Discourses of Care: Media Practices and Cultures 9781501342820, 9781501342851, 9781501342837

Citation preview

Discourses of Care

ii 

Discourses of Care Media Practices and Cultures Edited by Amy Holdsworth, Karen Lury and Hannah Tweed

BLOOMSBURY ACADEMIC Bloomsbury Publishing Inc 1385 Broadway, New York, NY 10018, USA BLOOMSBURY, BLOOMSBURY ACADEMIC and the Diana logo are trademarks of Bloomsbury Publishing Plc First published in the United States of America 2020 Volume Editor’s Part of the Work © Amy Holdsworth, Karen Lury and Hannah Tweed Each chapter © of Contributors For legal purposes the Acknowledgements on p. xi constitute an extension of this copyright page. Cover design: Eleanor Rose Cover image: Eden Kötting and surgeons (Mapping Perception, 2002). Photograph by Gary Parker. Image courtesy of Andrew Kötting All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system, without prior permission in writing from the publishers. Bloomsbury Publishing Inc does not have any control over, or responsibility for, any thirdparty websites referred to or in this book. All internet addresses given in this book were correct at the time of going to press. The authors and publisher regret any inconvenience caused if addresses have changed or sites have ceased to exist, but can accept no responsibility for any such changes. Library of Congress Cataloging-in-Publication Data Names: Holdsworth, Amy, 1979-editor. | Lury, Karen, editor. | Tweed, Hannah C., editor. Title: Discourses of care: media practices and cultures / edited by Amy Holdsworth, Karen Lury and Hannah Tweed. Description: New York: Bloomsbury Academic, 2020. | Includes bibliographical references and index. | Summary: “This critical anthology, featuring a joint authored critical introductory essay and 15 specially commissioned original essays, is the first edited collection to address the relationship between media (films, television documentaries and non-theatrical cinema) in relation to the concept and practice of care and caregiving”–Provided by publisher. Identifiers: LCCN 2019050912 | ISBN 9781501342820 (HB) | ISBN 9781501342844 (eBook) | ISBN 9781501342837 (ePDF) Subjects: MESH: Medicine in the Arts | Caregivers | Self Care | Mass Media | Essays Classification: LCC R134.5 | NLM WZ 9 | DDC 610.2/477–dc23 LC record available at https://lccn.loc.gov/2019050912

ISBN: HB: 978-1-5013-4282-0 ePDF: 978-1-5013-4283-7 eBook: 978-1-5013-4284-4 Typeset by Deanta Global Publishing Services, Chennai, India To find out more about our authors and books visit www.bloomsbury.com and sign up for our newsletters.

Contents List of contributors Acknowledgements Introduction: Discourses of care and the media: An approach and an alliance  Amy Holdsworth, Karen Lury and Hannah Tweed

vii xi

1

Section One  Media and end-of-life care   1 Signs of care: Assisted suicide on television  Helen Wheatley   2 Gestures of care in Briony Campbell’s The Dad Project  Agnese Sile   3 Care, illness and television spectatorship  Paul Sutton

21 38 58

Section Two  Technology, care and facilitation   4 Are digital platforms and touchscreen devices effective caretakers? The touch-and-go of users with visual impairments  Anna Piccoli   5 Making television accessible with audio description  Kerr Castle   6 Controversies of care: Technology, caregivers and ‘autiebiography’  Hannah Tweed

69 92 112

Section Three  Education, media and care   7 Performances of care: Film, re-education and shell shock  Robert Hemmings   8 A ‘care-full’ cinema: Perspectives on care relationships in French educational film, 1950s–90s  Christian Bonah and Joël Danet   9 Assessing changes to the welfare state: An investigation into the effects of regional media on local services and recipients of care in 1980s North East England  Ben Lamb

133 150

172

Section Four  Bad care 10 Failings in the duty of care: Mediated discourses on children at risk  Maggie Sweeney

193

vi

Contents

11 Care and cultures of television news production: The case of BBC Newsnight  Rowan Aust

210

Section Five  Care and collaboration: Reflections on caregiving, receiving and the creative process 12 B is for … Body  Andrew Kötting 13 Care as practice and provocation: A response to Andrew Kötting  Amy Holdsworth

231

Index

253

245

Contributors Rowan Aust received her PhD in 2019 from Royal Holloway, London. Her doctoral research formed part of the ADAPT Project (www.adapttvhistory. org.uk), a major television production study funded by the European Research Council. Prior to joining ADAPT she worked in television production within both the BBC and the independent sector, specializing in arts news and arts documentaries. She has published in View: Journal of European Television History and Culture and in the edited collection The Past in Visual Culture: Essays on Memory, Nostalgia and the Media (McFarland, 2017). Christian Bonah is Professor for the History of Medical and Health Sciences at the University of Strasbourg. He has worked on the comparative history of medical education, the history of medicaments, human experimentation and more recently on the history of medical film. Professor Bonah is a recent recipient of a major ERC grant ‘The Healthy Self as Body Capital: Individuals, Market-Based Societies and Body Politics in Visual Twentieth Century Europe’. Kerr Castle received his PhD in Film and Television Studies at the University of Glasgow in September 2019. As part of his project – entitled ‘Comfort TV: Considering Everyday Television Use as a Mode of Self-Care’ – he designed and conducted an original research study with the NHS examining television’s contribution to the resilience and well-being of three distinct audiences (family units, first-year undergraduate students and hospital patients). Joël Danet is a contractual researcher at the Department for Medical and Health Sciences at the University of Strasbourg. He has worked in the field of visual education and documentary film history and as a film programme curator for the documentary film association Vidéo les Beaux Jours in Strasbourg. Robert Hemmings is the author of Modern Nostalgia: Siegfried Sassoon, Trauma and the Second World War (2008). His work has appeared in such journals as Literature and Medicine, Word & Image and Criticism. He is presently Visiting Research Fellow at the University of Leeds working on objects of mobility in modern British culture.

viii

Contributors

Amy Holdsworth is Senior Lecturer in Film and Television Studies at the University of Glasgow. Her research focuses on television and domestic media as interdisciplinary objects of inquiry, and her work has drawn upon theoretical traditions and frameworks within memory studies, childhood studies and disability studies. She is the author of Television, Memory and Nostalgia (2011) and Patterns of Feeling: On Living with Television (forthcoming). Andrew Kötting is an artist, film-maker, writer and Professor of Time Based Media at the University of the Creative Arts at Canterbury. He trained at the Slade School of Fine Art in London, specializing in performance and film. In 1989 he collaborated with Leila McMillan in setting up Badbloodandsibyl studios in the French Pyrenees. He has directed numerous experimental short and feature films (Gallivant (1996), This Filthy Earth (2001), This Our Still Life (2011), By Our Selves (2015)) and performed across the UK and Europe. He has been awarded prizes at international film festivals and won commissions from the BBC and Channel 4 and the Arts Council. He also produces bookworks, CDs, LPs and paintings, many in collaboration with his disabled daughter Eden. Ben Lamb is English Studies and Creative Writing Course Leader at Teesside University. As a television historian his established research examines representations of social class, gender and political discourse across genres of factual and fictional programming. He has published on the relationship between aesthetics and ideology, and how different television production systems have impacted upon the resultant modes of realism. Ben’s latest book, You’re Nicked: Investigating British Television Police Series, is available from Manchester University Press. Karen Lury is Professor of Film and Television Studies at the University of Glasgow, and much of her research examines the figure and agency of the child in film, television and non-theatrical media. Her recent publications have engaged directly with questions related to care and the ethics of representation in diverse contexts – including media representations of zoo animals and charity telethons. She is a long-standing editor of the international film and television studies journal Screen. Anna Piccoli has been a project manager in Brussels since 2017 and is involved in social research for various projects, policy studies and tenders with the European Commission. Anna has a background in communication sciences,

Contributors

ix

which she acquired at the USI in Lugano and at the LMU in Munich, and holds a Research MA in Media Studies with a specialization in television and crossmedia from the UvA in Amsterdam. Drawing from the experience she gained working in the field of communication and health, Piccoli has focused on issues of accessibility and on the use of media by people with disability. In her research, she has devoted particular attention to the ways visually impaired and blind users relate to digital platforms and mobile applications. Agnese Sile completed her PhD in Modern Thought at the University of Aberdeen in 2016. Her background is in classical music, and graphic and media design. Sile is currently teaching at Edinburgh College of Art. Her main research interests are visual narratives of illness experiences in the intersection between psychology, medical science and creative practice, especially photography. Paul Sutton is an independent film scholar. His research covers psychoanalytic and film theory, as well as Italian and French cinema and critical theory. He has published articles in journals such as Screen, French Studies and the Journal for Cultural Research. He is currently revisiting elements of his work on Afterwardsness in film while also writing on the Italian experimental film-maker Ugo Nespolo. Maggie Sweeney is Lecturer in the Department of Media, Culture and Society at the University of the West of Scotland.  In June 2016, she was awarded her PhD from the University of Glasgow, entitled ‘The Missing and the Murdered: Crime Narratives in the Mediated Public Sphere’. The central focus of her doctoral research was concerned with examining media coverage of the missing and the murdered child and provided an account of the discourses that govern Western concepts of childhood, motherhood and the complexity associated with contemporary mourning practices in relation to the unexpected disappearance and death of young children. Hannah Tweed is a senior policy officer and researcher in the third sector. She supports work to drive public service reform so that disabled people, people living with long-term conditions and unpaid carers enjoy a high quality of life, underpinned by rights to independent living, choice and control. Prior to her current role Hannah worked at the Universities of York, Stirling, Edinburgh and Glasgow. She obtained her PhD from the University of Glasgow in 2015.

x

Contributors

Helen Wheatley is Associate Professor in Film and Television at the University of Warwick and Director of the Centre for Television History, Heritage and Memory Research. She has published widely on television history and aesthetics and is the author of Gothic Television (2006) and Spectacular Television: Exploring Televisual Pleasure (2016). She is currently writing Television: Death (forthcoming).

Acknowledgements This edited collection stems from a Wellcome Trust-funded conference ‘Discourses of Care: Care in Media, Medicine and Society’ held at the University of Glasgow between 5 and 7 September 2016. Sincere thanks are due to the collection’s contributors for their critical engagement with the project – both those who participated in the original conference and those who became involved later in the process. This work was supported by the Wellcome Trust [201422/Z/16/2].

xii

Introduction: Discourses of care and the media An approach and an alliance Amy Holdsworth, Karen Lury and Hannah Tweed

Care is a critical issue. This anthology is the first edited collection to address the relationship between media and the concept and practice of care and caregiving. Our understanding and use of the term ‘media’ incorporates both the familiar concept of ‘the media’ (associated with forms of mass communication) and media as the plural form of medium (the means, material or form by which something is communicated or expressed). It is with this understanding in mind that the collection includes chapters on a range of artistic and cultural forms, bringing together scholars from film and television studies, media and cultural studies, literary studies, medical humanities and disability studies. Collectively, the contributions examine the ways that analysis of media texts and practices can contribute to scholarship and understanding of health and social care, and how existing research on care, specifically the ethics of care, can inform our understandings of media. The collection derives, in part, from a Wellcome Trust-funded conference held at the University of Glasgow in 2016, which was framed by keynotes from philosopher Eva Feder Kittay and the artist–film-maker Andrew Kötting. Kötting’s presentation is included here as a conclusion to the collection, while Feder Kittay’s writing informs many of the essays across this book. It is our hope that the anthology will provide a significant first step towards building interdisciplinary alliances and driving forward research that places care and caregiving at the centre of our understanding and evaluation of different media. In turn, we hope to offer scholars of health and social care a greater sense of the significance of media forms, texts, institutions and practices in the creation and circulation of cultural and societal understandings of care. Our understanding of media is therefore not limited to its ability to simply represent care; we are equally concerned with investigating media technologies and the ethics of media as practice as they are embedded within the value of care and caring practices.

