Digital Storytelling in Health and Social Policy

Listening to Marginalised Voices

Nicole Matthews, Naomi Sunderland

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781317688235
• Edition: 1
• Topic: Medicine
• Subtopic: Health Policy

As digital life stories continue to assume more and more significance across a range of institutions, so too does their potential to bring into focus once marginalised and neglected voices. Breaking new ground by reframing multimedia life stories as a resource for education, public health, and policy, this book challenges policymakers, professionals, and researchers to reimagine how they find out about and respond to people's daily lives and experiences of health, disability, and well-being.

The book develops theoretical, methodological, and practical resources for listening to digital stories through a series of carefully selected international case studies, from dementia care education to campaigns in the UN to ban cluster munitions. The case studies explore and illuminate different ways that digital stories have – and have not – been listened to in the past. The authors expose the great potential as well as the complexity of using powerful personal stories in practice. Together, the case studies highlight that processes of listening to, learning from, and making use of digital stories involve unavoidable processes of reinterpretation, recontextualisation, and translation which have significant ethical and political implications for storytellers, listeners, and society. In mapping and theorising the movement of stories into new contexts of policy and practice, the book offers a critical lens on the widely celebrated democratising potential of digital storytelling and its capacity to amplify marginalised voices.

Digital Storytelling in Health and Social Policy develops an authoritative and original re-conceptualisation of digital life stories and their use for social justice ends, and will be important reading for researchers and practitioners from a range of backgrounds, including social policy, digital media, communication, education, disability, and public health.

1 Introduction

The idea that people telling stories about their own experiences of ill-health, treatment, and well-being might powerfully change health outcomes is, in some ways, revolutionary. Valuing stories involves questioning the primacy of quantitative evidence about health outcomes and treatments, and potentially disrupting biomedical concepts of illness and well-being. Paying attention to individual experiences of what makes people feel better or worse up-ends hierarchies of expertise. Attending to people’s stories about their own embodied experience of well-being or care shifts perceptions that doctors, nurses, or public health officials are the people who know best about ill-health. Listening to the voices of people with personal experience of disablement and marginalisation also responds to the radical demands of the disability movement that there should be “nothing about us without us”. The promise of stories as a tool for social transformation and social justice, then, is a compelling one.

Over the last twenty years, digital storytelling practitioners, health workers and educators, self-advocates, and community groups, excited by this promise, have worked with storytellers to try to enhance health and well-being. Much of what has been written about digital storytelling focuses on the collection of stories and the value to the storyteller of participating in the storytelling process. However, a few organisations – like the US Storycenter’s Silence Speaks and the UK’s Patient Voices – have built up a wealth of experience of not just gathering stories but using them to prompt professional learning and improvement in clinical service provision and community health. The work of these organisations has underscored the importance not only of people telling stories about their experiences of health and care, but of health professionals and policymakers listening to these experiences. It is this listening – how to prompt it and the complexities of achieving it – that is at the centre of this book.

Our first purpose in writing this book is to map some of the diverse ways in which stories of lived experience have been used to prompt listening, learning, and change in health and social policy settings internationally. Finding case studies in which the potential of stories to prompt change is practically explored, rather than just gestured towards, hasn’t always been easy. We suspect there are many tales of listening to be told by digital storytelling practitioners – workshop facilitators, teachers, community health workers, or advocates – that simply never make it into print. Those with the practical expertise of making listening happen are often not those required to publish about it. Likewise, as we discuss in Chapter two, the unseen “dirty laundry” of what happens to digital stories after initial project funding runs out is not necessarily the sort of tale that funders or institutional sponsors are willing to tell or want to hear. To try to open up this important terrain, we have chosen case studies that offer a complex and honest view of listening to digital stories across a range of health and social policy settings.

In discussing the complexity of promoting listening across a range of health and social policy settings we respond to Nick Couldry’s (2008) call to explore the conditions under which digital stories can be “exchanged, referred to, treated as a resource and given recognition and authority” (p. 388). Our particular aim is to unveil both the complexity and current reality of undertaking these tasks, all of which can be conceptualised as part of listening. As Jean Burgess (2006) has suggested, there is a pressing need to “understand and practically engage with the full diversity of existing and emerging media contexts in which [digital stories] are, or are not, being heard” (p. 212). Our hope is that this book will begin to map the range of contexts in which digital storytelling in a variety of forms has been used as a medium for communicating lived experience in the domain of health and social policy.

To achieve this we have also sought out practitioners and researchers who have engaged with the “nitty gritty” of getting health professionals and policymakers to listen to others’ stories. In the chapters that follow, we investigate the ways that digital stories have been listened to and learned from in professional education (Chapter three); primary and acute health care (Chapter four); community and place-based health (Chapter five); and advocacy and policymaking (Chapter six). In moving across these contexts, we shift from the individual and interpersonal level – the micro-level – at which listening to stories is often discussed, through to listening at the level of organisation and community, and finally to listening at the macro-level of national and international policymaking. In moving across these levels of analysis we aim to acknowledge the fundamental social determinants of health, as well as the role of individual health professionals and particular clinical encounters in shaping the experience of well-being.

