Creative Encounters with(in) Health and Illness in Social and Cultural Studies

The research group Safety and Security in Diverse Society is organising a conference at the University of Eastern Finland in Joensuu on 27–28 August 2026.  

The theme, Creative Encounters with(in) Health and Illness in Social and Cultural Studies, invites explorations of vulnerability both as a research topic and as something that researchers themselves may experience. We recognise the borders between health and illness as socially constructed and embodied, and as sites of reflexive and critical research practices that both produce and challenge these constructions. 
 

The programme includes two keynote presentations:

• The first keynote Exploring crip spacetime via video art and autoethnograpy. Rhythms, repetitiveness and enduring yet constantly transforming reality of chronic illness is by Docent Anna Leppo, Dr Salome Tuomaala-Özdemir, and MA Iida Putkuri, who represent the project Realm of the Sick – Exploring the Agency and Participation of People Living with Chronic Illness. They will present a video art work based on their research findings and discuss their work with the audience. Read more about the project here.
• The second keynote Ruumiin runot – haavoittuvuus tutkijan omassa ruumiissa is by Dr Kirsi Törmi, whose presentation will focus on vulnerability as experienced in a researcher’s own body. Dr Törmi’s research and artistic projects have explored themes of encounter, interaction, and the complexities of power and responsibility, with a particular focus on wellbeing and working cultures in the field of performing arts. 

Please see underneath for more detailed descriptions of the keynote lectures and their presenters.

We also welcome participants to present and discuss their ongoing or published research in a supportive and collegial environment. In addition, the programme includes social opportunities for sharing experiences with other researchers. The conference is open to both scholars and practitioners across Finland and internationally.
 
Our sincere aim is to create an atmosphere of safety and comfort that allows participants to be present as whole individuals, supports wellbeing at work, and encourages both questions and critical reflection on the research topics as well as the nature of academic working environment we seek to cultivate.
 
On Thursday, the seminar will be held in English, while on Friday, we will operate mostly in Finnish. Both days it is possible to ask questions and make comments in both languages. Participants can attend free of charge onsite in Joensuu or join in the keynote lectures virtually. It is not permitted to record or film the keynotes. The workshops will convene onsite in Joensuu.
 
Participation requires registration by Sunday 31 May. The final program and Teams links will be sent to participants after the registration has closed.

The seminar is organised in collaboration with Borders, Mobilities and Cultural encounters (BOMOCULT) research community and the Department of Social Sciences.

Potential inquiries: [email protected] and [email protected]

Program 

Thursday

12.00–12.15 Welcoming words (MSSc. Meri-Tuuli Hirvonen & Professor Tiina Sotkasiira)


12.15–13.45 Keynote and a video art work: Exploring crip spacetime via video art and autoethnograpy. Rhythms, repetitiveness and enduring yet constantly transforming reality of chronic illness (Anna Leppo, Salome Tuomaala-Özdemir & Iida Putkuri, Realm of the Sick -project)


13.45–14.15 Coffee break


14.15–16.00 Paper sessions I & II


17.30–19.00 Researchers’ informal get together (the place will be reserved once we know the number of participants) 

Friday (held in Finnish)

8.30–10.00 Työryhmät III & IV 

10.00-10.30 Tutkijoiden aamukahvit (mahdollisuus lepoon)

10.30–12.00 Haavoittuvuus tutkijan omassa ruumiissa (Kirsi Törmi)

12.00–13.00 Lounas (omakustanteinen)

13.00–13.45 Kehollista ja kertomuksellista reflektointia päivän annista

13.45–14.30 Palautekeskustelu ja seuraavat askeleet

Keynotes

Exploring crip spacetime via video art and autoethnograpy. Rhythms, repetitiveness and enduring yet constantly transforming reality of chronic illness (Anna Leppo, Salome Tuomaala-Özdemir & Iida Putkuri, Realm of the Sick -project)

People living with somatic, chronic illness experience a material-discursive reality that is not shared by healthy people, even those who share everyday life with them. Margaret Price (2024) refers to this distinct reality as “crip spacetime”. It is not fixed, a place or a stable experience, but always in a state of becoming. It is thus obscure, not perceptible to those not experiencing it. This gap of understanding is extremely difficult to close. 
 