2

Discourses of Care

Our aim is not to offer specific definitions of what care is in relation to media but to interrogate the agency of media texts, forms and technologies within what we refer to as the discourses of care. Our various contributors consider the representation of care and caregiving through a range of forms and practices (documentary, photography, film, non-theatrical cinema, tabloid media, autobiography and public service broadcasting), but they are also equally engaged with the labour and practical and ethical dimensions of the production of these representations and the discourses of care. In each contribution we have asked our authors to reflect on the medium specificity of their case studies and to engage with the particularities, possibilities, priorities and constrictions (aesthetic, institutional or material) of different media forms. It is in this attention to medium specificity that we make clear what the analytical traditions within media and cultural studies can bring to scholarship on care and caregiving.1 For example, while many of the essays in this collection explore the representation of care in media texts and practices, we also wish to highlight understandings of the instrumental use and reception of media as playing an important role in the routines, intimacies and practices of care, whether this is in public institutions, such as the care home, or in the private bedrooms of individuals. Our ultimate aim is to foreground the value of an interdisciplinary approach to care and the media: to demonstrate through a variety of different case studies how the research and theoretical understandings of care may be brought into a vital and productive dialogue with text-based and audience-focused research, originating within media, cultural and literary studies and enabling a new perspective on the relationship between care and media.

Why care and media? Care is central to daily life. Once largely invisible and marginalized by the academy, it has slowly become a topic of concern, often as a consequence of the impact of feminist thought, within and across a range of disciplines: nursing, education, sociology, social policy, philosophy and ethics (see, for example, Gilligan 1982; Feder Kittay 2003; Noddings 2003; Held 2006; Slote 2007; Mol 2008; Barnes 2012). Until relatively recently, the growth of medical humanities has tended to be dominated by social and historical research and literary-based approaches. Within this disciplinary context research has more often focused on histories of disease, institutions and policy as opposed to the practice or

Introduction: Discourses of Care and the Media

3

appearance of ‘care’ or caring, which is often perceived to be fleeting, ephemeral and operating within the ‘present tense’ of experience. As care is also often embodied (felt rather than seen, a performance rather than a record) this makes its history hard to trace, and accounts of care and caring often appear as anecdotal and insubstantial. Established work in medical humanities has perhaps found these performances and learnt routines of care and caring frustrating to capture, and existing approaches demonstrate a bias towards the significance of written narrative, evident, for example, in the foregrounding of the ‘life story’ – whether these are stories of specific diseases, biographies of eminent physicians, medical biographies of artists or individualized ‘illness narratives’ (Kleinman 1988; Frank 1995; Carel 2016; Couser 2018). More recently, however, there has been a push within medical humanities to expand a visually oriented approach, and work originating from art history, performance and dance studies, as well as film and television, has explored and constructed archives of visual and performance-based records – medical images, educational and public health films, as well as activist work online and accounts of performances in live theatrical spaces (Stafford 1991; Lebas 2011; Kuppers 2003, 2007; Cartwright 1995; Whatley, Waelde and Harmon 2018). Christian Bonah and Joël Danet’s contribution to this volume is a reflection of this wider approach and originates from research developed from Bonah and Anja Laukötter’s ERC-funded BodyCapital project, which has the ambitious aim of constructing and interrogating a visual archive of public health in the twentieth century.2 The work undertaken in this anthology therefore contributes to the widening field of medical humanities and develops a related body of research, which considers the representation of care within specific texts – novels, films, television programmes – which often feature as part of a wider discussion of stories and images about health care, illness, ageing or disability (see, for example, DeFalco 2016; Chivers 2011; Gorton 2016; Hall and Tweed 2019). Within this wider context, we would also note the significance of a science and technology studies approach to the ‘problem of care’ that attends to the assistive and instrumental uses of media forms – for example, where ‘new care and care systems technologies, such as telecare, smart technologies and smart homes shape and reshape the practices and spatialities of care’ (Schillmeier and Domènech 2010: 2). Section Two of the current collection (‘Technology, Care and Facilitation’) engages with this area by aligning assistive technologies more concretely with everyday media forms and artistic practices such as audio

4

Discourses of Care

description (Castle) and facilitated communication (Tweed). Questions of distance and proximity invoked by writing on care system technologies have been long-standing concerns within media studies and are also central to an additional related body of research on mediated compassion, acts of care and caring that are provoked (often controversially) via global and national charity and humanitarian campaigns and news reports (see, for example, Boltanski 2008; Chouliaraki 2006, 2012; Longmore 2016; Bruna Seu and Orgad 2017). Within media and cultural studies more specifically, care – understood outside of medical and clinical practice – has recently emerged as a concern, particularly in relation to the interest in neoliberal working practices and discourses of self-care, well-being and resilience. Scholarly responses to the juggernaut of reality television (in all its forms and guises) has often focused on the construction and promotion of the neoliberal self (see Ouellette and Hay’s seminal book Better Living through Reality TV (2008)). Within this area, feminist media scholars have engaged with different discourses of care and self-care through discussions, analyses and theories of emotion, emotional labour and affect (for example, Woods, Skeggs and Thumin 2009; Smit 2014; Kavka 2015). While Maggie Sweeney attends to the discourse of the ‘failure in the duty of care’ that accompanies stories of ‘children at risk’ in this collection, the duties and failures of public institutions such as the BBC have also been high on the radar in recent years, specifically following the Savile scandal that erupted in 2012 (and is outlined and discussed in Aust’s contribution to the collection). More recent controversies and a series of suicides by former reality television participants in the UK have reignited discussion of the ‘duty of care’ – in 2019 a panel at the Edinburgh International Television Festival was formed to debate this very notion.3 While it is an idea that might invoke traditions of paternalism, this is also a debate that would be usefully informed by closer attention to an ethics of care. Foregrounding care, within scholarship on television, for instance, would allow us to pay attention not only to the well-being of performers, participants and employees in television production, but also to value the often neglected terrain of the ‘public good’ of public service television, by which we mean the way in which ordinary programmes, routines and pleasures of television are experienced by audiences in their everyday lives. Although high-profile series such as Phoebe Waller-Bridge’s angst-ridden sitcom Fleabag (BBC, 2016–19) may have garnered critical and popular attention and provoked discussion as to the kinds of ‘care’ required to heal from the result of trauma and grief, other kinds of programming seemingly unrelated to medical issues or care as

Introduction: Discourses of Care and the Media

5

a therapeutic discourse – such as daytime television, children’s programming and soap opera – might also be seen as significant resources for the quotidian care and caring relationships of hundreds of thousands of viewers. As we have suggested elsewhere (Holdsworth and Lury 2016), these are viewers and readers who – despite their significance in terms of audience share – often appear to be of marginal importance or interest to producers, critics and cultural gatekeepers.4 Centring our discussion on care skews the popular and academic perception as to ‘who’ watches television – and why. Such analysis may also reveal the extent to which media studies has tended to neglect audiences whose status and interests may seem ‘peripheral’ to the imagined desires and needs of the normative audiovisual spectator/audience member – who is, in most instances, implicitly or explicitly understood as a young, healthy, prosperous and independent individual, without care needs or responsibilities. Paul Sutton’s chapter, which addresses the use of ordinary television – in this instance, the American network sitcom Frasier (NBC 1993–2004) – as part of the caring routine for his terminally ill partner, highlights this hugely significant but often overlooked value of media and media texts, particularly in what is sometimes considered by many to be the ‘less interesting’ aspects of the media, such as mainstream, broadcast television. The relationship between organizations and the individual informed by caring relations is also evident in the growth of research into the cultural industries, and specifically the attention paid to working practices, questions of precarity and structural inequalities. Feminist scholars have called attention to the impact and silencing of caring responsibilities as specifically gendered inequalities  – this time in the media and cultural industries – outlining how working cultures characterized by competition and precarity are ‘antithetical to caring responsibilities’ (Berridge 2019: 1; Gill 2014). This research, explicitly or not, is invested in a continuing (feminist) tradition of challenging the marginalization and invisibility of care by looking for the pleasures, challenges and consequences of caregiving and receiving in our everyday working lives. In understanding the multidimensionality of care as, in Marian Barnes’s terms, a way of conceptualizing relationships, a set of values and a practice (2012: 1), we argue that thinking and writing on and about care offers a rich framework for understanding and analysing media. We have therefore selected essays that not only consider images of care and caregiving but, following Barnes, look to uncover the ‘place of care’ (2012: 3) within media texts, practices and institutions. As an approach it asks us to consider the specificities of care (see Mol, Moser and Pols 2010: 7) in relation to media-informed contexts but is

6

Discourses of Care

also marked by a desire to think more holistically and conceptually about care and its relationship to media forms and practices.

Encoding, decoding care: Care, media and communication Care has been written, thought about and described in a variety of ways: as an act, an achievement verb, a practice, a disposition, an ethics, an aesthetics, a value or set of values or an attitude or affect. Our focus on media forms and practices is determined by our understanding of care as both a discourse and a form or mode of communication. Mol, Moser and Pols have discussed the difficulties of writing about care given that, as stated, the practice of care is often non-verbal and embodied. ‘The most difficult aspect of writing about care’, they argue, ‘is not finding which words to use, but dealing with the limits of using words at all. Care, after all, is not necessarily verbal’ (2010: 10). It is in the different modalities of care that we suggest analytical tools drawn from our own disciplines might help to capture the visual, aural, sensory, material, embodied and performative dimensions of care and how we recognize it. In taking a holistic approach our aim has been to try and highlight the possible place of care within different stages of the circuit of media production and consumption. For media studies scholars this is a well-defined approach that is indebted to Stuart Hall’s model of ‘encoding/decoding’. In his formative essay he challenged the linearity of existing models of communication to propose a four-stage and circular theory of communication. Hall describes a paradigm in which a ‘structure of relations’ is ‘produced and sustained through the articulation of linked but distinctive moments – production, circulation, distribution/consumption, reproduction’ (1999: 508). The advantages of this structure is the way in which it allows us to understand the interconnectedness of each stage of communication while also attending to the ‘distinctiveness’ of the ‘forms and conditions’ that characterize each moment in the circuit (1999: 508). In contrast to behavioural approaches within studies of media reception, Hall is keen to stress both the role of the audience-receiver in reproducing the decoded meaning and the potential for a ‘lack of fit between the codes’ (1999: 510). As Hall explains, ‘Once accomplished, the discourse must then be translated – transformed, again – into social practices if the circuit is to be both completed and effective. If no “meaning” is taken, there can be no “consumption”’ (1999: 508).

