Fragile Systems: a Dialogue around an Exhibition

This conversation was supposed to happen as a talk in the Night of the Arts in October 2018 at Otaniemi. The artist expected a guided audience group to be brought to the exhibition space, but the gallery walk didn’t happen. We decided to nevertheless publish a virtual dialogue between the artist and the curator, raising important questions – How to live with uncertainty over one’s body and life? How to address one’s own limitations? How do we affect each other by being fragile? – in the hope that this conversation will spark further discussion. 

Introduction by artist Jemina Lindholm

Hello everyone and thank you for joining this talk! I’m Jemina Lindholm, the artist of this show. I’m also a bit nervous as it is only me here today doing the “remote dialogue” with the curator of the show Ksenia Kaverina. So I will give a short intro to my exhibition and answer the questions that Ksenia sent.

The title, Sick System, for my solo exhibition comes mainly from the open call theme in M8 Art Space – “System” – which I interpreted as an organism, in this case, a human body. The exhibition discusses the body and mind of a person affected by an illness, and includes social as well as cultural layers connected with the experience of illness. The open call included another theme – ”Uncertainty” – which is for me an evident part of being sick.

My work called 10th Anniversary consists of two photographs. One is titled “one decade down, a lifetime to go”, and the other one is “Happy anniversary! (portrait of an artist 10 years sick)”. Eleven years ago I got my first diagnosis. It occurred to me that it is kind of an achievement; I started to google ten-year achievements, and most of them were related to marriage anniversaries. I borrowed the visual cues from this context, and took a portrait of myself with my invisible illness, as it is also one sort of relationship with changing power structures, involving negotiation and feelings.

In the work Sick Leave, I discuss the bed as a mental as well as a physical space that occurs during bed rest. The bed becomes a tiny universe, where dining room, workroom, living room, and bedroom are all combined in one. I present the work in the form of a screensaver. I wanted to highlight the feeling of slow pace, resting, and saving energy.

A Sick Person series I and II include the works How to Make Decisions and How to Look Sick. How to Look Sick is about representation, and how the experience of sickness is often easily reduced to certain gestures and facial expressions. Here, I mimic Google image search results of the search term “sick person”, using stock photos as the basis for the work. How to Make Decisionsis about the spoon theory – a disability metaphor created by Christine Miserandino to describe life with a chronic illness. 

The meaning of these works is very upfront, and connected with disability studies, which I studied in relation to my own experiences. The show is mainly about how to translate these theories or parts of theories into a visual form.

The following are Ksenia’s questions and Jemina’s responses.

Dear Jemina,

In your work 10th Anniversary, you're turning the focus to the timeline of life with diagnosis, where the present starts from diagnosis. Life appears as not something with a beginning and an end, but something that comes "after" the diagnosis (apparently there is also a "before"). In Sick Leave, we observe a very slow pace of time when you have to stay in bed. What is your relation to time and temporality? 

Dear Ksenia,

Sickness is what one could call a core life experience. It could have also been something else, but for me it is sickness.

When it comes to life before and after the diagnosis, that really is something I have been thinking about and struggling with as a person who lived an able-bodied and “healthy” life before I got sick. That means that I have lived my life with the feeling that the person I was before the diagnosis was the true me, and I somehow should try my hardest to be that person again – in other words, “get better”. Even though change happens all the time and is inevitable, this felt different, because I wasn’t the only one doing the comparison. It was also doctors, as well as my family and friends. That really is something that divides your life into the “before” and “after” parts, and at some point, you start to acknowledge the fact that this is something you have to live with, and in relation to, for the rest of your life. 

As a sick person, there have been periods in my life when things got slow. It takes time to get out of bed in the morning, it takes time to take a shower, it takes time to get out of the house, and it also takes energy. As many of us know. It is very hard for me, at least in these moments, to live in the now, as my mind and body are not in sync. Your wishes and wants don’t meet the needs of your body. The feeling of pain is so overpowering, that it is hard to feel anything else. That of course can be also interpreted as being in sync, but from a different angle. Sickness for me has entailed a lot of waiting, postponing and patience. And accepting that things take a lot more of planning and time, and also the fact that I can’t do everything right away. Or ever. That is also why all of these works were made last fall: I had to wait for the right medication, because I was in such pain and so tired that I wasn’t able to do my individual artistic work. For me, living with sickness includes being forced to think about time, or to be more aware of it as your surroundings work in a rhythm, a different rhythm from yours. You are given information and made aware of things, such as how your life might be shorter than the life of an average person. 

Sometimes you are waiting for something that you are not sure is ever going to happen. I waited for the right medication for ten years. How much longer could I have waited? I don’t know. So when it comes to sickness, it is often a matter of time. Do I have time to do this or that?, as it is time to take the medicine or time to call the doctor.