In our presentation we will explore how chronically ill people’s embodied knowledge of their reality could be expressed in ways that are legible also to healthy people. Attempts to express crip spacetime tend to be interpreted as “chaos narratives” (Frank 2013), which are typically perceived as threatening in their unexplainability. We will explore how academic research could benefit from the means of art and artistic research when trying to reach towards understanding experiences of chronic illness and crip spacetime.
 
In our research project, The Realm of the Sick (Koneen säätiö, 2024-27), two researchers with non-fatal but incurable somatic illnesses collaborate with two artists. Based on autoethnographic diaries kept by the researchers for over two years, the artists created a video artwork titled “Part 1: Time”. The artwork explores different temporalities of living with somatic chronic illness; repetitive cycles of managing symptoms, going through a variety of treatments, reaching out for care, and the bodily experiences of fatigue and pain – but also rare moments of pleasure.
 
As a part of our presentation, we will show the artwork to illustrate how video art can be an illuminating method to portray the slow rhythms, tiresome repetitiveness and forever enduring yet constantly transforming reality of being chronically ill. The artwork can be understood as an experiment of what Sara Wasson (2018) calls “episodic reading”, an attempt to make space for experiences often left unacknowledged due to their incoherence that resists conventional narrative form.
 
Ruumiin runot – haavoittuvuus tutkijan omassa ruumiissa (Kirsi Törmi)
 
On ristiriitaista ja kiehtovaa, kuinka vaikkapa ’hyvää elämää’ tutkivan tutkijan oma ruumis ajautuu turhan usein jaksamisen reunamille ja sen yli. Miten voisimme tunnistaa ja tunnustaa inhimillisen kestävyyden rajat ja pystyisimme tekemään tutkimusta tavalla, joka suojelee lähintä mahdollista luontokappaletta, lähiluontoa, eli omaa ja kanssatutkijan ruumista? Mikäli tutkimuksen nimissä teho viljelemme ruumistamme ja ohitamme sen hienovaraiset heijasteet, somaattinen kommunikaatio voi tihentyä: ruumis voi alkaa runoilla monin eri tavoin. Usein nuo fyysis-psyykkiset oireet ovat juurtuneet kokemuksiin, jotka olemme ohittaneet. Kuten runojen äärellä viipyily ylipäätään, myös ruumiin runot tarvitsevat tilaa, aikaa, viipyilyä. Kuuntelemisen polku avautuu kehotietoisuuden kautta. Kannamme mukanamme tiedostamattomia, ääneen lausumattomia arvoja ja etiikkaa, jotka muovaavat toimintaamme ja valintojamme, usein huomaamatta. Millä tavoin nämä ruumiiseen kietoutuneet arvojen kerrostumat meitä ohjaavat ja missä kohdin ne myös pakottavat? Alustuksessa ja pienimuotoisissa kehollisissa harjoitteissa pääsemme kuulostelemaan edellä mainittua.

Keynote speakers

Anna Leppo is a sociologist and a Lecturer in Social and Public Policy at the University of Helsinki. Her research has focused on the experiences of people in a range of vulnerable situations, such as living with illness or addiction. Currently, she studies chronic somatic illness from the perspectives of embodied experience, materiality and temporality, social and health care services and the possibilities for agency and participation. Leppo is the PI of the research and art project Realm of the Sick – Exploring the Agency and Participation of People Living with Chronic Illness (Kone Foundation 2024-2027). 
 
Iida Putkuri works as a project planner in the project Realm of the Sick – Exploring the Agency and Participation of People Living with Chronic Illness. She has a Master’s degree on sociology and in her career she has been especially focused on the questions of accessibility and equality.
 
Salome Tuomaala-Özdemir is a researcher in the Realm of the Sick project at the University of Helsinki. Her doctoral research in Comparative Religion examined ethical agency in women’s abortion narratives, and since then she has explored intersections of embodiment, narrative and society. Her work spans neighbourhood relations, political imagination and social reproduction of everyday utopias, drawing on experience as both a researcher and a community developer. She has written an autoethnographic diary on living with multiple chronic illnesses and, together with Elina Niinivaara, has co-developed research on embodied knowledge of chronically ill people since 2022.
 
