In April I went to Dansehallerne to see shivr by Ar Utke Ács. The scenography looked like a runway, with seating on either side of a long, rectangular center, draped at one end by a white fabric. But instead of striding down the center as a classical main character, Ács began the performance by crawling slowly beneath the fabric, as a unapollegetic nod to the intestines that their chronic illness resides in and what needs to move through them. It was a performance which investigated the chronically ill body as a non-binary position and my body mirrored the title, giving it goosebumps as Ács´ moved through different stages and nuances of transformation.
Karin Hald [KH]: I want to start by asking you about the process of creating shivr. I can imagine that it has been a process of twists and turns since it’s rooted in your personal experience of dealing with a chronic illness. How has it been working from a personal place of knowledge?
Ar Utke Ács [AUA]: I would dare to say that all my work involves my experience of living with chronic illness, in the same way that my work is shaped by queer embodiment. It is a part of the way I understand and navigate the world as a moving body and therefore also a part of where my artistic practice stems from. However, it was a big decision to work with it, as explicitly as I’ve done with shivr. It feels both vulnerable and nourishing to address it, so explicitly.
My chronic illness is an auto-immune illness that cycles between remissions and flare-ups. And a lot of the time I spend in-between the two: not fully symptom free, neither deadly ill in the hospital. It is not always easy to decipher until I’m in a full blown flare-up. I would describe that there are major cycles or tendencies that stretch into months and years, and then there are also fluctuations that change from day to day.
This in-between state is a recurring theme I have worked with in shivr. I wanted to unfold the chronically ill as a non-binary position. Or in sociological terms, the monster position, that embodies both and as well as neither nor.
During the process, it became ever more present, as I had an increasingly severe flare-up of my condition that peaked just a month before the premiere. It challenged me to ask the question seriously: how can I and do I want to work with dance whilst living with the unpredictability of chronic illness?
I’m caught in this in-between contradiction of working with my body as a medium and chronic illness: should I cancel or should I see if we can keep going at a more low intensity pace? Being stuck on this question requires a lot of energy. When I started to see that my new treatment was working, I was relieved, it is not something I can take for granted. I’m all for saying no and cancelling, in fact I take pride in the times I’ve known my limits and refused to keep going. But I also know cancellation comes with more work and logistical challenges, re-adjusting always does. And I wish to work in a way and a pace that is not only sustainable but allows me to heal.
Working as a dancer with chronic illness is already an oxymoron in itself. It has been important for me not only to address chronic illness thematically but also to expand on the research on how to work with dance whilst living with chronic illness. So it was indeed a confrontation with the reality of a work culture that still operates with being ill or well in a very binary way. As much as I do speak up about matters of disability perspectives and rights in the dance field, I have been ambivalent about working explicitly with it in an institutional setting, since I have seen how easily these perspectives are mis-understood, mis-interpreted and tokenized. Anyhow, my experience is often that living with an unapparent disability is not taken seriously or simply just forgotten, because it is not visible. The fact that it is not visible, also points to the structural aspects of disability that are so often individualized. It is a matter of architecture, but it is as much a matter of rethinking how we work.
With shivr, I wanted to give a voice to the unapparent experiences of chronic illness. Not just my own, but also my spoonie peers I’ve met throughout the years. There is a question of passing, which can be an option for some chronically ill, but also a trap, where issues remain unspoken and taboo. I’ve met colleagues that were fired for coming out about their chronic illness and a dancer in her 40s, who had never told anyone about her conditions apart from her mom and partner. With shivr, I wanted to embrace the taboo, the monstrous. I wanted to embrace the fear I’ve felt in myself and seen in the eyes of others when I’ve told them about my illness at a young age. I wanted to embrace my condition to also find relief and pleasure from this place which can seem impossible. This is mostly a strategy I’ve seen in queer art and writing (like Halberstam) that I wanted to bring into the realm of chronic illness and disability.
In the initial preparation phase I was very oriented towards how I would make a work that would both be enriching artistically but also a show I would be able to perform in different physical states. The video work is both an artistic choice and strategy that opens up the questions of one’s idea of self and one’s insides, the apparent and the unapparent. At the same time I also work with the video as a co-performer that would bear some of the performance labour with me and at times fully takes over. However, working with video and live performance in parallel processes proved to be a challenge, especially during a flare up.
KH: I relate deeply to what you say, for me it’s been a history of dealing with mental illness and queerness and all the taboos that come along with it. I have made work about this and I often think about the fact that because I have been open about this, it might mean that there are jobs I will not get, although qualified, because some think of me as unreliable – just to make one of many examples.
When speaking to this, it’s easy to feel how capitalism works, and when working within a field as precarious as the artworld, it’s tough! Empathy for anything other than the white, cis-het, able body is still a long way coming. But hopefully a practice like yours will pave a bit of the way.
It feels as if there are so many ideas about being ill, which are often misconceptions, that speak to the dichotomy of being either ill or well, as you point out.
At one point in shivr you spoke directly to the audience and in a monstrous way said:
“you don´t look sick!”
If you were to say what living with chronic illness means to you, your life, your body and mind, what would it be?
