ORIGINAL ARTICLE
Open Access
The impossibility of engaged research: Complicity and accountability between researchers, ‘publics’ and institutions
Veronica Heney,Branwyn Poleykett
First published: 07 December 2021
doi.org/10.1111/1467-9566.13418onlinelibrary.wiley.com/doi/full/10.1111/1467-9566.13418Abstract
Over the past decade, U.K. universities have increasingly sought to involve publics in research as active participants in the construction of academic knowledge. Sociologists of health have largely welcomed this enthusiasm for engaged and participatory ways of working, including methodologies long in use in the field such as patient-led research and co-creation. Despite the strong interest in engaged research, however, we argue that funding patterns, bureaucratic structures and an overreliance on people employed on casual contracts make it extremely difficult, often impossible, to do engaged research in British universities. Drawing on our own experiences, we show how our attempts to practise and deepen accountability to variously situated publics were constrained by the way our institution imagined and materially supported engagement. We argue that it falls to individual researchers to mitigate or work around structural barriers to engagement, and that this process creates dilemmas of complicity. If engaged research is to fulfil its remit for inclusion and its radical potential, researchers need to think carefully about how the U.K. engagement agenda entwines with processes of casualisation, acceleration and projectification, and how institutional recuperations of engagement can undermine its political and epistemic objectives.
INTRODUCTION
Researchers in British universities are increasingly expected to engage nonacademic publics in academic knowledge production. Publics are no longer seen as subjects of research, or as audiences for research dissemination; they are invited into academic spaces to co-create knowledge. Increasing engagement with research is intended to achieve a wide range of outcomes: from improving public scientific literacy, demonstrating value for money and creating more “socially useful” knowledge, to destabilising, even dismantling, hierarchies of academic knowledge production (Martin, 2008; Rose & Kalathil, 2019; Stevens et al., 2014). Including publics in research is particularly urgent in the context of public health research where doing research in collaboration with, and not “on”, most affected people are seen to contribute to renewing and repairing research relationships that have been previously experienced as exploitative (Hunt, 1981; Reynolds & Sariola, 2018). British researchers navigate a specific public engagement agenda promoted by U.K. Research Councils (UKRI, 2021). In the 2000s, “public engagement” was directed primarily at STEM subjects and “premised on a model of dialogic interplay between nonexpert public groups and academic experts” (Watermeyer, 2011). Engagement, however, has significantly expanded to encompass an ethos of partnership and co-creation in research, and as it has done so, it has both resonated, but also conflicted, with longstanding projects of creating counter-hegemonic knowledge inside and outside of the academy.
Both of us responded to calls for funding, which specifically sought out "engaged research" projects, and we were encouraged to either design our projects from scratch using engaged methodologies, or reorient our existing research to meet new criteria. Engaged research as practised at the institution where we worked together is intended to depart from existing “public engagement” strategies designed to “share” the benefits of higher education and research with the public (National Coordinating Centre for Public Engagement, 2021), following criticism of such endeavours as formalising and solidifying “deficit-led approaches” (Hinchliffe et al., 2018: 4) in which researchers are positioned as experts who possess knowledge, and “the public” is understood as lacking in knowledge. We take engaged research to mean the range of practices through which research is embedded in communities from the outset, not through “outreach” or “consultation” but through continuous co-creation, where the social goods of research in the form of remuneration, data, cultural capital and access to decision makers are generated in participation with communities and, ideally, equitably shared.
Public health research has a long tradition of using different forms of engagement (including public and patient involvement (PPI) and co-creation) to reach marginalised people who in the past have been excluded or had their experiences distorted or misrepresented. Engaged research frameworks draw on a range of concepts, values and techniques of research: translation, equity, justice, fairness, transparency and co-construction. As engaged researchers, we explicitly understand engaged research as drawing on pre-existing traditions of feminist and activist research, as well as PPI, user-led and participatory approaches. The sociology of health and medicine is strongly influenced by PPI, which has long been a vital framework (Maguire & Britten, 2018), emerging out of a strong activist tradition around health-care and disability rights encapsulated by the slogan ‘Nothing About Us Without Us’ (Charlton, 1998). Yet, subsequent to the institutionalisation of PPI following the Department of Health's INVOLVE initiative (Rose, 2014: 151), distinctions have been drawn between more tokenistic, consumerist approaches such as upstream consultation and what is considered “authentic” or transformative involvement and co-production (Madden & Speed, 2017; Williams et al., 2020).
