’s work and words are very inspiring and empowering because she talks about the importance of telling our stories through her poetry. She was a black woman, poet, lesbian, mother and feminist, as she described herself. And during the ’80s, she did a lot of work connecting and empowering different black communities and women. She realized the strength and power in transmitting and sharing stories, our personal stories.

What about Susan Sontag? I read a lot of her essays and critique on art, film and photography but what is your connection there with her?

She battled with cancer also in the early ’70s, I think her first cancer was diagnosed in 1975. And in 1978 she wrote Illness as Metaphor. She talks about the idea of cancer as a battle and the perverse message behind it. She also talks about the use of the word “cancer,” about the weight of the words and how they can also affect our lives. The meaning and use we have given to the word cancer has always been very bad. This affects directly people living with cancer.

Very cool. I wanna read that. It sounds really good.

It’s really very interesting. Her book and thoughts are inspiring, and lots of them very relevant even they were written forty years ago. I need to read more about her biography. Audre Lorde made a book and spoke openly about her experience with cancer. Susan Sontag, I think not that much she wrote more from the theoretical side. I need to research more.

Right. More of an academic approach, for her. I see. Very interesting.

For me, it makes sense. Also because Audre and her feminist view or perspective is more like, life is in the center, approaches —

Everything is very intimate for her.

Yeah — and personal is also political. I love that, that point of view. It’s very different from Susan Sontag as I see so far.

Susan is kind of distant. She has a depth to her essays and probably diary as well, but with Audre, she is front and center — everything is part of her life, I guess.

Yeah, she shares from her entrails, I don’t know, I’m still in the research process so I really don’t know if I’m being confusing... this is not a very directed interview, huh? [Laughter.]

No! I’m excited to learn more about what’s feeding into the story here, because it’s so personal for you, too and is probably helping you still process stuff, right?


Yeah, definitely to talk about it right now, this is helping me. So thank you.

I’m curious — comics aren’t super well known for being very — I don’t know they’re a little bit, in English we have the word “ableist” — So I guess, approaching it in comics, how has your mindset changed in dealing with that subject of the body, of illness and the body?

For me, it has also been interesting to find things like Graphic Medicine? Do you know it?

I’m not sure.

It’s a website, a community of people from science, medical areas and also comics. They collect books, comics, visual books, talking about illness and medical issues. And the idea is to make medicine more human, and through comics try to connect medicine, science and common people, patients. For me it was very interesting to find out this project.

It sounds really cool. Is it based in Spain?

No it’s I think from the UK. But there’s already a Spanish version called Medicina gráfica, they also organized their first Congress last year in Zaragoza, but I couldn’t go. We need to talk about illness in a way that’s not paternalistic.

That makes sense, for sure. And that allows them, it allows people different abilities like… dignity.

Of course.

That’s very cool. I want to pivot a bit into the actual way that you draw and compose your pages, so these are your thumbnails for your book? And you have them sketched, and smaller? Are you gonna work like this with what ink, watercolor? What is your medium of choice?

I like ink and watercolor. But I still don’t know how it will come out in the comic. I’m still making the whole picture of the book. I want to make 20 pages for each of the women and I would also like to make some pages in between, about the story of cancer, because I’m reading this fantastic book, which is The Emperor of all Disease. This is a biography of cancer. I would like to make little chapter breaks.

Oh, very cool. I love that.

The science and medical discovery and evolution of cancer more or less. That’s the idea.

But it’s still forming, yes?

Totally. I mean, I have a lot of work to do.

There’s probably so much material to go through. Actually, how do you choose what material what to include in each section?

I decided to — well, when I realized that I’m not going to make a real biography work of their lives, it was like a whoa, okay, I feel better! [Laughter.]

Right, right, you don’t have to hold their whole lives in the book. You can just highlight.

That’s it, because they are very interesting, their work, their lives, a lot of interesting information, but I said to myself, okay, the main thing for me is the “cancer moment.” So the first thing I made is this.

The timeline.

And in the timeline, I could see that, more or less, all of them, had their cancer around the ’70s and ’80s. So they lived with their cancer, and then, most of them, two or three years after that, brought their experience to art, and that has been inspiring for me.

That’s what you’re zoning in on. Very cool, nice.

I want to focus on that before, and after “cancer moment,” and the need to make something creative with their experience. To create something about their experience.

What are some challenges that you’ve had with this project so far?

Mostly to see the ties. To decide what to put and what to skip. [Laughs.] That’s the most difficult thing.

That seems really hard. I’ve never done like, a biographical comic before, so it seems very intense, because you don’t want to, like, not misrepresent them, but you don’t want to leave important things out, or paint them in a certain way, but you have a very specific subject that you’re trying to narrow in on.

That’s it. You explain with words better than I do. [Laughter.]

No, I can just tell from how you have everything laid out, how complicated this is, it must be challenging.

Yeah, because this is, for example, what I made for, when I asked for the residency. It was four pages about Anna Halprin, this one. But, see? I think it needs to be more fluent in the comic language.

Because now you have like a nine-panel layout, but you want more dynamism, more movement.

Yeah.

That makes sense.

But at the beginning, I thought I wanted to make more of an essay, so this was the reason why I put in a lot of information, and I think that from here to there I made a big step and I now I’m narrowing, as you said, the information.

Yeah, these thumbnails look really great to me. It looks like they’re flowing really nicely.

Better than that, right?

I mean they’re different things, like you were saying. Like this is essay form, which works, but I prefer when the artist has a hand in every page, almost like the page is a response, a back-and-forth with each part of the story so it changes. So I like the pages so far. The plans, at least. [Laughter.] So you’ve been here a couple months now?

A month will be on the 15th.

The 15th, cool. So you’ve been here just a little bit. How has it been for you, the experience at the residency?

Luxury. Fantastic. It’s fantastic to be here. A lot of good people, perfect working environment, it’s great. Concentration.

Can’t beat it, can’t beat it. [Laughs.] That’s awesome. I guess for my last question, I’m curious about the comics scene in your hometown. So Bilbao is where you’re from? So what is the comics scene like there?

There are people, I wouldn’t say a lot of, but there are people of course. I don’t know actually since when, - maybe ten years?-  the Getxo Comic festival which is not the same as Barcelona’s of course, but it’s quite interesting. There are some Fanzine small festivals, we also had a very good Grant for making comics, that unfortunately doesn’t exist anymore, with Alhondiga Institution, I hope it comes back again! But we have a few good comics stores. The biggest one is called “Joker.” And yeah, that’s a very good thing.

Nice. I was talking to some Taiwanese artists that are here and they said it was very hard to make a living at comics. Do you make a living with your comics?

No, I have been making a living as a graphic recorder and illustrator. This is my first comic, I haven’t started looking for a publisher yet but I plan to.

Gotcha. When do you think you’ll be done with this book? Maybe a year or two?

I hope in a year.

Fingers crossed!

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One Response to “We Need to Talk about Illness in a Way That’s Not Paternalistic”: Sloane Leong Talks to Josune Urrutia

  1. Ryan Holmberg says:

    I enjoyed this interview. I am gearing up to right about cancer and latent malignancy in manga related to radiation and nuclear power, so the references to cancer-related comics was very helpful.

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