Veronica Heney discusses co-producing resources in collaboration with people with lived experience of self-harm
Read Veronica’s previous posts, on a new methodology for understanding narratives of self-harm, and introducing the make space project, a user-led initiative dedicate to thinking more critically and care-fully about self-harm.
Collaborative, participatory, engaged approaches to research have a long history in the social sciences, particularly with regards to healthcare (Martin 2008; Reynolds & Sariola 2018; Rose 2014). This is in part due to the successes of disability activism, the Nothing About Us Without Us campaign (Charlton 1998), and the subsequent introduction of mandatory Public and Patient Involvement (PPI) in research and service design by the NIHR (Rose 2014). However, while certainly not entirely absent, these ways of working are less common within the humanities. This might reflect, in part, the seemingly greater distance between the humanities and healthcare policy or practice; for those with lived experience of illness, disability, and healthcare and are keen to engage with research it might be less apparent how work within Literary Studies might impact the conditions of their lives and the care available to them. It can feel that the main outputs of literary research are dense tomes of theoretical work, primarily of interest to other academics.
I am myself actually very fond of dense academic tomes, and sincerely hope that they continue to be written, no matter who is likely to read them! But I also want to make a claim for a value of the literary beyond the academy. Indeed my research itself is deeply interested in the role literature or fiction plays in our everyday lives, its presence within the social fabric of our relationships and institutions, its importance in shaping our understanding of the world and of ourselves. Given this, I am also interested in how literary research and thinking might be felt or understood to have broad social relevance, and how it might be communicated in such a way as to make that relevance apparent.
This came to feel particularly urgent as my PhD drew to a close; my research had explored fictional depictions of self-harm as understood and experienced by those who had self-harmed. Thus my thesis drew together interviews with people with experience of self-harm and close-readings of fictional texts to connect literary questions of genre, form, voice and narrative structure to sociological questions of identity, experience and chronicity. That is to say, it explored how narratives of self-harm functioned in the lives of people who self-harmed. In doing this it prioritised their judgements and assessments of fictional narratives and of how those stories impacted the treatment of people who self-harmed. Throughout the interviews, and my analysis of them alongside fictional texts, it seemed clear to me that narratives could be incredibly important in a number of ways, not least in shaping what sorts of care might (or more saliently, might not) be shown or offered to people who self-harm.
Given this importance, it felt like it might be useful to consider ways of communicating this beyond academia; given the broader engaged ethos of my research (Heney & Poleykett 2021), I was keen to produce any such outputs collaboratively. This is often taken to be a central tenet of engaged or co-produced research (Bergold & Thomas 2012). I was grateful to receive an Engaged Research Award from the Wellcome Centre for Cultures and Environments of Health at the University of Exeter. This allowed me to run a series of workshops, co-facilitated by my colleagues at Make Space, a user-led organisation which facilitates conversations around self-harm.
The workshops brought together members of the advisory group for the PhD (a group made up of people with experience of self-harm), people who’d taken part in the interview study, and other stakeholders involved in grassroots, user-led care for people who self-harm. In the workshops we discussed the findings from the PhD, and explored both what felt most important to communicate and who it needed to be communicated to. As a result of those discussions two outputs were drafted, and then refined through a further workshop and other feedback by email. The opportunity to bring different people together to talk about what mattered to us, what felt most urgent, what we wanted to change was incredibly meaningful.
Through this process we came up with two outputs: one resource aimed at creators or writers who might include self-harm in a book, film, or TV series, and another resource aimed at those who care for people who self-harm, such as healthcare professionals, teachers, family, and friends. By producing and sharing them we hope that people are able to gain some insight into the representation of self-harm in fiction, and the issues which surround it.
We hope to encourage, rather than restrict the depiction of self-harm, because stories can be unbelievably helpful and meaningful in an experience that is so often isolating. But we also try to provoke critical reflection, to consider ways that inaccurate or stereotypical narratives might be harmful or might reduce the possibilities for care. We want to alert people to the importance of having open, generous conversations around self-harm, and the possibility that fiction might be helpful in starting those conversations. And we want to encourage people to reflect on how books, films, and TV might have shaped their own assumptions about self-harm, and how that might impact the care they provide. Because most importantly we want to make care for self-harm more possible, more appropriate, more thoughtful, and more abundant.
We talk about inaccurate stereotypes and the tendency to represent only white, middle class young women as self-harming, erasing the many people who don’t fit into this narrow group. We discuss the ways that self-harm can be used to create drama, or shock, or even glamour and the ways this can sometimes feel limited or frustrating. We suggest that it can be easy to assume what a ‘happy ending’ to stories about self-harm is, but that in real life it’s often not that simple.
Throughout the resources we try to emphasise that there is no one way to perfectly represent self-harm because can self-harm can be experienced in many, varied ways and can mean different things to different people. In that spirit, these resources are not intended to be definitive or comprehensive, but we do hope that they might be a useful start, that they might raise important issues and begin conversations. I, personally, am incredibly grateful to the many people who generously collaborated with me to produce these resources – and I’d like to encourage anyone reading this to check them out, to share them widely, and to think about how we can all work to improve care around self-harm.
Veronica Heney is a research fellow at the Institute for Medical Humanities at Durham University, exploring narratives and experiences of anxiety using collaborative and interdisciplinary methods. She is also a co-founder of Make Space, a user-led group that facilitates conversations and care around self-harm.