AUA: Thank you for bringing your own experience into this. It feels vulnerable, especially in times where I’ve heard ’identity politics’ is out of fashion (how convenient). However, dealing with discrimination and structural violence is as important as ever. Once we start to look to act in solidarity and address access structurally, I believe it will benefit the majority of society.
I’ve been wrestling with this question. These past days I’ve been sick with a regular spring cold, which has really knocked me out. They usually do, since I’m on immunosuppressants. So I’m also talking about this from a place where illness once again took control of my life and decisions, even if for a limited time.
It’s a big question and a part of the reason I’m making this series of work dealing with chronic illness. I’m trying to come to a language that is rooted in the embodiment and not merely testimonial. Many communities have attempted to reach change or at least empathy through testimonies, we’ve seen it with my trans siblings and the black lives matter movement. Testimonies only get us that far and it easily leads to backlash from what I see.
I don’t want to explain the experience of chronic illness. It affects me in all areas of my life. But if it was only my condition, my illness, I was facing, life would be a lot easier. What is challenging is the stigmas, the structural discrimination, misconceptions and spectacle people make out of it.
A long time ago, a friend asked me if I was happy that I had a physical illness: that it was not “just something going on in my head”. I understand where that question comes from: I can have similar feelings towards people with apparent disabilities though I know they deal with other kinds of stigmas, I have never felt. However, for me the mental and physical illness are intimately entangled. Btw fuck descartes and his split. I have my own history of mental illness which was recognised way before my auto-immune illness. That being said, many people with mental illness experience physical symptoms just as people with chronic illness struggle with mental illness. The medicine I take in life threatening flares, has psychosis as a common side effect. I think there is no need to compare the gravity and stigma of the two – I can only talk from my experience – and I would rather like to meet with curiosity in solidarity and mutual support.
For me, living with chronic illness has been an ongoing process of grieving. Just like my illness, my grief comes and goes in waves. I grieve who I thought I was, an idea of the future I had just assumed, the years I’ve spend on recovery until now, dependance on a corrupted medical system, the invitations and connections I have lost, waking up and facing my worst trauma on a daily basis, at times not being physically able to walk to the bathroom to brush my own teeth without assistance. This is just to name a few. I got to learn some lessons about vulnerability and mortality early in life. My illness is teaching me a lot even though there are certainly some lessons I would rather have been without.
“But you don’t look sick” is a classic quote. It’s a sentence I’ve heard many times in my life in different variations. Whether it’s meant as a compliment or it’s implying doubt, it’s equally painful. This phrase was the onset for chronic illness memes – a sentence we share with the ‘mad’ community. I think encountering these memes early on helped me see it as a community, as a part of a structural struggle, rather than an individual issue, we each would need to cope with on our own.
KH: While I have been thinking alongside your work, making this interview, I have revisited Sick Woman Theory by Johanna Hedva, a wonderful work! They write towards the end of the book, that “The most anti-capitalist protest is to care for another and to care for yourself. To take on the historically feminized and therefore invisible practice of nursing, nurturing, caring. To take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community. A radical kinship, an interdependent sociality, a politics of care.” Throughout the book Hedva examinines both care both also visibility – who is able to engage in society and thereby be heard.
Does this resonate with you – shivr as a work made from the position of caring?
AUA: Honestly, what care as a word means something very different from what it meant for me back in 2017 when I first encountered My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want It to Matter Politically that would later be adapted into the Sick Woman Theory. I’ve gotten to work with many projects trying to work from aesthetics of care, but as the term got hyped, especially around the pandemic, I also started to see how care in a society like the Danish one is so intimately connected to control and power – more than anything else.
Generally, care as I know it, is conditional and complex. I’m thinking of the first welfare and subsidies which were conditioned on sterilisation of disabled, mad and queer people for instance – a practice we can very well say they have continued with Inuit women. Eugenics has also been seen as care and still is to some people, this is a part of what makes me struggle with that term. I’m wary of ‘care’ becoming projects, but in companionship with protest, solidarity, kinship and interdependence, it rings very differently.
While there was a lot of caring in the process, there was a lot of struggle too. It has meant a lot to have other artists with chronic illness as a part of the process – and I take that with me as essential. Caring has shown up as curiosity, mirroring, ranting, venting, boundaries. But with the unfolding of my flare peek process, there are many questions I ask myself. Most of them are not new. How to continue in a precarious work field like this with a precarious health like mine? Knowing how impossible it feels for someone like me with a uni degree, with funding from the arts council, co-productions with renown theatres, how do I contribute to chronically ill dance artists that have a lot to offer but do not benefit from the structures in the same way. I felt that I desire more communal thinking and creation than what I got to do with shivr.
Johanna Hedva has definitely had a significant impact on how I live, view, work and make art with chronic illness. Sick Woman Theory changed everything for me, like it has for so many others. To me it was an invitation to consider chronically ill bodies as political, not merely individual problems or inconveniences that my surroundings so often had made me feel. It allowed me to see the systems as disabling rather than my body as disabled in of itself. And to see my body as a source of knowledge, wisdom even. I started to ask my pains and my cramps: what stories have you come to tell me? Who sent you, my ancestors? I am still in the process of trying to understand and make kin with my body and its responses. Their work has impacted the work with shivr immensely. Probably in more ways than I am aware, but I will name a few.