Introduction: Discourses of Care and the Media

7

By referring to Hall’s encoding-decoding model we want to align the notion of care as a ‘communicative exchange’ and note that, like the circulation of media texts, care relies on a system of relations similarly occupied by an ‘encoderproducer’ and ‘decoder-receiver’ (1999: 510). This pattern of exchange is particularly foregrounded in writing on the ethics of care. Joan Tronto’s ‘phases of caring’, for instance, allows us to understand the caring process of giving and receiving as a dynamic and not necessarily seamless exchange. Her systematic approach, like Hall’s encoding-decoding model, identifies four distinct phases: ‘caring about’ and ‘taking care of ’ refer to the recognition of an identified need and the assumption of a responsibility to meet that need (1993: 106); ‘caregiving’ and ‘care-receiving’ refer to the direct meeting of these care needs and the reception and response of the object of care (1993: 107). Feder Kittay, drawing on the writing of Noddings and Tronto, further consolidates the potential for an alliance between the encoding-decoding model and the circuit of care relations, as she identifies the importance of the ‘completion of care’. Understanding care as an ‘achievement verb’, she stresses the idea that actions intended as care require that the individual being cared for accepts them in order for the actions to be considered care (2014: 33). This mirrors Hall’s insistence on the agency of the individual audience member as the recipient of the media message and chimes with the encoding-decoding model’s rejection of the previously dominant model of media effects known as the ‘hypodermic needle theory’ (for origins of this theory and later developments see, for instance, Eadie and Goret (2013)). While this paradigm – and the associated ‘uses and gratifications’ model of media analysis – has undergone a degree of revision since Hall wrote his early paper, the vulnerability of certain audiences to the media (most often those audiences who are in receipt of care, such as children, allegedly susceptible teenagers and the elderly) remains a key concern in both popular and academic writing and debate (see, for example, Postman (1987) or the high-profile controversy surrounding the Netflix teen drama 13 Reasons Why (2017–)).5 Such an approach suggests that recent evaluations of the individual audience member as ‘media savvy’ and as an active ‘prosumer’ remain restricted, once again, to those individuals who fit the normative category of the media user as an independent, educated adult. By reflecting on the more nuanced understanding of care as a dynamic relationship rather than as something that is ‘done to’ the recipient of care, we can expose the way in which the study of media may equally continue to underestimate the needs and agency of audiences whose responses to and instrumental uses

8

Discourses of Care

of different media forms and technologies may be just as nuanced and just as complex as that of the ‘normative’ viewer. While we have also suggested elsewhere (Holdsworth 2015) the ways in which the dynamics of media producers and audiences might be mapped onto those of caregiver and receiver, in placing Hall’s model alongside that of Tronto’s there is the further possibility of understanding and analysing how care is communicated – encoded by practitioners, institutions and how these acts, values and messages of care can be decoded and reproduced by patients, users and audiences. What is significant in both Hall’s and Tronto’s models is the agency they afford the decoder-receiver by complicating the active/passive binary that dominates both discourses of care and discourses of media use. But neither process is seamless, and Hall’s paradigm also allows space for ‘the asymmetry between the codes of “source” and “receiver”’ (1999: 510) – where messages or acts of care can be misunderstood or can fail. As Hall writes, it is often the ‘lack of equivalence between the two sides’ of the exchange that produces ‘distortions’ and ‘misunderstandings’ (1999: 510). In relation to the media, this asymmetry may emerge as audiences resist or simply dislike texts and technologies that may have been intentionally designed for them; alternatively, they may also be persuaded to invest in ideologies and to consume in ways that are not in their best interest. While the recent development of personal and tailored media forms – a trend facilitated by the increasing availability of digital technologies and online platforms for accessing media – means that audiences may appear to have more control, individual audience members are still subject to increasingly obscure gatekeeping mechanisms such as the algorithms used by online media platforms including Facebook, Google and Netflix. In this context, we could argue that an illusion of choice in the era of streaming platforms is as real for the normative audience member as it is for the cared-for individual. We might think of the irritating cliché ‘Does she take sugar with her tea?’ – a question infamously asked of the carer rather than the cared-for tea drinker – as eerily similar to the supposedly helpful tips popping up in the side bar of a computer screen which suggest, ‘You liked that so you will like this’. In both instances, the individual (consumer or cared-for person) is presumed to be more effectively ‘known about’ by others rather than knowing for themselves. Following on from this, it is clear that in the contemporary era, another unfortunate alliance between media and care discourses is the increasing significance of, and dependence on, routine surveillance and a reliance on empirical data to identify needs and allocate resources, resulting in obscure, sometimes machine-led decisions that

Introduction: Discourses of Care and the Media

9

may have the unfortunate effect of the seemingly random cancellation of your favourite Netflix show, or which inform life-changing decisions made as to the best or most cost-effective ways of providing your individual care. These circuits of care and media are therefore not smooth or isolated and they still operate within a wider political and social context where some participants in this exchange have more power and greater agency than others. Indeed, challenges have already been made to the dyadic model of care (see Barnes et al. 2015) and, as Caduff writes, ‘there can be no circle because care is always exposed to the outside’ (2019: 799). This knowledge throws into relief another set of concerns surrounding the relationships between the public and the private and between the institution and the individual: thus, while care may often seem to be intimate, personal and private (a touch, a glance, a hand held, tea offered), it also always operates and is informed by social and political contexts (government funding, charity, institutional policy). Once again we can relate the operations and discourses of care to the experience of media, in that media forms (podcasts, television programmes, photographs), similarly, are received and used in intimate ways (transmitted directly into the ear via headphones, viewed from the sofa, archived in family albums) but are also, at the same time, generated and circulated through and by institutions, corporations and government bodies. While Hall’s model allows us to think through care as both a set of discourses and a communicative exchange, Tronto’s work enables us to not just envisage how similar the model of care and the circuits of media reception may be but reflect on the circuits of exchange between media producers and audiences as another practice of care. For example, Aust’s essay in this collection invites us to see and understand failures in communication within the production practices of the BBC as failures of care. And in questioning the place of care within a cultural institution such as the BBC we see an example of care operating beyond the realms of health and social care or the domestic and the family. Ambitiously, therefore, we would argue that this allows us to invert the perception of care as invisible, practised with and practised by individuals often seen as marginal to the mainstream of society (women, disabled people, children and elderly people) and re-frame care as central to all forms of everyday work and life. The conception of encoding/decoding care, then, invites us to reflect on the meanings and ethics of care at the levels of production, representation and reception – at each stage questioning the ways in which discourses of care translate and circulate – sometimes harmoniously, sometimes short-circuiting. We suggest that in foregrounding the structure of relations within both media

10

Discourses of Care

and care there is an opportunity not simply to reflect on how and where care happens and what it might look like (or to suggest what is good or bad care) but to widen and deepen the interpretation and value of media by determining the interdependencies and interactions of all kinds of care.

Summary of sections and chapters Divided into four sections, the anthology explores different ways in which media represent, articulate and enact modes of care and caring. The essays are brought together to reveal how different kinds of media representation, media technologies, media practices, institutions and ideologies are embedded in the understanding and value of care in our everyday lives. Our first section, ‘Media and end-of-life care’, brings together three essays that reflect on representations of death and dying alongside the use of media in end-of-life care. Helen Wheatley’s essay on television documentaries about assisted dying considers both representations of palliative care and, through interviews with key production personnel, the ethics of care within the production of these documentaries. Agnese Sile’s chapter similarly explores the intersections of representation and creative practice through her case study of photographer Briony Campbell’s The Dad Project (2009) – a documentation of the artist’s relationship with her terminally ill father. Both essays, though focused on different forms, consider the value of media from the perspective of production (public service broadcasting, photographic practice) as technologies of care and caregiving. The final essay in this section also reflects on television, and in this case specifically the television sitcom, as a technology of care from the perspective of the audience. Paul Sutton, in a moving authoethnographic account of the role of television in his relationship with his late wife, considers how vital the medium and their shared viewing practices became during her illness and following her death. In understanding media as a potential technology of care we wish to stress the multidimensionality of this possibility: that media use can be banal, everyday, incidental, as well as assistive or instrumental. The second section engages with established research on assistive technologies by bringing together essays that focus on the instrumental application of different media technologies. Anna Piccoli’s chapter explores the adoption and adaptation of existing media technologies and applications for people with visual impairments, arguing that the everyday nature and widespread use of

Introduction: Discourses of Care and the Media

11

technology such as smartphones render them care ‘relievers’. Continuing the focus on forms of adaptation Kerr Castle’s essay on audio description services for television programmes analyses the policy practices and services designed to make television texts accessible to visually impaired audiences. Moving from television to autobiography, Tweed critiques the often contested status of facilitated communication and autistic life writing, and opens up wider questions around attitudes towards neurodiversity, care and supported communication. The essays in this section are suggestive of the ways in which understanding assistive technologies – whether designed, adapted or co-opted – might offer not only better ways of living but importantly inclusion within and access to artistic and cultural spheres. What we also wish to emphasize is how these contributions and their sensitivity to the specificity of media forms illustrate the complexities, richness and restrictions of assistive texts and technologies. Castle and Tweed make a case for what we might think of as the art of access and assistance that, in turn, makes visible the care that is taken. In the third section we turn our attention to the relationships between media, education and care to offer three historical case studies of different screen pedagogies (educational films, public health films, and regional television and documentary) that have been used to construct images of and debates about health and social care. The essays brought together in this section reflect on the significant and sometimes controversial history of different media in communicating and promoting specific kinds of ‘care’ as directed by state bodies and charities to audiences of doctors, patients and the general public. Robert Hemmings offers an account and analysis of the cinematic techniques deployed by Arthur Hurst at war hospitals in Netley and Seale Hayne in the last years of the First World War. Situating Hurst’s films within the context of both contemporary military treatments of shell shock and contemporary popular film techniques and tropes, Hemmings presents a fascinating confluence of cinema and caregiving in which the medium is deployed as both an illustration of and instrumental to Hurst’s own practices of care. Bonah and Danet’s essay also focuses on the role and function of public health films in the twentieth century, drawing on research from the BodyCapital project. They identify three historical categories within a wide corpus of twentieth-century French health films. Outlining the emergence of what they call a ‘care-full’ cinema, they describe the filming practice and intent of medical educational films and videos from the 1950s to the 1990s. They demonstrate a clear shift from the more paternalistic approach of the 1950s (also discussed in Hemmings’s chapter) to a more reflective mode

12

Discourses of Care

in the 1970s, and finally to an emphasis on patient experience and agency in the late 1980s and early 1990s. Moving from the national to the regional, Ben Lamb’s chapter provides a comparative analysis of local educational media in North East England from 1964 to the 1990s, and particularly the representations and promotions of welfare services as the National Health Service increased its service provision. In doing so Lamb addresses the difficulties and limitations placed on mainstream media organizations in contrast to the possibilities of local, independent productions to impact upon local policy and community care. The often highly problematic nature of public health and medical film (Lebas 2018) is, in part, indicative of a central discourse of care that we felt should also be addressed in this collection. For example, as previously suggested, news agendas are often populated by stories about the failure of care in which discourses of harm, risk and neglect are foregrounded. While scholars have been at pains to try to define what care is – what it looks and feels like – what care is not is often easier to perceive. Feder Kittay writes that ‘bad care is not care at all’ (2014: 38) and while we agree with this sentiment, bad care is a key aspect within the discourses of care. The two essays in the fourth section, ‘Bad care’, attend to representations and practices of bad care as they appear in the tabloid press and in television news production. Once again, these essays both engage with the construction of stories about care (or failures of care in this case) and seek to unpick the complex ethics involved in telling such stories. Sweeney and Aust’s contributions address the way in which media forms (print journalism, television as institution and television news) may expose but also compound different instances in which there is evidence of ‘bad care’, including incremental neglect as well as sexual abuse. Both the chapters in this section focus on the way in which different media dramatize and deliberately – or inadvertently – confuse or mismanage public understanding as to how ‘failures of care’ emerge. As Sweeney suggests, there is often a perfect storm in the interaction between the way in which the tabloid media may obscure what might otherwise be understood as systematic failures of care – mistakes and tragic incidents resulting through under-funding and subsequent lack of resources for social workers – by establishing a media template that sensationalizes and individualizes specific incidences of news-worthy ‘bad care’. By focusing on relatively rare and catastrophic incidents of child death or child murder, tabloid coverage of these instances of ‘bad care’ by parents and carers commonly obscures systematic failures of society such as poverty and gender violence and depends, instead,

