Exposition

ZIEKTE <=> WERK / ILLNESS <=> WORK (last edited: 2025)

Philippine Hoegen
open exposition

About this exposition

Introduction to illness as work We live in a society in which paid work is valued above all else and confers status. Those who are ill and do not participate in the labour market miss out on that appreciation. But being ill is hard work. Much of that work is invisible and is not recognised as work at all.   We are a group of 12 people who live with illness in different ways and from different perspectives. In co-creative work sessions, we develop a method for sharing knowledge. Our research focuses on making our invisible work visible, without others appropriating these personal stories and data and us losing ownership. This includes designing a working method in which we are not only the subject of research, but also steer it ourselves and reap the benefits.  All participants have dual roles: we are doctors and patients, artists and carers, or researchers and chronically ill people. The collaboration is explicitly transdisciplinary and co-creative: using tools from artistic practice, everyone is researching and creating. The usual rules of thumb for participatory research – consent forms, GDPR rules, etc. – are approached differently in this collaboration. We are all working together on a new template for equal collaboration: a model that accurately describes how the group deals with the content created, and that is ultimately shared as open source so that other groups can also use the model. We are working towards a concrete, tested, well-described model that the members of the group can take with them and introduce to new circles and collaborations. New insights gained through new experiences are shared and allow the model to evolve. We are working on three magazines, intended for anyone dealing with illness, in which we address three themes within the main topic of illness. In short, the themes are: illness and (collaborative) work, illness and identity, and illness and communication.
typeresearch exposition
date16/11/2025
last modified24/11/2025
statusin progress
share statuspublic
affiliationHKU, University for the Arts, Utrecht
copyrightIllness <=> Work
licenseCC BY-NC-ND
languageBritish English
urlhttps://www.researchcatalogue.net/view/3991994/3991995


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nameIMG_2803 2.JPG
copyrightIllness as Work
licenseAll rights reserved
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nameVerslag ZAW okt 2024-september 2025 def new.pdf
copyrightPhilippine Hoegen
licenseAll rights reserved
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namefront image ZAW verslag set 2025.jpg
copyrightPhilippine Hoegen
licenseAll rights reserved
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