“Nothing about us without us!” Radical participation and arts-based methods in health research
In cooperation with ARIAS
The carer and the cared-for, the healer and the sick, doctor and patient: the first has historically been seen as invested with the knowledge and often the power, the second as taking on a passive role. But the focus is shifting, as new bridges between the humanities, the arts and medical research disrupt the traditional hierarchies. It’s time to give patients back the voice of experience that they’ve always had, and blaze a trail towards participation and inclusion in sometimes surprising ways.
Until recently, Western medical knowledge was based on dualist notions about which bodies can produce and own knowledge and which cannot. Hegemonic biomedical discourse and paternalist practices discipline those in positions of dependency, vulnerability or marginality through medicalisation of everyday realities and delegitimization of the experiential knowledge connected to those realities. In the past, this has resulted in top-down research questions, and in doctor-centric medical and health interventions. Interventions, moreover, that ignore patient preferences and are detached and disconnected from the bodies they aim to cure or care for.
Increased focus on patient autonomy and self-determination in medical practice has trickled down into health research. Patient advocacy groups have been breaking into the ivory research tower. They have urged researcher institutions and funding organisations to acknowledge their experiences and emphasise that making space for the patient or client perspective is an absolute condition for effective, equitable and high quality care. In doing so, patients are reclaiming the authority over their own bodies and fighting for the right to have their truths be accepted as medically relevant.
Epistemic justice and a system in which a diversity of voices is heard can only be achieved through radical systemic change and transformation in the way medical knowledge is produced and passed down. Participatory action research (PAR) aims at radical participation, collaboration and co-construction of knowledge; at equal distribution of health care means, equitable health outcomes and attention for the position of vulnerable groups. This evening we discuss how arts-based and creative methods in participatory action research can question exclusionary understandings of legitimate medical knowledge, question oppressive medical hierarchies, and disrupt the patient-researcher binary. The following brief lectures will invite a roundtable and audience members to subsequent debate:
KLIK. Photovoice and photography in community health promotion with children
Tineke Abma and Janine Schrijver
Negotiating health. Intersections of ethnicity and gender in precarious work
Participatory art-based health research with unemployed people: lived experiences as legitimate knowledge
About the speakers
Tineke Abma is Full Professor ‘Participation & Diversity’ and Co-head of the Department of Medical Humanities at Amsterdam UMC. Her work is located at the crossroads of the social sciences, humanities and medical sciences, and addresses urgent and complex social issues that demand interdisciplinary focus, such as elderly care. In 2014 she took the initiative to start the Centre for ClientExperiences with the director of a client advocacy organisation in Amsterdam.
Janine Schrijver is a documentary photographer. Her work explores the relationship between humans and their complex life world, often in urban environments. Together with Tineke Abma, she currently works on the Rotterdam-based KLIK project, where she uses art-based and creative methods to encourage young children to explore themes such as life style and health.
Saskia Duijs is a researcher in the field of gender, labor participation and health at Amsterdam UMC. She is currently conducting her PhD research into the experiences of care workers, who balance paid and undpaid care responsibilities in a context of precarious work. She uses participatory and arts-based approaches to untangle gendered and ethnicized processes that produce and maintain health inequalities at both the individual and the institutional level.
Barbara Groot-Sluijsmans researches at Amsterdam UMC in the field of participatory health research and co-creation. In her work, she joins in partnerships with people in vulnerable situations and other stakeholders in their strive for social justice. She coordinates the Centre of Client Experiences and is engaged in the School for Participation
This event is part of “Say AAHH!”: 9 evenings on Arts And the Health Humanities organised by ARIAS & SPUI25, convened by Erin La Cour and Maaike Muntinga.
What does it mean to be healthy? How can we promote better practices of wellbeing and care? In what ways can the arts and new technology challenge stigmas about mental and physical health? These are but a few of the questions the new Arts And Health Humanities series “Say AAHH!” will address in a series of nine sessions from November 2018 - May 2019.
ARIAS is a research platform by the Amsterdam University of the Arts (AHK), Gerrit Rietveld Academie, Amsterdam University of Applied Sciences (HvA), University of Amsterdam (UvA) and Vrije Universiteit (VU). ARIAS enables intersections, encounters and collaborations between artistic research and research in the humanities, social sciences and natural sciences.
Forthcoming events: more information coming soon!
- #3 31 January
- #4 14 February
- #5 28 February
- #6 14 March
- #7 28 March
- #8 18 April
- #9 2 May
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