Introduction: Discourses of Care and the Media

13

on the vilification of individual social workers, at once blaming them for not ‘taking enough care’ while at other times resenting the interference of what is otherwise termed, in a derogatory manner, the ‘nanny state’. Both Sweeney and Aust recognize how discourses of care are often supplemented or replaced by the discourses of risk and hindered by industrial practices. Aust, for instance, argues how the individualism, competition and protectionism of television news production runs counter to an ethics of care and the stated aims of the BBC. The duties of care that are exercised in the documentaries explored by Wheatley at the start of the collection and that remain at the heart of a particular conception of public service broadcasting are notably absent in the Aust’s study of the BBC’s handling of the McAlpine and Savile scandals. Aust also reminds us of the collaborative nature of media production that might run counter to the behaviours and practices of blame shifting that could be harnessed to reimagine a slower and more ‘caring’ culture of news production. The ambiguities and ambivalences of care, its loves and labours, are central to the final section of the anthology. The collection concludes with a powerful and moving treatise/intervention from the artist Andrew Kötting, in which he reflects on the collaborative, personal and artistic journey he has made with his daughter Eden, who has Joubert syndrome. This intervention, featuring reflections, art and photographs, is followed by Amy Holdsworth’s short essay on Kötting’s work and films, specifically, his first film Gallivant (1996) and is intended as an example of what a collaborative aesthetic of care might look (and feel) like. Together, these collected essays explore the politics and ethics of care relationships alongside those of various media forms, their uses and contexts of production. In doing so, we hope to have emboldened the alliance that is forged through our interdisciplinary lens and offer a new approach to the concerns of illness, disability, dying, welfare and neglect. In what follows we explore how media texts and media practices are central to both the discourses of care and their circulation and suggest that they can also operate, in their own ways, as a mode of care and that they should be valued as such. While this edited collection has been another step in consolidating our own thinking on the relationships between media and care, it is certainly not intended to be exhaustive or conclusive. For instance, we recognize the geographical bias and subsequent limitations in a collection whose contributions centre solely on Western Europe, America and Australia. However, it is just that – another step and perhaps an invitation – that is itself informed by an ethos of care (and indeed academic

14

Discourses of Care

inquiry) as incremental and iterative. As Mols, Moser and Pols write, ‘[Care] does not dream up a world without lack. Not that it calls for cynicism either: care seeks to lighten what is heavy, and even if it fails it keeps on trying. Such, then, is what failure calls for in an ethics, or should we say an ethos, of care: try again, try something a bit different, be attentive’ (2010: 14).

Notes 1 Mills and Sterne’s afterword to the edited collection Disability Media Studies (2017) presents a strong case for the coming together of media studies and disability studies, outlining disciplinary biases that need challenging and approaches that need incorporating in future interdisciplinary work. Our own collection, however, focuses on questions of care but we have endeavoured to follow their principles. 2 For more on the BodyCapital project please consult the website: https://bodycapital. unistra.fr/. 3 In May 2019 the long-running morning talk show The Jeremy Kyle Show (ITV 2005–19) – infamous for its aggressive and combative host – was cancelled following the death of a guest – Steve Dymond – who took his own life one week after taking a lie detector test on the programme. Damian Collins MP (then chair of the Digital, Culture, Media and Sport select committee) argued that ‘there needs to be an independent review of the duty of care TV companies have to participants in reality TV shows’ (BBC News 2019a). This followed the deaths of two former residents of another of ITV’s flagship reality shows Love Island (2015–): Sophie Gradon in 2018 and Mike Thalassitis in March 2019. Olivia Petter, writing for The Independent reported that ‘such incidents are tragically nothing new. Since 1986, roughly 38 people are suspected to have died by suicide following appearances on reality TV programmes’ (Petter 2019). In light of these events, the UK’s Office of Communications (Ofcom) is set to propose new rules to ‘help protect the wellbeing of people’ taking part in television and radio programmes (Anon., 2019). 4 For example, the backlash received by the BBC in response to the decision to revoke free television licences for people over seventy-five offered an illuminating illustration of the perceived value of this particular demographic at once both marginalized and highlighted as specifically vulnerable (see BBC News 2019b). 5 Based on the young adult novel of the same name, 13 Reasons Why centres on the consequences of the poor mental health and suicide of a teenage girl and has been strongly critiqued for potentially glamourizing and trivializing mental health issues while purportedly bringing them to wider attention (Mumford 2019).

Introduction: Discourses of Care and the Media

15

References Anon (2019), ‘OFCOM: New rules proposed to protect TV participants’, in Zoom-In, Autumn 2019: 8–9. Barnes, M. (2012), Care in Everyday Life: An Ethic of Care in Practice, Bristol: Policy Press. Barnes, M., T. Brannelly, L. Ward and N. Ward, eds (2015), Ethics of Care: Critical Advances in International Perspective, Bristol: Policy Press. BBC News (2019a), ‘The Jeremy Kyle Show axed by ITV after death of guest’, 5 May. Available online: https​://ww​w.bbc​.co.u​k/new​s/ent​ertai​nment​-arts​-4827​9613 (accessed 17 August 2019). BBC News (2019b), ‘BBC must do more for older people after TV licence fee change, government says’, 11 June. Available online: https​://ww​w.bbc​.co.u​k/new​s/ent​ertai​ nment​-arts​-4859​4434 (accessed 17 August 2019). Berridge, S. (2019), ‘Mum’s the word: Public testimonials and gendered experiences of negotiating caring responsibilities with work in the film and television industries’, European Journal of Cultural Studies. Available online: https​://jo​urnal​s.sag​epub.​com/ d​oi/10​.1177​/1367​54941​98398​76 (accessed 12 May 2019). Boltanski, L. (2008), Distant Suffering: Morality, Media and Politics, Cambridge: Cambridge University Press. Bruna Seu, I. and S. Orgad (2017), Caring in Crisis: Humanitarianism, the Public and NGOS, London: Palgrave Macmillan. Caduff, C. (2019), ‘Hot Chocolate’, Critical Inquiry, 45: 787–803. Campbell, B. (2009), The Dad Project. Available at: http:​//www​.brio​nycam​pbell​.com/​ proje​cts/t​he-da​d-pro​ject/​. Carel, H. (2016), Phenomenology of Illness, Oxford: Oxford University Press. Cartwright, L. (1995), Screening the Body: Tracing Medicine’s Visual Culture, Minneapolis: University of Minnesota Press. Chivers, S. (2011), The Silvering Screen: Old Age and Disability in Cinema, Toronto: University of Toronto Press. Chouliaraki, L. (2006), The Spectatorship of Suffering, London: Sage. Chouliaraki, L. (2012), The Ironic Spectator: Solidarity in the age of Post-Humanism, London: Polity Press. Couser, G. T. (2018), ‘Illness, disability, and ethical life writing’, CLCWeb: Comparative Literature and Culture, 20 (5). Available online: https://doi.org/10.7771/14814374.3482 (accessed 28 August 2019). DeFalco, A. (2016), Imagining Care: Responsibility, Dependency, and Canadian Literature, Toronto: University of Toronto Press. Eadie, W. F and R. Goret (2013) ‘Theories and models of communication: Foundations and heritage’, in P. J. Schulz (ed), Theories and Models of Communication, Berlin: De Gruyter Mouton.

16

Discourses of Care

Feder Kittay, E. (2003), The Subject of Care: Feminist Perspectives on Dependency, Totowa, NJ: Rowman and Littlefield. Feder Kittay, E. (2014), ‘The completion of care – with implications for a duty to receive care graciously’, in A. M. Gonzalez and C. Iffland (eds), Care Professions and Globalization, New York: Palgrave. Frank, A. (1995), The Wounded Storyteller, Chicago: University of Chicago Press. Gill, R. (2014), ‘Unspeakable inequalities: Post feminism, entrepreneurial subjectivity and the repudiation of sexism among cultural workers’, Social Politics, 21 (4): 509–28. Gilligan, C. (1982), In a Different Voice: Psychological Theory and Women’s Development, Cambridge: Harvard University Press. Gorton, K. (2016), ‘“Walking the line between saint and sinner”: Care and Nurse Jackie’, Critical Studies in Television, 11 (2): 151–63. Hall, A. and H. Tweed (2019), ‘Curating care: Creativity, women’s work, and the Carers UK archive’, The Journal of Contemporary Archival Studies, 6 (24). Available online: https​://el​ischo​lar.l​ibrar​y.yal​e.edu​/jcas​/vol6​/iss1​/24 (accessed 28 August 2019). Hall, S. ([1973] 1999), ‘Encoding/decoding’, in S. During (ed), The Cultural Studies Reader, 2nd edn, 507–17, London: Routledge. Held, V. (2006), The Ethics of Care: Personal, Political and Global, Oxford: Oxford University Press. Holdsworth, A. (2015), ‘Something special: Care, pre-school television and the dis/ abled child’, Journal of Popular Television, 3 (2): 163–78. Holdsworth, A. and K. Lury (2016), ‘Growing up and growing old with television: Peripheral viewers and the centrality of care’, Screen, 57 (2): 184–96. Kavka, M. (2015), ‘Sex on the shore: Care and the ethics of license in Jersey Shore’, Camera Obscura, 30 (1(88)): 101–27. Kleinman, A. (1988), The Illness Narratives: Suffering, Healing and the Human Condition, New York: Basic Books. Kuppers, P. (2003), Disability and Contemporary Performance, London: Routledge. Kuppers, P. (2007), The Scar of Visibility: Medical Performances and Contemporary Art, Minneapolis: University of Minnesota Press. Lebas, E. (2011), Forgotten Futures: British Municipal Cinema 1920–1980, London: Black Dog Publishing. Lebas, E. (2018), ‘“Where there’s life, there’s soap”: Municipal public health films and municipal cinema in Britain between the wars’, in C. Bonah, D. Cantor and Anja Laukötter (eds), Health Education Films in the Twentieth Century, 225–44, New York: University of Rochester Press. Longmore, P. (2016), Telethons: Spectacle, Disability and the Business of Charity, New York: OUP USA. Mills, M. and J. Sterne (2017), ‘Afterword II: Dismediation – Three proposals, six tactics’, in E. Ellcessor and B. Kirkpatrick (eds), Disability Media Studies, 365–78, New York: New York University Press.

