Making the illness experience visible: a participatory photography project with cancer survivors in Singapore

• Main Author: Zuccarelli, Marina
• Other Authors: Michael John Kirk Walsh
• Format: Thesis-Doctor of Philosophy
• Language: English
• Published: Nanyang Technological University 2023
• Subjects: Visual arts and music
• Online Access: https://hdl.handle.net/10356/163616
• Institution: Nanyang Technological University

In the three last decades participatory art, by which I mean the collective involvement of individuals and the emphasis on process as theorised by Grant Kester, Tom Finkelpearl and Mary Jane Jacob, has proliferated. This has coincided with an increased awareness of, and engagement in the social aspect of care to create an emergent appreciation of the importance of medical support beyond the physical. This thesis operates at the intersection of both, to focus specifically on cancer survivors in Singapore. It places emphasis on the processes and dynamics associated with several structured projects, and afford insights into participants motivations and perspectives, which are often downplayed in participatory art discourses. Numerous studies on art and health, some of which focussed on cancer patients in particular, have demonstrated that art-interventions provide emotional support to patients and provide them a space to express their struggles, often invisible to family, friends and society. I have developed these fundamental findings further by focusing on the use of photography as a participatory practice to encourage communication and enrichment. As the inherent characteristics of photography, widely discussed by scholars such as Roland Barthes, Susan Sontag, Margaret Iversen and Vilelm Flusser, offer a conceptual framework to guide critical consideration, I have further explored the potential of the medium to facilitate specific acknowledgment and profound expression of personal concerns through images. Loss, vulnerability, trauma and the unconscious are intrinsically related to the nature of photography as a medium, as Barthes and Iversen observed, and at the same time, I suggest, also closely connected to the concept of illness. The photographic medium as a tool for participatory art, I demonstrate stimulates dialogical exchange and sharing of knowledge among cancer survivors. The image making process enables participants to reflect, recognize new perspectives and elaborate issues related to their condition. The metaphorical visualisation of their concerns is not only a method to represent the illness, but to facilitate and enhance the personal narrative and generate a more profound understanding of the complexity of the illness experiences. Additionally, I ask, what is the role of the artist within a community care institution context and what factors have to be taken into consideration when working with vulnerable communities? While close guidance and instruction was offered on techniques associated with photography, there was no interference on the choice of the subjects matter. Through this creative process, in both face to face workshops and online platforms, participants were able to make visible concepts and concerns that they were not otherwise able to express verbally and to transform them into an aesthetic experience. The outcome of the project is a collection of photographs and texts, which relate untold stories through visual metaphor. Through them an understanding is attempted as to the effectiveness of this participatory photography project to enrich the personal narrative, explore new perspectives on the representation of illness, and generate understanding and empathy for the complex condition of living with cancer. Keywords Participatory Photography, Participatory Art, Cancer survivors, Arts in health, Visual Metaphor, Dialogical Exchanges, Cooperation, Illness Experience