I think the very idea of creating a character derives from Hedva’s sick woman but also from their fictional writings like On Hell. With the sick woman they are using an archetype to build a political position deriving from the sick experience, which is both a space for identification and projection. A big part of living with chronic illness is the projections and assumptions. With shivr I was interested in subverting some of the projections and rendering them visible, for example the comment: “You don’t look sick”. I can’t tell how many times I’ve heard this phrase or variations of it. For me it turns conversations and encounters with other humans into encounters with a hegemonic order. But the character is not just a screen of projection for the audience, but for me as well. It has given me space to experiment and shapeshift.
A much more tangible inspiration is an extensive list of words describing illness and disability* that is a part of the essay How to Tell When We Will Die in their latest essay collection of the same name. Hedva names the words as examples of the diverse ways to experience and describe illness and disability and then goes on to ask what happens when we start to unfurl rather than foreclose their nuance. With shivr I wanted to come to a language for illness starting from the guts. It´s this organ that my immune system targets and breaks down as a part of my condition, but also a central organ to the auto-immune mechanisms at large and therefore for people living with auto-immune illness. In one of the scenes shivr starts to unfold their own vocabulary starting from cell to self to self-ish, sick-ish, queam-ish, queer-ish… I wanted the character to not just say the words, but to feel them and play with them, their meanings and perception. I re-read the list from Hedva in conjunction with this interview and felt that this is a material I would like to revisit and develop in some way or form. I love these materials that keep on growing on you with time.
I would like to emphasise a different aspect of the same essay, How To Tell When We Will Die, regarding horror. Hedva writes about how crip and mad people have most often been embodied by the antagonists of stories. The same goes for gay, trans and racialised people. It has felt like a risk to claim the antagonist and monstrous in a disability and chronic illness context. It is a strategy of subversion that is well known within queer writing and performance art (think fx Halberstam), but subversive strategies are still more controversial from a disability context I would argue. I’ve mostly encountered discourse of strength or aesthetics softness in relation to care, and I see where it’s coming from. Living with chronic illness and disabilities is tough in this society, and our efforts are rarely or seldom acknowledged. In a world and a general world order that is very hard, I see the need for softness and caring aesthetics. But what draws me to Hedva’s work is also their brutal visual aesthetics. Lit on fire, monsters, gore. This resonates with me and brings me relief – way more than any pastel curtain or cloud cushion ever could. It speaks to my experience and relieves a part of the burden. Just like I love going to harsh noise concerts and listening to black metal: I get my body and mind shaken and my own personal cloud can evaporate for a moment. I once met a dance colleague with chronic illness who got into BDSM and found it really therapeutic. I found this very inspiring, harbouring the noise and taking control of the pain that is usually out of our hands. Horror and gore becomes a shelter, even a nurturing place to be. That being said, the performance is generally pleasurable for me to do. It doesn’t always translate like that, but neither does it in life (hehe). Not saying, I’m not in pain, because I usually always am. But I’m in an ongoing dialogue with my state and my pains, they are in motion. I made the choreography so I can do it in different states. At times I cannot walk or only with assistance for example, and I would still be able to dance the piece if that happened and I wanted to continue. But the paradoxical thing is that I can often do movements that are seen as way more virtuous than walking. I want the performing to go into dialogue with the tides of my body.
KH: shivr is the first work in a trilogy entitled ’the unapparent trilogy’. What is in store for all of us who want to see more of your work?
So, the next one up is trembl, which works with crip time. I already feel the topic has been very present during the making of shivr, but maybe even more so in the come down. I’m looking forward to starting the artistic process after the summer. The plan is to work with an ever expanding idea of crip time from a chronically ill perspective, ranging from Alison Kafer’s coining of crip time as bending time to meet the disabled body and moving into territories as time in bed, sick time, waiting, grieving, patience, non-linear time, chronology disruption, cycles, time travel, ancestors, sci-fi, glitch feminism. I’m looking forward to bending the clock possibly even more than during the process with shivr.
trembl was just announced as a part of the KSelekt program, so the premiere will be in the end of April 2026 at Skuespilshuset’s small stage.
The third piece will focus on sympoesis, interconnectivity and interdependence between crips. Maybe I have softened more on the ‘care’ until then, only time will tell.
But before leaning into the production heavy part, I am looking forward to hosting a study circle deriving from this series at MDT during the autumn. I am longing for a space with fellow spoonies to read, rest, reflect, move and be moved together. So this I am very much looking forward to! We are planning separatist as well as open sessions. If Copenhagen spoonies are up for a crip study circle for reading and moving together too, I would be so down. Even if this is my home town, I don’t know as many crips/spoonies here as I would like to. Hit me up;)
Karin, I just wanted to thank you for your patience with this interview moving at a sick time pace of post performance physical and existential overwhelm. I enjoyed your questions and the process of responding very much. Looking forward to seeing you around.