Introduction: Discourses of Care and the Media

17

Mol, A. (2008), The Logic of Care: Health and the Problem of Patient Choice, London: Routledge. Mol, A., I. Moser and J. Pols, eds (2010), Care in Practice: On Tinkering in Clinics, Homes and Farms, Bielefeld: Transcript. Mumford, G. (2019) ‘Netflix Cuts Controversial Suicide Scene from 13 Reasons Why’, The Guardian, 16 July. Available online: https​://ww​w.the​guard​ian.c​om/tv​-and-​ radio​/2019​/jul/​16/ne​tflix​-cuts​-cont​rover​sial-​suici​de-sc​ene-f​rom-1​3-rea​sons-​why (accessed 6 December 2019). Noddings, N. (2003), Caring: A Feminine Approach to Ethics and Moral Education, Berkeley: University of California Press. Ouellette, L. and J. Hay (2008), Better Living Through Reality TV: Television and PostWelfare Citizenship, Malden, MA: Blackwell. Petter, O. (2019) ‘Love Island: The terrible toll of life as a reality star after the cameras are turned off ’, The Independent, 9 July. Available online: https​://ww​w.ind​epend​ent.c​ o.uk/​life-​style​/love​-isla​nd-re​ality​-tv-m​ental​-heal​th-su​icide​-mike​-thal​assit​is-so​phie-​ grado​n-itv​2-a89​36256​.html​ (accessed 17 August 2019). Postman, N. (1987), Amusing Ourselves to Death, new edn., London: Methuen. Schillmeier, M. and M. Domènech, eds (2010), New Technologies and Emerging Spaces of Care, London: Routledge. Slote, M. (2007), The Ethics of Care and Empathy, London: Routledge. Smit, A. (2014), ‘Care, shame, and intimacy: Reconsidering the pleasures of plastic surgery reality television’, Camera Obscura, 29 (2 (86)): 59–83. Stafford, B. (1991), Body Criticism: Imaging the Unseen in Enlightenment Arts and Sciences, Cambridge, MA: MIT Press. Tronto, J. C. (1993), Moral Boundaries: A Political Argument for an Ethic of Care, London: Routledge. Whatley, S., C. Waelde and S. Harmon, eds (2018), Dance, Disability and the Law, London: Intellect. Wood, H., B. Skeggs and N. Thumin (2009), ‘“It’s just sad”: Affect, judgement, and emotional labour in “reality” television viewing’, in S. Gillis and J. Hollows (eds), Feminism, Domesticity, and Popular Culture, 135–50, London: Routledge.

18

Section One

Media and end-of-life care

20 

1

Signs of care Assisted suicide on television Helen Wheatley

It has become something of a critical commonplace to acknowledge that death is currently everywhere and nowhere. It is nowhere in the sense that from Geoffrey Gorer’s 1955 article ‘The Pornography of Death’ onwards, cultural theorists have acknowledged the receding of death from everyday life practices; dying most often takes place behind the closed doors of the hospital or hospice rather than at home or in the centre of the community as it once did. On the other hand, it is everywhere in the sense that death, and, subsequently, death studies, has had a very visible presence in all forms of art and culture, and television is no exception (although death’s presence on television has been less thoroughly explored than in other cultural forms such as film or literary studies. See, for example, Clarke Dillman (2014), McIlwain (2004), Weber (2011) and Wheatley (forthcoming)). Television offers us representations of all forms of death and dying from the graphically spectacular deaths of crime and medical drama, to encounters with death on an international (and sometimes mass) scale via television news, to the sometimes quiet and more contemplative deaths of the soap opera or serious documentary series. As I argue elsewhere (Wheatley, forthcoming), and as Charlton D. McIlwain has proposed in relation to death and the media in the US context (2004), television works through a whole variety of death-related issues and positions for its audience. We can certainly see this in the case of the topic of assisted dying. For many people in the UK, their only encounter with the ethical, philosophical and moral debates surrounding assisted dying, as well as its practicalities and processes, will have been via television. An encounter with these issues and debates may have come via news coverage of the failed 2015 Assisted Dying Bill, or through the BBC1 drama A Short Stay in Switzerland

22

Discourses of Care

(tx. 25/1/09), or while following the ongoing soap storylines of Jackson Walsh in Emmerdale (ITV Yorkshire, 1972–) in 2011 and Hayley Cropper in Coronation Street (Granada for ITV, 1960–) in 2014, or even via the sitcom Way to Go (BBC3, 2013), with its homemade ‘McFlurry of Death’, made by the hapless owners of a makeshift assisted dying business. Just as Fran McInerney has argued that the topic of ‘requested death’ has been very present in films but not film studies (2014), and Leen Van Brussel has explored the way that print media have treated the topic of assisted dying (2014), so we might see this chapter as bringing to critical light a subject which is already very present on television itself. I was first familiarized with the processes and debates surrounding assisted dying via a number of documentaries made for the BBC in the UK and by other (mainly public service) broadcasters around the world: The Suicide Tourist (PBS, 2010); Terry Pratchett: Choosing to Die (BBC2, 2011); Dignitas – la mort sur ordonnance (RTS, 2011); How to Die in Oregon (HBO, 2011); Four Corners: My Own Choice (ABC, 2013); How to Die: Simon’s Choice (BBC2, 2016). These documentaries are the focus of this chapter, both in its analysis of them and in its discussion of the debates and discourses around care, death and dying that have surrounded their production and broadcast, drawing on interviews with some of their key programme makers in the UK. It proposes that we see a number of caring relationships on, through, and in relation to these documentaries, beyond their revelation of the relationship between medical practitioner and patient – we see the programme makers’ care for their subjects, the necessary self-care of the production team working on these programmes and, crucially, care for the television audience evidenced by the assisted dying documentary. This research shows us the importance of television (particularly in a public service context, as in the UK and elsewhere) in working through and worrying at pressing social concerns of the day, as well as in raising awareness about broader moral, emotional and ethical issues around death and dying. This is evidence of television’s ongoing role as a medium of care, as it explores these issues and provokes dialogue, debate, conversation and thought about all kinds of dying experiences. This shows that the attitude of care towards the television audience isn’t lost in the era of post-broadcast television. The term ‘post-broadcast’ television refers here to programming that is not broadcast as part of a schedule or ‘flow’ of programmes on ‘regular’ television, but rather is streamed, downloaded or watched online outside of a planned schedule. This aligns with Holdsworth and Lury’s position that ‘television in certain instances … is a “caring technology”’ (2016: 190), but whereas their focus is on the ‘small

Signs of Care

23

pleasures’ of television in its caring role (particularly pleasures produced for the very young and very old), I suggest that television’s provision of information about, and exposure to, that which frightens, upsets or worries us can also be seen as providing care for a broad range of viewers. Of course, a counter argument might accuse such programmes of sensationalism and exploitation, or even propose that television works to ‘make safe’ or comfortable difficult subjects. This chapter aims to provide a riposte to such arguments.

Caring through and in television production In Vivian Sobchack’s seminal 1984 essay on the representation of death in the documentary film, she explores the filming of both violent and natural death. Of the latter, she argues that the ‘humane stare’ of the documentarist’s camera may ‘settle, rather than fix itself [on the dying subject] … inscribing the intimacy and respect and sympathy it feels with those who die in its vision’ (1984: 297). As the adjectives in the latter part of this quotation suggest, she defines the relationship between film-maker and subject in the filming of natural death as an implicitly caring one and explores the ethical positions of those filming death. Bill Nichols qualifies Sobchack’s classification of the humane gaze of the documentarist’s camera on the subject dying a ‘natural death’ by arguing that it only ‘occurs in cases where death cannot be prevented by intervention’ (1991: 86). Obviously, there are some shifts to make from Sobchack’s and Nichols’s discussions when considering the television documentary about assisted dying. These are not unpreventable deaths (though the inevitable ‘natural’ deaths of the subjects are closer at hand than most), and the filming of these deaths and the subjects moving towards them focuses on ‘intimacy and respect and sympathy’ but is implicitly different from the filming of natural death as outlined by Nichols and Sobchack. Implications of complicity with the act of assisted suicide have to be carefully worked through by the film-maker, and the act of consent taking is subsequently repeatedly highlighted within the documentaries at hand. This is also, of course, not film, but television, a medium which potentially intensifies the intimacies of the death documentary by bringing them up close to the viewer in a domestic reception context: via television, it is possible to stumble upon the intimate image of someone taking their life as part of an evening’s regular television viewing. This already intimate subgenre of documentary film-making thus shifts into an increased sense of intimacy through the implicitly close

24

Discourses of Care

relationship between the viewer and the text that is inscribed into television programming. There is a growing field of critical literature that examines film and television as sites for the exploration of ethics and ethical looking relations. As Downing and Saxton argue, ‘While there is no established body of theory that might be described as “ethical gaze theory”, the idea that ethics is an optics through which we habitually view and conceptualise is a persuasive one’ (2010: 2) (see also Watson and Arp (2011) and Aaron (2007)). Downing and Saxton thus draw on Michele Aaron’s suggestion that ‘looking in cinema is never innocent or neutral but always complicit and thus ethically implicated’ (ibid., 4). This is an argument that will be familiar to anyone who has studied documentary and, particularly, Bill Nichols’s work on the film-maker’s ethical or moral point of view. When looking at the assisted dying documentary, Nichols’s delineation of axiographics, ‘an attempt to explore the implantation of values in the configuration of space, in the construction of a gaze, and in the relation of the observer to the observed’ (1991: 78), is particularly significant. When the topic of a documentary is the planned death of its central subject, understanding the ethical questions surrounding consent is critical, and the film or programme maker must construct an axiographics of compassionate, caring neutrality that reflects the position of the medical caregivers that act in relation to the subject. Therefore, the first ‘sign of care’ which takes place off-camera with the production team and then, repeatedly, on camera with the medical team in every one of the documentaries at hand is the taking of consent. The Swiss documentary Dignitas: la mort sur ordonnance begins with a shot outside the Dignitas facility in Zurich where a voice can be heard asking whether something will taste bitter. We are therefore aware straightaway that this documentary begins in medias res, or rather, at the end of the process of seeking an assisted death, though for a brief moment we are held outside that scene. As an edit then takes us inside the facility where a woman lies on a bed, next to an older woman who is kneeling beside her, holding a drink, the first woman jokily says, ‘Ask me if I want to die’, to which the second answers, ‘Yes, of course’. There then follows a stream of questions that check the woman’s identity and her desire to take her own life (she is the French theorist, translator and author Michèle Causse). These are all presented in the same static medium shot, the camera lingering on this careful round of consent taking. This moment, perhaps shocking in its procedural everydayness in the taking of consent for such an extraordinary action, is discussed here not because it is unusual but because it is typical and indicative of any number of pivotal

Signs of Care

25

scenes in the assisted dying documentary. Dignitas: la mort sur ordonnance thus begins with this act of consent taking, positioning the camera in a neutral, intimate, but not intrusive, position. While Causse’s jollity makes this scene tonally unusual in some ways, the camera’s steady taking in of this exchange of consent demonstrates its centrality in this subgenre of documentary filmmaking. The self-conscious opening of Dignitas: la mort sur ordonnance also speaks to the fact that a number of theorists, including Calvin Pryluck (2005) and Andrew Belsey (1992), have noted: the congruence of media and medical ethics around the taking of consent. While what is depicted on screen is the taking of medical consent, there is an implicit story being told here about the subject’s consent to being part of a documentary. When Sir Terry Pratchett asks, at the beginning of the BBC documentary Terry Pratchett: Choosing to Die, ‘How do you guarantee sincere consent [in an assisted death] and what happens to those that get left behind?’, he might equally be discussing the consent of the documentary subject, as well as that of those requesting an assisted death. In the UK context, the programme makers I interviewed who had made documentaries on this subject talked about the importance of the BBC’s Producer Guidelines, and how crucial they were in ensuring that contributors were treated honestly, with respect, and with care, particularly around the taking of informed consent, and in relation to their care for the subjects’ families following the production and broadcast of their documentaries and the death of their loved ones. Charlie Russell, director of Terry Pratchett: Choosing to Die, argued that in all documentaries the taking of consent is careful and considered, but that they were more mindful about consent taking in this context. Rowan Deacon, director of How to Die: Simon’s Choice, also discussed how the process of consent taking began with extended conversations with the BBC’s legal team and their head of editorial policy, before the production team even approached their subjects. It is subsequently clear that these processes are then reflected in scenes of extended consent taking in the documentaries themselves and that these scenes can be understood as signs of care within the programme. There are many ways in which care for the documentary subjects are in evidence in these programmes, but this chapter focuses on two themes to explore the concept of care in more detail: first, the idea of the giving of a voice to the dying subject as a form of care and, secondly, the care of the subject’s family in the documentaries and after their production, and care in and through their bereavement. In relation to this first theme, we can see the production of

