Whispers from the Archive: Chronic Illness, Creative Responses and Community

Background -
Chronic kidney disease (CKD) is a long-term condition which affects the function of the kidneys. Progression to kidney failure, when the kidneys have stopped working, needs treatments such as dialysis or transplantation. CKD and kidney failure can affect many aspects of health and life. Currently, more than 1.8 million people in England have been diagnosed with CKD, with approximately another million people undiagnosed. It is a growing public health emergency but is often considered an ‘invisible disease’ because symptoms may not be present until kidney function is very reduced. Additionally, public health awareness of CKD is very low. To alter the course of this epidemic, raising awareness of kidney disease and sharing experiences of this condition is vital.

Our proposal builds on Letter to My Kidney, an engaging participatory arts project which emerged from Barny Hole’s doctoral work which examined the treatment preferences and
priorities of people with CKD. Together with Elspeth Penny, people’s stories of living with CKD were captured in anonymous letters and curated to raise awareness of living with CKD and the difficult treatment decisions people make. From these, EP developed a verbatim play taking participants’ stories to new and different audiences, fostering empathy and a greater understanding of the lived experience of CKD. (https://2buproductions.org/bring-research-to-life/). BH and EP have accrued vital expertise and skills of how to sensitively engage and work together with people living with CKD. They have explored generating further letters using an invitation inspired by airmail paper, to facilitate ease of use and access, created by an illustrator. This pilot public-engagement work demonstrated the potential to enable people living with CKD to share their stories in a creative way, and the opportunities to take these stories to different audiences through the creative arts.

Proposal and aim -
Our aim now is to bring the lived experience of CKD to a broader audience by further developing our ambitious and creative pilot. Our expanded multidisciplinary team includes
Bristol researcher and children’s kidney doctor, Lucy Plumb, and primary healthcare researcher and historian Barbara Caddick.

Our exciting vision for Little Whispers:Hear me is to utilise the creative letter writing process as a participatory research methodology with embedded artistic co-production. By guiding individuals with CKD in a creative advocacy process, their stories will be taken to the audiences that they feel need to hear them.

Learning how to create participatory engaged art with communities: Using the Welfare State International Archive -
As the next step in this process, we want to learn from the Welfare State International WSI Archive and address the following questions:

1) How did WSI approach ‘health’ in their practice?
2) What can we learn from WSI about co-creation of meaningful and engaging community arts practice?
3) How do people living with CKD want to tell their stories; who do they want to share their stories with; how do they want their stories told?
4) Could the WSI archive be used to scope out other ways to democratise health through public art?

The WSI Archive offers a unique opportunity to deepen our understanding of these themes and engage with wider audiences to promote empathy and understanding of long-term conditions. ‘Nothing about us, without us’ describes our take on inclusivity, and how we aim to build new, interdisciplinary understandings of chronic illness. By connecting patients, healthcare professionals, and artists through co-creation we will explore and inspire an expansion of Little Whispers, and more generally, future public health art projects.