Kirsi Törmi on tanssitaiteen tohtori, joka on toiminut tanssitaiteen parissa laaja-alaisesti tanssijana, koreografina ja tutkijana. Sosiaalinen eetos, taiteen avulla syvenevä itseymmärrys ja myötätunto sekä monitieteinen lähestymistapa ovat lukeutuneet hänen tutkimuksellisiin intresseihinsä. Törmi on myös sosionomi (kriisityö) ja psykoanalyyttinen psykoterapeutti. Tällä hetkellä Kirsi työskentelee psykoterapeuttina omalla vastaanotollaan ja hän erikoistuu kouluttajapsykoterapeutiksi Nuorisopsykoterapiasäätiön ja Helsingin yliopiston yhteistyössä toteuttamissa opinnoissa. Kirsi toimii myös kouluttajana (TRE®, työhyvinvointi) ja työnohjaajana.
 

Sessions

Thursday 27.8. at 14.15–16.00 Paper session I (in English)

1. Marlen Nissinen (Itä-Suomen yliopisto): Social representations of depression in Finnish news articles in 2002 and 2022

This study examines social representations of depression constructed in media. Drawing on social representations theory and using reflexive thematic analysis and relative frequency analysis, this study explored a total of 85 news articles published in a Finnish newspaper Helsingin Sanomat in 2002 and 2022. The study identified three social representations of depression across both datasets, with only slight changes in their contents: 1) depression as an illness, 2) depression as a depletion of psychological and physical resources, and 3) depression as a part of demanding everyday life linked to socio-structural changes. While the first two constitute the hegemonic social representation of depression as an individual, psychopathological syndrome, the third can be understood as a polemical social representation that links depression to socio structural and working life changes. 

The findings show that psychopathological and biomedical explanations of depression have strengthened over the past 20 years, rendering public conceptions increasingly symptom centered. The paper contributes to our understanding of how media representations of depression have evolved in the 21st century and demonstrates the value of a longitudinal approach to studying social representations.

2. Hadi Farahani (Itä-Suomen yliopisto): Lay perceptions of mental health among Afghan forced migrants residing in Finland: Towards a culturally safe approach in social work

This study explores lay perceptions of mental health among Afghan forced migrants in Finland. Semi-structured interviews were conducted with 25 participants. Reflexive thematic analysis was used as the method of analysis. The analysis produced two main themes: external symptoms (changes in physical appearance and behavior) and internal symptoms (burdensome feelings and sensations). Participants rarely used explicit mental health terminology, preferring nuanced culture-specific, individual expressions, and indirect communication about stress and trauma. This study contributes to the understanding of Afghan forced migrants’ lay perceptions of mental health and calls for culturally-safe approaches in social work and mental health services for forced migrants.

3. Falguny Islam (Itä-Suomen yliopisto): Embodied shared vulnerabilities in interfaith research

This presentation addresses one of the major concerns regarding my insider-outsider positionality as a researcher of interfaith marriage. My research primarily follows qualitative methods and focuses on South Asian (Bangladesh, India, and Pakistan) interfaith families belonging to two religious groups, Hinduism and Islam. In many contexts, these religions have been politicized, viewed, and practiced as completely distinct from one another. Given their religious backgrounds and being in an interfaith marriage, my participants (to be selected) will also share their vulnerabilities and anxieties. Although my participants apparently do not face a direct threat to their lives while living in Finland. 
 
Since I am also personally in an interfaith marriage, I assume that, in experiencing interfaith-related vulnerabilities, my positionality as an insider offers a deeper understanding while also carrying the risk of being affected by them. Through this discussion, I, therefore, aim to address: i) how the insider-outsider positionality of a researcher navigates and carries the possibility of creating transactional tensions and anxieties between the participants and the researcher and offer a deeper understanding simultaneously, and ii) how the vulnerabilities of interviewees create ethical dilemmas to resarcher and how to navigate through this.

Friday 28.8. klo 8.30–10.00 Paper session 2 (in Finnish)

1. Reetta Haverinen (Itä-Suomen yliopisto): Cracks in the wellness-gloss? Wellness-influencers cultivating shame resilience on Instagram

Social media contents produced by wellness-influencers convey ideals, norms, and values connected to well-being as well as the good life and appearance particularly among women. Wellness-influencers can therefore be understood as substantial role models whose publications shape what is considered normal, and how individuals relate to themselves and others. Despite their often positive and uplifting tone, these inspirational contents related to well-being may reinforce unrealistic and contradictory ideals while also increase shame and pressures concerning appearance and individuals’ physical and psychological capacities. Furthermore, wellness contents are frequently individualistic and ambiguous, which can contribute to anxiety and other challenging emotional experiences. At the same time, however, social media can also function as a space for peer support, promote relatedness, and expand understanding of normality. 
 