26

Discourses of Care

the assisted dying documentary as part of the palliative care of the dying subject, in which they (and their family and friends) work through their thoughts and feelings about their approaching death and the process of assisted dying on camera. These documentaries are made in the unusual situation in which their participants are acutely aware of the ‘timetable’ of their death, and their direct address to camera in a ‘confessional’ mode allows them to explore their feelings about this. For example, in How to Die: Simon’s Choice, Simon discusses the progressive worsening of his health – he has motor neurone disease – in a series of interviews and self-filmed voxpops throughout the documentary. He talks about the emotional impact of falling over while playing with his dog, finishing with the admission, ‘The clock is ticking, it’s going to the next phase’, and later interviews speak of his worsening mood as he struggles to cope with his loss of independence. Simon’s wife, Debbie, also works through her feelings about the choices Simon is making about his death on camera; when discussing the earlier death of her daughter from cancer, and the palliative care that led up to her death, she speaks directly to the camera, while sitting in her car: Losing a child, there’s nothing worse than that but there was something … more natural? I don’t know. In that … there was still hope with my daughter, right up to the end … and I guess there’s a bit of anger in me that, you know, why can’t Simon just do that? You know, your life closes in when you get ill, I think, but we still really enjoyed watching telly together, or eating together, and it’s those little things that become so … . So, maybe, there’s a bit of me that thinks, ‘Oh, why can’t you, you know, do that?’

This language, the sense of grief and uncertainty that it conveys, suggests that Debbie is actively working through her thoughts and feelings about Simon’s death on camera. Naomi Richards (2013) and Emma Wilson have both explored the idea of film-making as offering a kind of palliation, with Wilson seeing it as ‘a space of working out, of anticipatory engagement with mortality, with our own death and the deaths of others, and with the consuming emotions that attach to loss’ (2012: 13). It is important to acknowledge, therefore, that while assisted dying often stands in opposition to palliative care in the debates that surround it, palliation actually begins at an earlier point for the subject of the assisted dying documentary, and programme making becomes a key aspect of this. Allowing the subject to speak and giving voice to their affective experiences of approaching an assisted death is particularly highlighted in How to Die: Simon’s Choice, in which the loss of Simon Binner’s voice to the motor neurone disease

Signs of Care

27

that is killing him becomes a major thematic component of the documentary. The documentary begins with the sound of Simon’s voice-over footage of his funeral (or what we will come to understand as his voice, performed by the voice-over actor Simon Nock, who reads Simon’s words from a letter to his wife, Debbie). This immediately draws our attention to the documentary’s ability to allow Simon to speak, even beyond the time of his death. During the early parts of the documentary we see him frustratedly struggle to talk and then to communicate with his family using an electronic talker, and later we see him involved in the selection of the actor who will provide his voice-over throughout the documentary; these moments, and the sequences when we see the voice-over artist reading Simon’s words in a darkened recording studio, self-consciously draw our attention to the way in which being involved in the documentary gives a voice to the dying subject who is going through the process of losing theirs, first through ill health and then through death. Indeed, we see this right at the end of Simon’s life, where he uses his iPhone to play a message to his family at the moment of his death. As his friends and family gather round his bedside, Simon is seen playing a sound file on his phone, resting it on his stomach and smiling at those around him as they listen: Hi, Debbie. It’s Simon here. I’ve loved you very, very much, Debbie. I haven’t deserved you, or Hannah or Zoe. Such loving and caring young ladies and I’ve been such a grumpy Gruffalo for much of the time. … The one blessing of a slow decline is that we’ve had time to speak about things over ten long months, not like losing me in a car smash. We’ve really said everything that needs to be said.

His words in this moment speak of being able to say all there is to be said, of he and Debbie having been given the opportunity to work through their feelings for each other and what was happening to Simon via a series of conversations. In this sequence in the documentary, the use of the voice-over artist to speak Simon’s words was added in post-production; on the sound clip Simon played on his phone in Zurich, his daughters read the letter but because the sound quality was poor, and to give an added coherence to the use of the voice-over, it was dubbed over later. This is a poignant moment that highlights what John Ellis means when he says that ‘documentary characters speak knowing that they will be heard and act knowing that they will be seen’, concluding that ‘documentary material should therefore be seen as a series of attempted communications’ (2012: 103). Here, the programme becomes inextricably linked with Simon’s own attempts to both speak and to mark his passing through letters and recordings, a kind

28

Discourses of Care

of public memento mori or what Naomi Richards calls ‘a prophylactic against death’ (2013: 196). When the recording comes to an end, and the voice-over artist stops speaking, Simon releases the medication which will kill him and the screen cuts to black to register his dying. Following this, the documentary cuts to the darkened studio where Simon Nock, the voice-over artist, removes his headphones and leaves the booth he has been working in. In this place, the static pause on an empty room draws attention to the importance of speaking and being heard in the documentary: for Simon, participating in the programme has clearly given him a voice at a crucial moment in his life and death. Many of these conversations would, of course, have taken place without a camera crew present, but through the documentary Simon and Debbie have to talk through thought processes, disagreements and feelings for the camera, increasing communication between them and capturing each stage of this process for posterity. Rowan Deacon, the programme’s director, discussed watching this scene in the postedit screening with Debbie and remembered Debbie’s friend who attended the screening with her asking whether she was sure that she wanted to show this intensely private moment, to which Debbie replied that this moment ‘wasn’t just for me it was for the cameras as well … he was always public, you know’. In an interview, Deacon explicitly discussed the giving of a voice to her subject when talking about the casting of Simon Binner and his desire to take part in the programme: Rowan Deacon [RD]: Simon was up for it straight away. Simon was the kind of person – he’d been on telly before, a dating show in the ’90s – he was just one of those people who was an exhibitionist, but in the nicest possible way. … So immediately he thought, this was wonderful that there was this documentary crew that wanted to document his story. He also had only just been diagnosed with the worst thing you could imagine being diagnosed with, and … Simon’s reasoning, as I later understood it … [was] that he felt somehow it dignified a really undignified [situation]. … He felt it documented and … stopped him from kind of shrinking. He wasn’t the kind of person who would shrink into the corner and be the quiet person, that was what he feared, because losing his voice; it was the worst diagnosis for a man who was so exuberant and outgoing and I think it kind of filled a hole that having his body and his voice took away [made], if that makes sense … Helen Wheatley [HW]: I guess there’s lots of reasons why people might get involved from being a kind of a naturally brilliant exhibitionist person, to maybe being in a campaigning position – ‘this is important and people should

Signs of Care

29

know about this’. And/or also a sense of creating some sort of memorial for themselves. Did you get a sense of any of those reasons for participating in Simon’s case? RD: Probably the memorial, probably the legacy. … He definitely didn’t do it for campaigning reasons, I think. I don’t think he thought this film will change the law. I think he thought … HW: It was a lot more personal than that … RD: Yeah, I think he thought, the process of having my story documented is going to help me, I’m going through hell. … And I think he thought this is a good thing. This is a positive thing. … So I think it was a … almost like a psychological decision for him. HW: Taking hold of the situation … RD: Taking control, yeah maybe it was about that.

Similarly, when discussing one of the participants in Terry Pratchett: Choosing to Die, Charlie Russell stated, ‘When it finally got very close to the day that [Peter Smedley] would kill himself, I just said, “Should we be there? Do you want us to come along?” and Peter, I think, had been thinking about it for a while, he just implicitly got it and wanted his death to mean something.’ For Russell and his subject then, making this death public, bringing it to light and giving the dying subject a voice, was also extremely important, but for different reasons. These documentaries allow their subjects to very consciously speak ‘beyond the grave’, either in an emotional register that allows them to speak directly to their family via television (as in Simon’s Choice) or by giving a voice to their position on the perceived injustices of the current policies on assisted dying and therefore addressing policy makers and voters, as Peter does, even if obliquely, in Terry Pratchett: Choosing to Die. As suggested above, these documentaries demonstrate an axiographics of intimacy in the conveyance of a caring or humane gaze on the dying subject and their friends and family. This demonstrates Bill Nichols’s identification of an ‘emphasis on the continuing proximity of camera and subject despite the encroachment of death and the direct acknowledgement of a human relationship between filmmaker and subject through dialogue and commentary’ through the humane gaze (1991: 86). This intimacy is manifest in a number of ways in these television documentaries, and not only through footage shot specifically for the programme: for example, montages of home-movie footage, that ‘death-denying technology’ par excellence according to Sandra M. Gilbert (2006: 219–10), reveal intimate moments which capture life and death. How to Die: Simon’s Choice ends

30

Discourses of Care

with home-movie footage of Simon dancing joyfully around his kitchen with his dog, for example. This interpolation of these found images, sometimes also supplied via montage sequences of family photographs as in poignant moments in The Suicide Tourist, creates a sense of intimacy in these documentaries, making the audience privy to private moments recorded for posterity in a variety of different contexts. There is also an image repertoire of shots that seek to affectively convey moments of intimacy whether that be through close-ups of pained and/ or crying faces speaking directly to camera, or, particularly poignantly, shots of hands clasped, stroking or letting go in moments that convey a deep sense of grief or loss. Agnese Sile’s discussion of the photograph of hands in Briony Campbell’s The Dad Project as well as the image of the hand on the arm that is evoked in both Paul Sutton’s and Andrew Kötting’s contributions to this collection also attest to the power of this image. We also see it here, in Terry Pratchett: Choosing to Die, as Peter Smedley says, ‘My wife is very good at putting me to sleep by just stroking my hand’. In this moment we focus on a close-up of a tender, habitual, familiar act, just after he has taken the draft that will kill him. The image of hands entwined are the emblem of care here and in other documentaries, such as the PBS documentary The Suicide Tourist from 2010, and the shots that convey this to the audience at these poignant moments seek to represent a sense of care. Sometimes, care for viewer and the subject is also conveyed by the removal of the intimate image, as in the cut to black at the end of Simon Binner’s life, or in the removal of the camera (but not the sound recording equipment) to outside the house at the end of Cody’s life in the HBO documentary How to Die in Oregon. However, more often care for viewer and subject is expressed in images and moments of extreme intimacy in the assisted dying documentary. What was most striking in the interviews with Rowan Deacon and Charlie Russell were the stories the documentarists told about their experience of caring both for their subjects and for themselves during the film-making process. There is a brief moment that indicated this in How to Die: Simon’s Choice where, unusually for this documentary, Rowan Deacon’s voice is heard asking Simon from off-camera ‘Are you scared?’ at his final ‘going-away’ party. This follows a failed suicide attempt at home, and an unexpected acceleration of the time frame of Simon’s death. We hear in this moment both her concern for Simon, and also an element of personal fear and trepidation (we wonder if she is also scared, upset or worried?). This brings to mind the work of David Hesmondhalgh and Sarah Baker (2008) and Laura Grindstaff on the production of the reality talent show and the talk show, respectively, and the latter’s proposal that television producers

Signs of Care

31

‘find themselves performing emotional labour while simultaneously struggling to distance themselves from its emotional effects, to make it just another aspect of the job’ (2002: 133). This emotional work, and the self-care needed to cope with it, is also expressed in Bill Nicholls’s acknowledgement that ‘witnessing the act of dying … places an acute emotional and ethical strain on the documentary filmmaker’ (1991: 83). We see, during the course of these documentaries, filmmakers caring for the dying and the bereaved, ceremonially marking deaths and helping to produce a lasting record of lives, and manifesting a general sense of care and compassion in the process of producing of a documentary. For example, I was carefully told by both programme makers about the post-production care of the remaining friends and families of the documentary subjects, and, specifically, the emotional labour of the post-edit screening for the bereaved which both documentarists found difficult in different ways. Both of the programme makers I interviewed talked about the production process as emotionally gruelling for them and their team from the very outset of conducting initial interviews. Rowan Deacon talked about the importance of sharing and debriefing on this work with a small team, and about its emotional impact: HW: How do you prepare for the initial work? You must have had lots of quite gruelling conversations. RD: Yeah, they were, they were actually … . So [these] were gruelling and they were long meetings and you often felt quite responsible for them having handed over all this information. And it was good that it was me and Lizzie [Kempton, associate producer], because we did a lot of talking about it afterwards, I think talking about it afterwards helped. … It would have been harder on our own … ; I honestly think that.