Our cartography of this diverse terrain has required framing digital storytelling in a range of sometimes quite disparate disciplinary perspectives, from media studies and cultural theory to the sociology of health. We have also drawn on debates around health care, human services, community development, and health promotion, which accounts for our focus on both health and social policy. In our collaboration as a writing team, we often encountered surprising convergences between arguments and concepts across disciplines, and we have attempted to put similar ideas side by side. At other times, moving from one discipline to another uncovered quite disparate foundational assumptions – often unnoticed or unquestioned in previous studies and literature – that we have wrangled with and unpacked as we have moved along together.

Our second purpose with this book is to understand and theorise current listening practice. We remain passionate about the value of digital stories as a tool for social justice. However, we aim to discuss practices around listening to digital stories in a way that moves beyond idealistic visions of democratising possibilities. We will explore the complexity of listening to digital stories, and the challenges of creating occasions for listening to those stories. We have, less than we hoped, been able to access the experiences of what we might call “end users” of digital stories – although what constitutes “end use” is open to question and debate. In our search to understand how digital stories might be used to improve health and well-being, we have found ourselves talking most often to what we have called here “listening brokers”, people who work to create occasions for listening to stories around health and social policy. In mapping dimensions of listening, we have relied on accounts of listening from people who were there when it happened – storytelling facilitators, patient experience managers, teachers and trainers, advocates and lobbyists. The people we have spoken to aim to encourage listening and sometimes have the power to shape circumstances in which listening happens: creating an atmosphere in a workshop, scaffolding a learning event, building routines and networks in an organisation, planning an advocacy initiative, or building a website. We want to frame these activities as anticipating, planning for, imagining, and co-constructing listening.

In pulling together this book, we undertook twenty-three interviews with practitioners in Australia, the United States (US), and the United Kingdom (UK). Against the backdrop of the academic research on digital storytelling, we’ve combined our own experiences of working on storytelling projects with the observations these practitioners have generously shared. We aim to distil, compare, and theorise these accounts of practice to better understand the realities, potential, and complexities of listening.

There are many handbooks of digital storytelling in print. It is our hope that this book will be useful to people who are passionate about listening to the voices of health service users. In particular, we want to provide ideas for those who aim to learn from stories of lived experience, or encourage others to learn from such stories. We would also like this book to be of value to those who have used digital storytelling in their practice and want to reflect on and extend those experiences. With this in mind, at the end of each chapter we have identified a set of “take-aways” for practitioners to think through. However, this is not a how-to book. As we track the mediation of personal stories as they move from the storyteller and storytelling workshop to lecture theatres, conference suites, board rooms, and the United Nations (UN), we aim not to simplify or codify, but to trouble and complicate existing accounts of the way life experience narratives might be used to enhance health, well-being, and social justice. But before we begin, we need to spell out what we mean by the three key terms in our title: “digital storytelling”, “listening”, and “health”.

What do we mean by “digital storytelling”?

We use the term “digital storytelling” to refer to life-story telling in a variety of mediated forms deployed to prompt social change. Throughout this book, we discuss the important tradition of what Kelly McWilliam (2009) terms “specific” digital storytelling or what others have described as “the digital storytelling movement” or “classic” digital storytelling. Joe Lambert, founder of the StoryCenter (previously the Centre for Digital Storytelling or CDS) in Berkeley, CA, describes this approach to storytelling emerging out of the conjunction of community arts and politics:

Corresponding directly to the extension of civil, economic, and political rights in the larger society, the community artists saw the extension of technical and aesthetic training in the arts as a civil right. They focused their efforts on providing arts access to this training to all sectors of the population who were underserved by traditional education and vocational training systems. At times the emphasis of such projects was on personal voice and the development of identity, esteem, and resilience in the individual; at other times the art making specifically addressed social conflicts and broader political issues. This legacy is at the core of our work.

(Lambert, 2009)

What we will call “classic” digital stories, as produced by the CDS (now known as the StoryCenter), were three- to five-minute-long videos, comprised of images (usually personal photographs) with a first-person narration by a storyteller. Stories were normally put together during a three-day workshop, in which a group of storytellers gather, share story ideas around the “story circle”, script their narrative, and pull materials together on consumer-grade software. Daniel Meadows, who was instrumental in introducing digital storytelling to the UK, characterised the themes and tone of these stories as “short, personal multimedia tales told from the heart” (Meadows, cited in Rossiter & Garcia, 2010, p. 37). The digital storytelling “movement” has attracted advocates and practitioners right around the world, and has been the subject of a range of detailed accounts (see for example, Hartley & McWilliam, 2009; Lundby, 2008; Thumim, 2009).

