In the sixth post of the Waiting Times takeover, Michael Flexer reflects on the process of enacting publicly engaged research and how a ‘living archive’ came into being.
“The time on dialysis is dead time […] The time can be quite heavy […] I realised early on if I was to allow myself to get bored, I wouldn’t in fact last very long. Making the time productive was a key part of the therapy. The poems are the current product of that.” Colin (in his 70s).
What is waiting? How do we wait? And who are we, who do we become, through waiting?
In different forms and with different methodological approaches, these were the common research questions addressed by all of us on the Waiting Times project these past six years.
Our programme of publicly engaged research approached these questions by waiting with our publics, across the United Kingdom, something that was made considerably easier (in truth, utterly unavoidable) by the lockdowns of 2020-2021.
What do we mean by publicly engaged research? This was a question with which we tussled whilst doing this work. In practice, it meant collaboratively co-creating research with our publics. We didn’t enter spaces with clearly defined research questions and we didn’t try and leave with extracted data. Rather, we developed our relationships with groups we hoped to learn from and with, and those relationships grew through our story-telling sessions; dynamically, the engaged research interventions, the research questions, the publics, and our relationships with them, all mutually co-constructed. Maybe this is just intellectual speak for saying that we muddled along as best we could, anchored not by intellectual certainty or institutional authority but by curiosity, openness and a commitment to democratic principles.
Through a series of different creative workshops with partner organisations including National Health Service (NHS) GP practices, third-sector organisations like Hospiscare, housing associations, and charities including Exeter-based InFocus school for children with visual and cognitive impairments (a vision impairment and complex needs charity), we shared stories; we played music; we looked at photos and personal artefacts; we talked of places and people gone, or yet to come; we reminisced and reflected; we told of our hopes and fears; and, we looked (cautiously) to a future beyond waiting. We told and shared stories, not with some instrumentalist purpose or curative insistence, but with the capacious holding that brings and keeps disparate things together ‘in a particular, powerful relation to one another and to us’, as proposed by Ursula K Le Guin’s carrier bag theory of fiction (Le Guin, 1989, 169).
In doing this, our answers to the questions framing our research arose collaboratively, tentatively, provisionally, sometimes obliquely and sometimes very, very bluntly.
We are grateful for the generosity of the participants who shared their time and experiences with us in this work. It goes without saying that we are also indebted to our fellow researchers involved in public engagement for their insights during the creative workshops.
As part of the Time of Care conference in March 2023, we shared some of the ongoing conversations about public engagement that we have had with fellow researchers and friends of the project, Rachel Purtell, Professor Felicity Thomas and Dr Jen Grove, all of whom have grappled with the challenges of inventing methods for engaged research . We were also joined by participants from the workshops that had taken place as part of the research.
The discussion had at the conference centred on a simple – but not easy – set of principles around engagement. Together we reflected on ethical engagement and disengagement, legacy programmes, endings, and evolving understandings of public-led research in Higher Education.
Purtell strikingly conceptualised the participatory work undertaken in this project through the metaphor of ‘taking stories by the hand’, noting that it was through stories that we were able to bring participants into a space of co-creation, where decisions about the life (and afterlife) of the research could be made together. In the room, Purtell reminded us that while projects and funding ends, people’s lives and experiences are ongoing.
The idea of lives as ongoing is something Thomas and Grove echoed, highlighting the extent to which flexibility is an important element in engaged research. For Thomas, this meant flexibility in the way that researchers work with systems, as in the time of COVID. However, it also extended to taking the time to work with people, to understand that everyone involved in the project is arriving with differing agendas and understandings of the putative research question or problem. It also means understanding what a “good” output might look like for different people: while publications and conferences are significant in one sense, particularly within academia, they might not mean as much to communities outside of these spaces.
In her role as public engagement research specialist at UK Research and Innovation (UKRI), the national funding agency that oversees funding for all the major research councils, Grove was able to speak both from the perspective of a former humanities researcher and as someone working for a funding body, opening up a conversation about developments beyond traditionally ‘time bound, project-based funding’. She highlighted the importance of taking care in the sense ‘of being very careful in how you engage and taking your time working together’. This was linked to one of the insights emerging from the AHRC Connected Communities Programme report about the interface between research and community: ‘time is to collaborative research what a supercomputer is to big data’.
Building a living archive
“I got over the stroke immediately, but picked up some chest infection in the hospital and they keep me there for four weeks, and that was a period of just waiting and waiting to be able to say, look for God’s sake let me go home. Eventually, they did. But then started another period of waiting, a sort of recuperation. Waiting, waiting, waiting, which gave me time to think about what was going to happen. And I find that waiting process was probably the best thing that happened because I could reassess my life …” Amy (in her 80s).
What emerged from the work we collaborated on together were stories – stories of sickness and health, of lost futures and recovered pasts, of resistance and defeat, of defiance and acceptance, of solidarity and of loneliness, of commonality and absolute incommensurability, of despair and – inevitably and in some ways more punishingly – of hope. And these form the base of what we hope will be a growing, living repository of memory and humanity.
Our online living archive is available to view and contribute to at WhatAreYouWaitingFor.org. Please visit it, witness the stories there and, if you wish, add your own experiences and thoughts. (Pro tip: you “enter” the waiting space by zooming in on the waiting room door!)
But our work together wasn’t so much about producing outputs or reaching outcomes, but about the practice of story-sharing, of ‘staying with the trouble’ (Haraway, 2016), of waiting with as an act of care that both generatively creates mutual co-caring and also produces the time-space in which that caring can occur. We hope that the dynamic nature of the living archive will continue that work, and embody that praxis. And we will continue to offer it virtually at clinics, as a way for exploring and interrogating this paradoxical, sometimes purgatorial, experience of waiting. We will have posters in clinics across the UK, with QR codes directing people to our archive – so they can read and write stories while they wait, and share in a collective act of waiting with a temporally and spatially dispersed group of fellow waiters.
Remembering our collaborators
“And the waiting is over, but your condition remains the same, and you wish you hadn’t waited so bloody long, you know, to be told what I think we sometimes already know.” Joan (in her 70s).
It was an incredible privilege to collaborate with Kelechi Anucha and the remarkable staff, service-users and carers in the community at Hospiscare’s Honiton day hospice in 2018 and 2019, running story sharing sessions. That service and so many of those we worked with, laughed with, and cried with, were among those we lost in the pandemic. We hope in its own small way, the archive can be a memorial to each of these enormous human lives.
We hope reading these stories, these windows onto lives both other and ours, both unfamiliar and familiar, in both their absolute specificity and their fractal universality, you find as much to wonder at and about as we did in helping tell them.
Haraway, D. (2016) Staying with the Trouble: Making Kin in the Cthulucene. Durham, North Carolina: Duke University Press
Le Guin, U. (1989) ‘The Carrier Bag Theory of Fiction’. In Dancing at the Edge of the World, 165–70. New York: Grove Press
About the author
Michael J Flexer is a lecturer in English and currently the director for engagement at the Wellcome Centre for Cultures and Environments of Health. He was previously the publicly engaged research fellow in the Wellcome-funded Waiting Times project. Twitter: @michaeljflexer.