Thus, we might also see as significant a focus on ‘user-led’ or ‘survivor’ research, in which those who might be taken as the ‘objects’ of research not only collaborate on its production but also exert control over the research process at all levels (Beresford, 2020; Telford & Faulkner, 2004). Such approaches often explicitly reference participatory research, an approach initially developed in development studies (Chambers, 1983) and described by Bergold and Thomas as oriented towards “planning and conducting the research process with those people whose life-world and meaningful actions are under study” (2012: 4). In other words, there is a rich tradition across these fields of understanding research not as liberation or transformation but as a contingent and complex continuum of more or less constructive practice. These various literatures and practices have long histories and are already in conversation: while we use the term engaged research to describe our work, we see value not in the term's ability to articulate something new but rather in how it expresses a connection to existing fields, recognising this as “a spacious conceptual landscape where multiple terms are used” (Erikainen et al., 2021).
The emergence of the engagement agenda in U.K. universities over the past ten years has coincided with the transformation of these institutions along neoliberal lines and the decline of job security and working conditions across the sector. A range of explanations have been offered for how engagement and engaged research might mesh with other defining features of the contemporary university: acceleration, precarity, competition, elitism and hierarchy. Facer, for example, argues that engagement allows for a measure of access and participation without destabilising hierarchies that underpin knowledge, method and expertise, constituting a “useful inoculation against the potential incursions of unruly publics into the world of increasingly entrepreneurial universities” (Facer, 2020: 22). In this article, we use an analytic of complicity to analyse potential affinities between engaged research and other, parallel ways of assessing, ranking and operationalising research.
The contribution we seek to make to the critical literature on participatory, engaged and co-constructed research is rooted in our experience as early career researchers (at the time of writing, we were a PhD student and a postdoctoral fellow). We begin by considering some of the specific struggles we each experienced as we aligned the particular and context-specific goals of our research with a shared, institutional approach to engaged research. We each explore, from our different perspectives, how we navigated gaps, lapses and silences in how this research was conceived and understood. Heney reflects on researcher positionality in the context of user-led research on mental health and specifically self-harm in the U.K., while Poleykett examines how an emphasis on innovation in engaged research positioned their work on chronicity and everyday in eating in Dakar, Senegal, as ideally exemplifying a U.K.-centric definition of engagement, one that failed to understand histories of community participation and co-production in Senegalese public health. While the disciplinary contexts and geographical locations of our work are different, we both from our specific vantage points consider experiences that became illegible or unspeakable, and experiences and perspectives that went untheorized and unrepresented. In particular, we both consider how specific conceptualisations or mobilisations of engaged research might in fact serve to reproduce, rather than interrupt, ways of doing and valuing research.
We tackle these questions in four subsections: through these different strands and sites of analysis, we hope to demonstrate the impact of institutional structures upon practices of engaged research. We begin by critically reflecting on our experiences of conducting engaged research. In the first section, Heney considers the tendency for engaged research to position direct lived experience of research topics as existing solely outside or beyond the academy. This framing obscures both the complex politics of peer research and the university's undertaking and responsibility to support these researchers. Second, Poleykett examines how conducting engaged research outside of the U.K. showed up how far ideologically, imaginatively and bureaucratically “engagement” was shaped by visions of politics and participation that were highly specific to the U.K. Third, we analyse these experiences in relation to the structural transformation of U.K. higher education over the past decade, tracking the rise and rise of interest in engagement and engaged research alongside parallel processes of acceleration, marketisation, projectification and dependency on precariously employed staff. All of these concomitant trends, we argue, create an environment in which it is very difficult to do engaged research well, even as the expectation that early career scholars will have expertise in engagement is now well established. Focussing specifically on our experiences of practical challenges associated with payment and projectification, we explore how we have sought ways to finesse or otherwise create ‘workarounds’ for institutional limitations. In the fourth and final section, we shift from examining our experiences of navigating these inherent contradictions to examine how the concentration of experimental engaged research practice within cohorts of precarious and early career research is constraining the sustainability and the transformative potential of engaged research. Throughout each of these four strands of analysis, we consider how an attention to institutional contexts allows for exploration of the complex and nuanced forms of complicity generated by attempting to conduct engaged research within existing structures.
Rest in Link.
Why disability justice is a mental health conversation, and mental health is a disability justice conversation
Posted on 3 December 2021 by Ellie Thompson
www.nsun.org.uk/why-disability-justice-is-a-mental-health-conversation-and-mental-health-is-a-disability-justice-conversation/Ellie Thompson from Diversity and Ability unpacks how mental ill-health, distress and trauma intersect with disablement.
