In October I received an email from my supervisor, “In May 2025 is the Narrative Matters conference in Paris. Maybe it would be interesting for you (Shailoh and I) to go there and present your research?” That week I was babysitting a friend's five cats somewhere in the middle of nowhere (region called the Achterhoek, NL). After some heated mail traffic with a 19-pound Maine Coon leaning on my left arm, exchanging and improving abstract after abstract, we had signed up with a panel on Narrative and the Arts. 

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From version 1.0 to version 5.3

Presenting has never been my thing. It's not that I'm bad at it. I just don't have fun with it. Instead, I sacrifice at least a few months of my life for every presentation due to the stress I experience. And so from December 2024, when we received word that our abstract had been accepted, I was stressed about the presentation in Paris. 

How do I deal with that stress? Prepare well. In January, Shailoh and I were already working on our presentation. We practiced the presentation several times, collected feedback from different groups (University of Twente, Amsterdam UMC, consortium of the project) and processed it, so that we finally left for Paris with version 5.3 and a good feeling. 

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Kill your darlings

During these four months, we didn't just work on the presentation, that is, the powerpoint. It was also the first time for us to really bring together the results of our research. How does curatorial practice engage with the experience of people living with incurable cancer in designing an exhibition? And how do you communicate this to “lay people” when you yourself are so deep in the research? For example, we work a lot with the idea of an “experience of contingency. Contingency is the idea that something could have been different. An event is not impossible, but neither is it necessary (Holzinger, 2011).We speak of an experience of contingency as an event that threatens your existence, with no logical explanation (Wuchterl, 2019). However, such a concept is quite complex to briefly introduce in a presentation, and I notice this in the writing of this blog as well. It is then more understandable to speak of an existentially profound event, and illustrate that with the example of receiving a diagnosis of incurable cancer. Kill your darlings, they say. Many darlings have lost their lives for our presentation. Oh the things we do for the sake of research! 

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Learning from Art-Based Learning

In the end, we chose to present the two branches of our research, Shailoh's side exploring the conditions for resonance, and my side on the “patient experience” (in quotes because the patient role is quite problematic, and language plays a big role in this, maybe I'll write another blog about this), based on the question: What can we learn from (working with) Art-Based Learning? After all, not only are we exploring how Art-Based Learning is experienced by the target audience and how we can implement Art-Based Learning in care and education, in the process we are also learning a tremendous amount about how to create ideal conditions for resonance experiences and meaning-making. 

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Thus, and this sounds very simple but so what I am writing now is the result of many iterations, we arrived at the following lessons that summarize the synthesis of our research.

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Les 1: Paradox of participation 

Listening to the community of people who live with cancer, we heard the need to enter into this encounter without the burden of intense co-creation. Participation in this sense, was not active participation, rather being heard in the need to not be in control. In this sense, a community led approach meant that the community wanted to be led instead of taking the lead. Add resonance

Les 2: Variety for new perspectives 

In curating for resonance, the experience is not fully controllable. However, there are factors that make resonant experience more likely, such as presentation and facilitation. One factor that both curators and participants mentioned is the need for variation - to have different works of art that they may relate to. For there to be a chance of resonance people need to encounter something new, something unexpected. This is important, because these encounters can shed new light, or new perspectives, on existential questions and concerns people with incurable cancer might struggle with, helping them make sense of their situation, (overcoming the narrative crisis), and find meaning again. 

Les 3: Multiple voices & situated knowledge 

Last but not least, we found the importance of listening carefully and not making quick assumptions in order to attune to multivocality and the way in which people’s knowledge and experience is situated in their role and position - both as curators and participants. 

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Over in 20 minutes

In the end, the presentation went well. We had a modest, but interested audience (Friday morning, last day), judging by many nodding faces and lack of laptops in the audience. And I have to say, I was incredibly nervous, which strangely and fortunately didn't show on me. After five months of stress, the big event was over in 20 minutes.

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References:

Holzinger M. Der Zwang zur Entscheidung. Die fragile Zukunft in der Kontingenzgesellschaft. Humanistische Union. 2011;195(3):4-16. Available via: https://www.humanistische-union.de/publikationen/vorgaenge/195-vorgaenge/publikation/der-zwang-zur-entscheidung/

Wuchterl K. Religious-Philosophical Contingency and Empirical Theology Journal of Empirical Theology. 2019;32:169-87.

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