It would be impossible to ignore the impact of “classic” digital storytelling as a set of practices for telling autobiographical multimedia stories, and an explicit philosophy and rationale. The value of listening to digital stories has long been framed as central to the activities of digital storytellers – the StoryCenter frames its website with the strapline “listen deeply, tell stories”. Several of the case studies that we focus on (e.g. the work of Silence Speaks) emerge from the StoryCenter itself or draw heavily on its methodologies and philosophies (e.g. the influential Patient Voices). However, we want to paint a broader canvas than simply the digital storytelling “movement”. While practitioners in the “classic” digital storytelling tradition have made a passionate and carefully thought through argument for the differences between workshop-based participatory storytelling and other ways of generating and gathering stories (e.g. Hessler & Lambert, 2017), we want to locate this approach to digital storytelling as part of a longer history of participatory video, memoir in various forms, video diaries, photovoice, and other multimedia self-representing practices (e.g. Dovey, 2000; Matthews, 2007). In using the broader sense of the term “digital storytelling”, we don’t want to understate the differences between “classic” digital storytelling and other ways of eliciting personal stories, or set aside the political consequences of those differences. However, our focus on the way stories are mediated and remediated as they move to new places and listeners has suggested to us that the political meanings and outcomes of autobiographical stories can’t be reduced to the process by which those stories have been generated.

Contemporary understandings of digital stories

Our conversations with people using experiential storytelling to prompt change in health care services have suggested that while the CDS model has been widely disseminated, the kinds of experiential narratives that come to be used to prompt professional learning and organisational change are diverse – often influenced by the ideas of “classic” digital storytelling, but also by other approaches to personal narrative. We want to acknowledge the diverse ways in which personal narratives have been used as resources for training aged care staff, inducting nurses, or influencing the vote of representatives at the UN not as a failure to do digital storytelling “properly”, but as a response, for better or worse, to particular institutional locations, goals, and listeners. By including examples of more diverse uses of mediated autobiographical narratives we are trying to find out how personal multimedia storytelling has been used in health care and social service settings, not just how it could be used.

So what are we referring to when we speak about digital storytelling in this book? Our focus is on personal experiential stories, recorded in a variety of digital forms. Some of the case studies we will consider use video; others draw on audio recordings, photographic images, and a few digitised texts. Many of the case studies we discuss blend two or more of these forms. We do not limit our discussion of digital storytelling and listening to stories that are shared only in digital environments such as the Internet. Instead, we trace the movement of digital stories within and between online and offline settings for listening, the particular focus of Chapter two, which centres on listening environments.

Recent work has started to use the term “digital storytelling” to describe fragmented, collaboratively compiled narratives, like a Twitter feed, for example (Couldry et al., 2015). We can certainly see how online practices as diverse as Facebook status updates, in-game avatars, or micro-blogging might be conceived as forms of life-storytelling. While we will consider hyper-mediated forms of listening, particularly in Chapter two, our primary focus here is on stand-alone narratives that can be archived and thus placed side by side, led by the kinds of stories we have found being used in health and social policy settings.

What do we mean by “listening”?

Implicit in the commitment to social justice in both “specific” digital storytelling and broader participatory traditions is that those in positions of power need to listen to the experiences of others who do not typically experience that same power. In “classic” digital storytelling there is a commitment to “deep listening” as an integral element of sharing experiences in the story circle – listening by the facilitator and by participants to their peers. This listening is viewed as shaping the kinds of stories and relationships born in the story circle. Despite this interest in listening as a part of the process of telling stories and creating new forms of community, the digital storytelling literature has much less to say about the experience of listening to stories outside of this first group of attentive storyteller/listeners.

There may be a number of reasons for this lack of attention to listening outside of the story creation and telling circle. One includes a point made powerfully by Penny O’Donnell, Justine Lloyd, and Tanja Dreher (2009), that philosophies of digital storytelling have shared with much cultural theory and political activism of the last fifty years a focus on “voice”. O’Donnell et al. (2009) articulate that “much of the analysis of mediated communication is modelled on a politics of expression, that is, of speaking up and out, finding a voice, making oneself heard, and so on” (p. 423).

In the past decade there has been a new attention to listening as a critical element of communication (Couldry, 2010; Dreher, 2012; Lacey, 2013; Lloyd, 2009; Thill, 2015). Listening as understood by these scholars and those they draw on – notably the work of Susan Bickford – is fundamentally political. Listening is not simply an interpersonal or individual process but one in which collective identities and inequalities of power are almost inevitably implicated. As Justine Lloyd (2009) has pointed out, there has also been a revaluing of listening ...