Similarly, Charlie Russell discussed the fact that on their documentary, this early interviewing had been done by a junior assistant producer, Rosie Marshall. Russell talked about the ways in which she was supported in this work: Charlie Russell [CR]: Rosie … probably spent about six months talking to people on the phone and pretty much crying every day and Craig would support her in the office, and I would ring her up and keep talking it through and keep trying to help her. And she, because she’d done that first phone call she then went to meet people and she shot little reccy tapes with people and just went very slowly. And surprisingly a huge number of people were … up for filming if they were in that situation [of planning an assisted death], but you never knew really if they were.

32

Discourses of Care HW: You said that during this process of meeting people and setting up interviews, you had to support Rosie through doing that. Can you tell me a little more about in what ways you did this and what sort of support she needed? CR: The way that I work and a way a lot of people work in documentaries is not big teams, and that’s sort of why we like it, and I think it’s quite good to have someone who isn’t me, be the first point of call and it will often be a woman, because they’re more empathetic, if we’re going to generalize, you know just good with people essentially. And Rosie was all that and very driven and determined and knew what it would entail and wanted to do it. And it was sort of just important for me to be on the end of a phone, or we met in London a couple of times, we went down to meet Terry, and just sort of talking it through, and I’m sort of being the counsellor to her and she’s being the counsellor to them. In the same way that therapists you know have their own therapists. You’re just trying to give an outlet so they can just talk it through.

There are obviously some revealing statements here about the emotional labour of documentary production, and the ways in which this labour is gendered, in particular. While Russell’s account is still a story about collaboration and being part of a ‘caring team’, the initial gruelling work of lengthy interviews with the dying and the grieving is assigned to a young woman on the basis of her age and gender (as well as her particular interpersonal skills). Both film-makers drew attention to the need to care for themselves and their production team throughout all stages of this process, not just in the early research process. For example, they were also very eloquent on the ‘emotional’ fallout at the end of production: RD: I think we finished the edit … and in the edit as well we were like got to make the story work, and you know, we’ve got to make this good, [this] became the distancing thing. And then we had a cut of the film and finally … there’s a scene at the end where Simon does his little funny dancing with his dog Ralph and I sat in bed watching, because I had to check through before we sent it finally to the BBC, and I just wept. And I just wept and wept and wept, and it was the first time that I had … I think because the film was done … I mean the grief, because Simon was amazing and we were in his life for short time but quite an intense time.

Charlie Russell talked at length about how therapy (for him) had been built into the programme-making process, after a previous experience of doing this

Signs of Care

33

following Looking for Dad (2008), his earlier BBC2 documentary about his father dying. Finally, as well as caring for the production team during the process of filming, and taking care of the dying subject as they work through their feelings about their approaching death, a clear duty of care for the bereaved is in evidence in all of these documentaries and was spoken about at length by their programme makers. We see those involved in the production of the documentary taking care of grieving friends and families on screen. This is particularly notable in Terry Pratchett: Choosing to Die, where the presence on camera of Pratchett and his assistant Rob Wilkins during Peter Smedley’s death, and the implicit presence off-screen of Charlie Russell behind the camera, pushes us to think about their relationship to Peter’s widow, Christine, in this moment. Discussing the filming of this moment, Russell again points to the caring work of those making the film: CR: I was just very conscious of trying to maintain myself as physically small as possible when it was happening so that his last memories weren’t a camera in his face and her memories of her husband dying wasn’t us getting in there and getting the shot. … I think they wanted us there and I think Christine wanted some friendly Brits who she knew and … You know, once he died we put all the equipment down and left the room and when the time was right I think Rob, Terry’s assistant, got out a bottle of brandy and we all had a drink and toasted him with Christine and just gave Christine hugs essentially. And just, well, just really it was amazing they let us be there but also by that point we all knew her. … Everyone was in tears. … They were just an extraordinary couple so you just couldn’t help but be in love with them and be desperately sad for what was happening.

As has already been explored, the assisted dying documentary also acts as a memento mori of a life and a death for the bereaved. In How to Die: Simon’s Choice, Debbie is interviewed just before the closing scenes of the documentary, in a scene in which she acknowledges that she can remember very little of her trip to Zurich for Simon’s death. Here we become aware of the potential power of the television programme to capture this moment for the person wracked and muddled by grief. Rowan Deacon spoke of her ongoing caring relationship with Debbie and the rest of Simon’s family, both during the process of editing the film, as discussed above, but also following the broadcast: RD: We were very fond of Simon, but I can’t pretend to be grieving in the way that his friends and family have lost him, but … I felt at one stage before Debbie

34

Discourses of Care had seen the film, I think an element of guilt. I thought, because I think I knew then that the film was a strong film, and I think there was part of me of course that was pleased we’d made a strong film but that I’d stolen something from Debbie. I felt that her husband’s death had allowed me to make a strong film and that was something … and actually I had to talk that through a lot, there was a kind of guilt, and I think that was why I was so anxious that she like it and the film was a positive thing. And that’s ongoing. Debbie is still connected with us and that feeling of whether she wants to forget about the film or remember it … you know, it doesn’t just stop because the production has stopped.

Caring for the viewer: The persistence of television as cultural forum Ultimately, the caring work of the assisted dying documentary is evidence of the persistence of television as a medium that seeks to work through life – and death – for its viewers, and, therefore, of the continuing relevance of Newcomb and Hirsch’s idea of television as cultural forum (1983). The ‘bringing to light’ of this form of death might be seen as an act of care for the viewer themselves, or what Brian Winston calls ‘the rhetoric of the public right to know’ (2000: 128). Just as Jostein Gripsrud (2004), Milly Buonanno (2008), Graeme Turner (2009) and Helen Piper (2016) all argue that ideas of cultural responsibility and public service remain critical for broadcasters and viewers in the era of ‘post broadcast’ television, so these documentaries might be seen as concrete examples of this. The rhetoric of ‘working through’ death has been applied to the presentation of death in almost all forms of art and culture but seems particularly apt when applied to television which literally brings the sight of death back into our homes. The structures of broadcast television, and particularly the interstitial material that surrounds each documentary, emphasizes the act of care for the viewer in relation to assisted dying and the illnesses that lead people towards it. For example, we are directed to expect upset by the voice-over announcement that precedes How to Die, which dubs it ‘an emotional documentary … with scenes some viewers may find upsetting’. At the end of the broadcast we are offered the opportunity to take part in an Open University debate about assisted dying and are also directed towards the BBC’s Action Line and information about motor neurone disease and bereavement. Rowan Deacon argued that following the

Signs of Care

35

broadcast of her documentary there was ‘a sort of national conversation [about assisted dying] grounded in lived experiences’ which took place across the press and social media, and which she saw as evidence of the continuing ‘power of television’ to have a public impact. But what do we do about the fact that these programmes are accessible outside of their broadcast flow in the post-broadcast moment, or that we might not necessarily encounter these documentaries in their initial broadcast context and surrounded by the interstitial mechanics of care? It is possible to access all the documentaries discussed in this chapter either online, via YouTube or Vimeo, or on commercially available DVD. Milly Buonanno, drawing on Horace Newcomb’s work, conceptualizes a ‘shift in the symbolic meaning and the central function of the television medium [in the post-broadcast era]: from forum to library’ (2008: 70) and we see this reflected in the Australian ABC documentary Four Corners: My Own Choice where the subject and his mother discuss how important watching television documentaries via YouTube had been in relation to his decision to seek an assisted death. While what we see here is evidence of Newcomb’s ‘library’ in the ways that this mother and son view programmes online, the documentaries viewed by this mother and son on YouTube are not made for that platform or library but rather are the remnants, the afterlife, of public service, broadcast television as cultural forum. This subgenre thus transcends its national relevance via its online circulation but continues to perform a ‘civic’ or emotional duty online. It was clear that the programme makers I spoke to who had made films about assisted dying felt both a duty of care to their subjects and a duty to the public ‘right to know’, and that they were aware that both of these things continued beyond the initial point of broadcast. This discourse of necessity, the establishment and nurturing of a series of caring relationships around the broadcast text, is clearly in evidence. Whether informally, via the online circulation of documentaries, or as part of more formal programme of education and training about death and bereavement, television’s capacity to convey care for and understanding of those facing an assisted death should not be underestimated.

References Aaron, M. (2007), Spectatorship: The Power of Looking On, London: Wallflower. Belsey, A. (1992), ‘Privacy, publicity and politics’, in A. Belsey and R. Chadwick (eds), Ethical Issues in Journalism and the Media, 77–92, London and New York: Routledge.

36

Discourses of Care

Buonanno, M. (2008), The Age of Television: Experiences and Theories, trans., Jennifer Radice, Bristol: Intellect. Clarke Dillman, J. (2014), Women and Death in Film, Television and News: Dead But Not Gone, London: Palgrave Macmillan. Downing, L. and L. Saxton (2010), Film and Ethics: Foreclosed Encounters, London and New York: Routledge. Ellis, J. (2012), Documentary: Witness and Self-Revelation, London and New York: Routledge. Gilbert, S. M. (2006), Death’s Door: Modern Dying and the Ways We Grieve, London: W.W. Norton. Gorer, G. (1955), ‘The pornography of death’, Encounter, 5: 49–52. Grindstaff, L. (2002), The Money Shot: Trash, Class, and the Making of TV Talk Shows, Chicago: University of Chicago Press. Gripsrud, J. (2004), ‘Broadcast television: The chances of its survival in a digital age’, in L. Spigel and J. Olsson (eds), Television after TV: Essays on a Medium in Transition, 210–23, Durham, NC: Duke University Press. Hesmondhalgh, D and S. Baker (2008), ‘Creative work and emotional labour in the television industry’, Theory, Culture and Society, 25 (7–8): 97–118. Holdsworth, A. and K. Lury (2016), ‘Growing up and growing old with television: Peripheral viewers and the centrality of care’, Screen, 57 (2): 184–96. McIlwain, C. D. (2004), When Death Goes Pop: Death, Media and the Remaking of Community, Oxford: Peter Lang. McInerney, F. (2014), ‘Ladies’ choice? Requested death in film’, in N. Carpentier and L. van Brussel (eds), The Social Construction of Death: Interdisciplinary Perspectives, 92–113, London: Palgrave Macmillan. Newcomb, H. M. and P. M. Hirsch (1983), ‘Television as cultural forum: Implications for research’, Quarterly Review of Film Studies, 8 (3): 45–55. Nichols, B. (1991), Representing Reality, Bloomington and Indianapolis: Indiana University Press. Piper, H. (2016), ‘Broadcast drama and the problem of television aesthetics: Home, nation, universe’, Screen, 57 (2): 163–83. Pryluck, C. (2005), ‘Ultimately we are all outsiders: The ethics of documentary filming’, in A. Rosenthal and J. Corner (eds), New Challenges for Documentary, 194–208, Manchester: Manchester University Press. Richards, N. (2013), ‘Rosetta Life: Using film to create “bearable fictions” of people’s experiences of life-limiting illness’, in M. Aaron (ed), Envisaging Death: Visual Culture and Dying, 190–204, Newcastle Upon Tyne: Cambridge Scholars Publishing. Sobchack, V. (1984), ‘Inscribing ethical space: Ten propositions on death, representation, and documentary’, Quarterly Review of Film Studies, 9 (4): 283–300. Turner, G. (2009), ‘Television and the nation: Does this matter any more?’ in G. Turner and J. Tay (eds), Television Studies after TV: Understanding Television in the PostBroadcast Era, 54–64, London and New York: Routledge.