Dear Jemina,

I admire your braveness to embrace the condition and use it for addressing the topic of living with disability, also through publications. Would be great if you could tell when you decided to do it publicly, in connection with the series A Sick Person Series I and II.  

Dear Ksenia,

I’m not sure if it is braveness. It is just something I happen to discuss in my art. It is both interesting and daunting to me, and I have just continued to work with it. So to answer the question, I never really decided to do anything publicly. I have been making works about sickness as long as I can remember. One turning point that I can still mention was my video installation pieceThree Reflections of Self (2014), where I asked three of the closest persons in my life at that time to interview me on a subject of their choice. I gave them permission to ask me anything. And so it happened that somehow all of the interviews revolved around my illness; of course this experience is part of me, so it is hard to avoid it, but also some of the questions were very straightforwardly about my illness and pain. It was the main topic chosen by two of the interviewees. At this point I probably realized that I was making works about sickness more consciously. This is when I also realised that my closest people also have questions that would have never been discussed between us if the interview situation hadn’t been created. And I realised that sickness is not only in me, but it is also in and affects my surroundings. The works in the exhibition are obviously about sickness and are very straightforward, but the levels/layers of sickness, as one could say, vary throughout my production.

I’m also facilitating a collective zine about art and sickness. That is because I like doing things together, and don’t really enjoy working alone. I do a lot of collaborations, but not on this subject, so I wanted to try it. Maybe it is because I thought these feelings and experiences are both universal and not universal all at once, and not discussed enough or, if so, very one dimensionally. 

Dear Jemina,

Thank you for inquiring about disability access in the building where the exhibition takes place; it has turned out to be not the easiest information to get hold of. The issue of accessibility is complex in many other ways than in building plans. Working with media art, we talk about being ‘assisted’ by certain tools or technology, whereas we talk of disabled people as being ‘dis-abled’ rather than being assisted by prostheses or by others. Seems like it is a language issue. Do you feel there could be better ways to talk about disability, maybe you could give some examples? 

Dear Ksenia,

First I want to make clear that as a one sick individual I cannot speak for all the people with sickness or disability. In my opinion, different words are necessary and needed in different contexts. So I’m not sure if I can really say that some word is universally or absolutely better than some other. 

Disability as a word, in my opinion, has gained a certain status so that it is regarded as appropriate, “neutral” and “correct”. It is used broadly in medical as well as in academic contexts and also in everyday life, so it is also a word that many of us know and recognise. Such words as “differently able” have also been suggested because of the reasons you described above. It is true that, because of these words, it often seems as if the phenomenon is somehow always in relation to an able body and not something whole in itself.

I use the word “disability” because I think that disability studies also entail the experience of sickness and chronic illness, and because there is no separate academic field of study called “sickness studies”, or something like that. I also use the word “sick” a lot because I think it is the most accurate in my case. In my personal life, research, and work, I use the terms ‘crip’ and ‘spoonie’ a lot, too. These are my favourite as they are words that have been created, reclaimed and repurposed by people inside the phenomenon of sickness and disability, and used as tools of self-determination, although in some contexts they are still considered controversial and provocative. Medical terms and diagnosis have their own purpose and place, but they cannot solely be used to describe these experiences. Spoonie and crip are not solely used in relation to the medical or social, but also to the cultural realm. In my opinion, they create a space for acknowledging the potentiality and the different futures and discourses in relation to sickness and disability. They allow complex and contradictory realities; they allow sickness as a process, and not as a fixed category or feeling. They allow me to simultaneously hate my pain, love myself, and want my body to matter.

Dear Jemina,

We had a chance to work together while you were producer of InSEA congress exhibitions, before I got to know your artistic work. I saw you as someone whose performance standards were exceptionally high, so I couldn’t guess then about your condition. When I did learn about it from you while working on the show, I was unsure how to approach it: by being more attentive, and exercising more compassion than before, or by acting normally; it felt that changing my approach would be borderline discriminatory. Yet this discomfort comes to my mind every time while working with someone different – how much should I care? We all have different capacities and bodies limiting us, thus we live at different paces, and I feel that even this understanding is limited. How did you feel about the process – would you like to comment on it? 

Dear Ksenia,

This question also brings me back to universality. I somehow regard this topic or my experience not as something special, but actually as something in common or, as I said above, universal and not universal at the same time. Universal as these are experiences many people have, and not universal as all these experiences are different. With the zine project I wanted to create a platform for more open-ended discussion about disability that continues beyond my own work, and maybe challenges our notions of it and hopefully creates spaces for realization of the multifaceted character of this experience. Maybe the core intention of that project and in life in general could be to work on acknowledging and recognising the irreducible differences between individuals and, at the same time, questioning the boundaries of certain and fixed categories, and the things on which these boundaries are built upon. 

October 2018, Espoo, Aalto University.