As a social enterprise led by and for disabled people, we at Diversity and Ability (D&A) are all too familiar with the typical narratives around disablement and mental health. These conversations are so often dominated by othering messages that don’t come from those with lived experience and do very little to encourage authentic inclusion. But, just like NSUN, we’re an organisation that is founded on that lived experience. And we’re advocating for the exact same thing.
Lots of people with experiences of mental ill-health, distress and trauma also identify as disabled. And lots, if not all, of disabled people have experiences of mental ill-health, distress and trauma. Here’s how we know we’re fighting the same fight.
Disability and mental health in multiple ways
A diagnosis of a mental health condition counts as a disability under the Equality Act 2010, the legal framework that protects our rights to access the world and not be discriminated against. But this is about so much more than diagnoses and our current legal rights.
The experience of being disabled brings mental health challenges for so many of us, in so many different ways. For example:
Disabled people are often more likely to experience domestic abuse.
The discrimination and exclusion we face, both societally and individually, can be deeply traumatic and distressing, and create lasting mental health challenges.
Our disabilities may themselves be linked to trauma, such as chronic pain conditions; the experience of being in constant, excruciating pain is a traumatic one and one that has a lasting impact.
Equally, the experience of mental ill-health is a disabling one. In a world that assumes everyone has good mental health- or, at worst, a few ‘bad days’- we’re faced with access barriers that prevent us from participating, including:
Deeply harmful stigma around mental ill-health, distress, trauma.
Physical spaces that aren’t accessible due to barriers for those with mental ill-health experiences (for example due to noise levels or crowds).
Conversations about mental health that focus on diagnosis, and fail to acknowledge the barriers anyone has to work through to access a diagnosis in the first place.
Mental ill-health, distress and/or trauma are disabling experiences
For D&A, we know that the way forward is to dismantle the concept of disabilities and encourage an understanding of disabling attitudes, environments and situations.
Crucially, we’re not ‘people with disabilities’, we’re disabled people; people disabled by a society that only includes one specific type of person, and creates barriers for the rest of us. Thinking about disablement, not disability, also allows us the space to take a fully intersectional approach, because the barriers presented to us aren’t unilaterally presented to people with a medical diagnosis of a mental health condition, chronic illness, learning difference, or anything else that would come under the traditional definition of ‘disability’. The barriers we face, both physical and attitudinal, are complex and multifaceted. They’re presented to disabled people, Black people, non-Black people of colour, LGBTQ+ people, women, older people, and all individuals and communities who experience marginalisation and discrimination. We can’t dismantle disabling barriers without an intersectional understanding of what those barriers are, and how they’re presented to us.
Under this understanding of disablement, all experiences of mental ill-health, distress and trauma are disabling experiences; we are all faced with plenty of barriers that prevent us from accessing and participating in society in the way we’d like to.
Our barriers – and the tools to break them down – are the same
The main tool we have for dismantling the disabling barriers that are presented to us is an acceptance that they exist and that they need dismantling. The conversations we will then have, and tools we can then use, to make society more equitable and accessible for us all? That’s the easy part.
In the meantime, there are tools and resources available that will help us break down the barriers we face. For example, assistive technology can help dismantle so many different barriers, such as communicating with others, focusing, or responding to triggers. What’s more, there are plenty of barriers that can be at least partially dismantled through simple changes in practice; for example, asking people what communication method works best for them, or providing contextual information about spaces and events beforehand. The best thing about these shifts is that they’re available to all, and make spaces better and more comfortable for all of us!
This month is Disability History Month. At D&A, our thoughts about disability awareness events largely echo NSUN CEO Akiko Hart’s impactful reflection on World Mental Health Day. It can be frustrating to see organisations and individuals pay lip service to disability justice for one month while doing nothing to enable genuine change and to witness more exclusion of lived experience happen even throughout a month that should celebrate us. We’ll spend this month the same way we spend every month: advocating for an understanding of disablement that includes everyone, and gives us the tools to break down barriers for good.
About Diversity and Ability
Diversity and Ability is a social enterprise led by and for disabled people. We champion intersectional neurodiversity and disability inclusion, creating positive and lasting culture shifts through bespoke workshops, consultancy and support. We champion intersectional neurodiversity and disability inclusion, providing free resources, guides and toolkits, as well as supporting individuals and organisations to create positive and lasting culture shifts through bespoke workshops, training programmes and consultancy.
Get in touch with us to find out more!