In this presentation, I discuss the positive potential of wellness contents on social media, particularly focusing on Instagram-platform. I explore how wellness influencers may support women’s well-being by cultivating shame resilience among their followers. I argue that by sharing personal struggles, and uncertainties, as well as by displaying imperfection, wellness influencers may contribute to the renegotiation of norms and ideals related to womanhood and well-being, as well as foster empathy, compassion and connectedness, among women.

2. Satu Tani (Lapin yliopisto): Monitahoinen haavoittuvuus neuroepätyypillisenä taiteilija-tutkijana

Saan kuulla, että yksi unelmistani toteutuu: taideteoksiani pyydetään mukaan museonäyttelyyn ulkomaille. Kestää hetken tajuta, etten voi matkustaa sinne. En uskalla. Näyttely on Baltimoressa. Olen paitsi taiteilija-tutkija, myös julkisesti (auDHD-)autisti ja ”väärällä tavalla” aktiivinen sosiaalisessa mediassa. Voisin joutua rajalla ongelmiin. Tutkin väitöskirjassani neurovähemmistöön kuuluvien, erityistä tukea tarvitsevien taiteilijoiden yhteiskunnallista toimijuutta ja sen tukemista taiteen kontekstissa. Olen valkoisena, korkeakoulutettuna cis-naisena välttynyt monilta epämukavilta haavoittuvuuden kokemuksilta, mutta nyt ne tulevat iholle. Konkreettisten rajatarkastuspelkojen lisäksi koen monenlaisia tunteita asemoidessani itseäni uuteen rooliin, tutkijaksi. Osatutkimukseni alku viivästyy, koska (meidän) neuroepätyypillisten nähdään olevan haavoittuvaisessa asemassa ja eettinen ennakkoarviointi, aineistonhallintasuunnitelma ja lupa-asiat edellyttävät keskivertoa paljon tarkempaa valmistelua. Kokevatko tutkimuksessani mukana olevat taiteilijat itse olevansa haavoittuvaisia? 
 
Voin kertoa ja olen viime vuosina julkisesti kertonut itsestäni, neurotyypistäni ja taiteestani ihan mitä haluan, mutta juuri sitä tekemällä olen samalla asettanut itseni haavoittuvaiseen asemaan. Tutkimuksessani mukana olevista henkilöistä en voi kertoa mitä haluan, vaan koen jo etukäteen joutuvani sensuroimaan heidän sananvapauttaan tutkimuseettisistä syistä. Muun muassa näitä kysymyksiä haluaisin tuoda esiin ja yhteiseen keskusteluun paperissani. Esittelen samalla taideperustaista toimintatutkimusta, jota teen Lapin yliopiston Taiteiden tiedekunnan Northern Art, Community and Environment Research -tutkimusryhmässä. Tutkimuksen keskeisiä teemoja ovat tulevaisuusajattelu, kuvittelumenetelmät ja ekososiaalinen hyvinvointi.

3. Leena Leinonen (Itä-Suomen yliopisto): Terveyteen kiinnittyvien sensitiivisten aiheiden tutkimuksen herättämät tunteet osana tutkijan itsereflektiota

Sosiaalitieteissä ja yhteiskunnallisen terveystutkimuksen kentällä tehdään paljon laadullista tutkimusta, joka on luonteeltaan huomattavan sensitiivistä. Sairastuminen ja sairastaminen, sairastuneen rooliin siirtyminen sekä erilaisten SOTE-palveluiden tarpeen ja asiakkuuksien muodostuminen ovat yksilöille merkityksellisiä elämänkulullisia tapahtumia. Näiden tutkimuksellinen tarkastelu edellyttää tutkijalta huomattavaa sensitiivisyyttä läpi tutkimusprosessin. Samaan aikaan myös tutkija itse jäsentää tutkimuksellista toimijuuttaan tutkimuskohteeseensa kiinnittyvän esiymmärryksensä ja erilaisissa ammatillisissa ja yksityiselämän rooleissa omaksumansa tiedon pohjalta. 
 
Tässä esityksessä tarkastelen sensitiivisten, terveyteen kiinnittyvien tutkimusaiheiden herättämien tunteiden merkitystä tutkijan itsereflektiossa. Esitykseni pohjautuu omakohtaisiin kokemuksiini sensitiivisten aiheiden tutkimuksesta. Esityksen tavoitteena on herätellä vertaiskeskustelua tutkimuksellisen itsereflektion tarpeesta osana eettisesti kestävää tutkimusta.