Signs of Care

37

Van Brussel, L. (2014), ‘A discourse-theoretical approach to death and dying’, in N. Carpentier and L. van Brussel (eds), The Social Construction of Death: Interdisciplinary Perspectives, 13–33, London: Palgrave Macmillan. Watson, J. C. and R. Arp (2011), What’s Good on TV? Understanding Ethics through Television, Chichester: Wiley-Blackwell. Weber, T. (2011), Drop Dead Gorgeous: Representations of Corpses in American TV Shows, Frankfurt: Campus Verlag. Wheatley, H. (forthcoming), Television/Death, Edinburgh: Edinburgh University Press. Wilson, E. (2012), Love, Mortality and the Moving Image, London: Palgrave Macmillan. Winston, B. (2000), Lies, Damn Lies and Documentaries, London: BFI Publishing.

2

Gestures of care in Briony Campbell’s The Dad Project Agnese Sile

In his paper ‘Care: In Search of a Health Agenda’, medical anthropologist Arthur Kleinman writes, ‘Art, music, dance, and theatrical performance can not only be therapies, they also represent our capacity to empathise with, endure, work through the human tasks and relations of care, and share cathartic experiences’ (2015: 241). Kleinman argues that creative works not only mirror social practices and disclose meanings which are embedded within specific cultural landscapes but also perform functions of empathy, compassion and caregiving. In the present chapter, I will explore the relationship between photography and care and argue that photography as a non-verbal form of communication has an ability to transmit meaningful messages that facilitate and gesture care. Kleinman’s philosophical perspectives on care provide a guiding framework for this study. Photographs are not only objects but also products of performance and collaboration. They are ‘structured and structuring spaces’ (Bell 2002: 9) that allow the participants of the photographic act – the photographer, the photographed subject and the viewer – to engage with each other and to create new meanings (Sile 2018: 362). Philosopher Vilém Flusser argues that through physical movement with the camera, with an intention ‘to fix a changing situation’ (2014: 75), the photographer is also ‘to the same extent, […] changed by it’ (2014: 82). Photography, therefore, is relational and responsive and involves a performative dimension. This resonates with Nel Noddings’s notion of ethical caring, which is ‘rooted in receptivity, relatedness, and responsiveness’ (2003: 2). Furthermore, Kleinman argues that ‘[c]aregiving reciprocity is itself a performance that has aesthetic importance’ (2015: 241), and that care as a moral gesture ‘can be beautiful’ (2015: 241). However, what does care mean

Gestures of Care in Briony Campbell’s The Dad Project

39

in the context of the photographic act? How can photography represent care practice and can it do so without romanticizing actions? In order to explore some of these questions I have chosen to analyse London-based photographer Briony Campbell’s The Dad Project (2009) which documents, in photographs and film, the last six months of Campbell’s father’s life as he was dying from bile duct cancer. Campbell in this project reveals an intimate personal world, and uses photography as a tool to commemorate, externalize and explore her relationship with her Father. The photographs act as a memory and a means to capture and extend the moments of togetherness and Campbell’s father’s existence as he undergoes a variety of physical and psychological changes and moves towards death. The project not only opens up a dialogue between a daughter and a father but also questions the roles of the photographer/ daughter and subject/father: ‘Perhaps I’d proved (to myself or my parents? I’m not sure which was the necessity) that I was a daughter before a photographer’ (Campbell 2009). Campbell’s doubts regarding her role as a daughter and the demands associated with that role open up questions of expectations, the ethics of documenting an intimate experience and the meaning of care. Care here encompasses not only Campbell’s father’s living body but also his dead body as this project includes post-mortem photographs. Arthur W. Frank writes that ‘[i]n death, care must continue’ (2008: 124) and Campbell’s images, as I will illustrate further in my analysis, perform the functions of care. The project attempts to find ways of dealing with death, dying and the grief of losing the other through a form of photography. In an exploration of Campbell’s work this chapter examines a series of themes that emerge through the relationship between photographic narrative, storytelling, subjectivity and care. It contends that the practice of being vigilant and watchful, activities linked with photographic act, can be interpreted as gestures of care. It also considers the ways in which Campbell, in The Dad Project, opens herself up to the otherness of her father, and concludes by reflecting on the relationship between photography, memory and bereavement.

Dialogic space in The Dad Project The project was initiated while Campbell was pursuing her master’s in documentary photography in the London College of Communication. Her father, David Campbell, died in 2009 at the age of sixty-five. Born in Chicago, he was a

40

Discourses of Care

clinical psychologist by profession and known for his pioneering work in family therapy in the UK (Barratt 2009). Campbell presented her work at the final show of her degree three months after her father’s death. The photographs were made public on the web and in 2011 published in a limited-edition monograph of a hundred copies – The Dad Project (a year on) – by the independent contemporary photography publishing house Oodee. In this chapter I analyse the photographs and the text that are publicly available on the artist’s website. There are thirty-three colour images presented on Campbell’s website and a short film Saying Goodbye with My Camera that was created in collaboration with The Guardian Weekend Magazine in 2010. The photographs in The Dad Project are captioned; Campbell’s written text accompanies each photograph and in this way ‘anchors’ (Barthes 1985: 30) the message. The brief texts underneath the images reveal a glimpse into a father/daughter relationship, David Campbell’s character and the family’s grief at his demise. Portraits of David by himself and with other family members are juxtaposed with landscapes and close-ups of bottles, seemingly trivial details, such as David’s breakfast request form from the Marie Curie hospice, and photographs of leaves and flowers. The images are not dated. The colour scheme of the photographic sequence and seasonal changes that can be observed in the outdoor shots give indications of the passing of time. In the first image the trees are bare, revealing that it is early spring. Another photograph that appears towards the end of the photographic essay depicts the sun shining through auburn-coloured foliage: ‘Today we knew he would die soon. I went outside and looked at the sky while we waited for the ambulance. It was perfectly beautiful’ (Campbell 2009). These seasonal images act here not as means of interruption of a general narrative or even a respite but as a way to reconfirm life’s continuous circle. From the beginning of the project, it was intended to be a collaboration between Campbell and her father. His response to Campbell’s suggestion to photographically document the last months of their shared experiences was as follows: When you first asked me about doing this project, I thought about what it would mean for me to share my feelings with you, and whether it was going to make you feel sad or upset, or whether it was going to make me feel sad or upset. And then I thought more about what it would mean to you, and I thought, this is an opportunity for me to learn a little bit more about you as my daughter, and more about what it will mean for you to be without a dad someday, sooner or later. And the upper-most thing in my mind is to try to be a good dad to you for

Gestures of Care in Briony Campbell’s The Dad Project

41

as long as possible, and to understand what it means to be a good dad to you. (Campbell 2014: 240)

David Campbell’s thoughts disclose the reciprocal nature of this project. By shifting focus from himself to Campbell and back to himself, he is emphasizing that it is not only for Campbell to record and document her father’s demise to cancer but also for David to look back at himself and at Campbell in this process. The photographic act here is an exchange of meanings and moral values between father and daughter. Kleinman describes caregiving as a ‘moral, emotional, and practical exchange’ in which ‘the gift of the person’s human need for assistance to reduce pain and alleviate suffering and her responses to the care provided is reciprocated by the return gift of acknowledging, affirming, and responding in equally human ways’ (2015: 240). Although photographic acts do not necessarily reduce physical pain, they are, however, a process that validates the other person’s life and allows those involved to structure, share and reflect on experiences. The project discloses multilayered stories in which Campbell’s standpoint or viewpoint as a photographer is not fixed and one dimensional. Campbell writes, ‘Every documentary photographer is seeking to reveal truth, but telling another’s story truthfully is essentially impossible. If I chose to tell the story of losing my dad I would be retelling our story; my dad and me – therefore it would be true’ (2014: 242). Campbell here challenges and questions the notion of experience as ‘the origin of knowledge, the vision of the individual subject’ (Scott 1991: 777). The feminist historian Joan W. Scott points out that experience itself is ‘constructed’, a mediated relationship ‘between words and things’ that it ‘is at once always already an interpretation and something that needs to be interpreted. What counts as experience is neither self-evident nor straightforward; it is always contested, and always therefore political’ (1991: 797). Instead of claiming the project to be about either her or father’s ‘experience’, Campbell opens herself up to the otherness of her father. She is not imposing her emotions on David, but rather opening a dialogic space between them. Susan Sontag in her seminal book On Photography writes, ‘So far as we care about the subject photographed, we expect the photographer to be an extremely discreet presence’ (1979: 133). For Sontag, ‘any trace of the personal vision of whoever is behind the camera interferes with the primary demand on the photograph: that it record, diagnose, inform’ (1979: 133). In this project the position of the photographer is closer to John Berger’s thoughts on the role. In his essay ‘Understanding a Photograph’, Berger emphasizes that the role of the

42

Discourses of Care

photographer is not only to witness and record but to provide integrity ‘towards and with’ those who are suffering (1980: 60). This is particularly evident in The Dad Project in an image entitled, ‘Family Portrait’, which is shot through a window (Figure 2.1). Campbell’s father is sitting in a room with his back against the window; his paleness draws attention to his illness. He is gesticulating and talking to a younger man. In the reflection of the window we can also see Campbell in the middle of the photograph looking through a camera. The movement of her hand echoes her father’s, therefore artistically linking them together. Campbell’s composition is reminiscent here of Arthur Batut’s. His technique of superimposing glass negatives of several portraits held out an alluring possibility of creating a portrait of a person who does not exist but nevertheless possesses common features of a family or a community (Hamilton and Hargreaves 2001: 74–5; 98–100). The quality of Batut’s dream-like layered and haunting images resembles Campbell’s aesthetics, with the superimposition, the reversal of spatial relations and the fact that what is seen inside belongs to the outside and the other way round, and the play of negative/positive space and framing, all add to this imaginary, complex and multifaceted scene. The observer of the image somehow feels trapped in between; we are both looking at and through Campbell’s camera. This uneasy position situates not only Campbell and her family but also the observer within the image through reflections. Bracha L. Ettinger’s concept of aesthetic wit(h)nessing here becomes particularly relevant (1999); the term ‘witness’ – sometimes also referred to as an observer, a person

Figure 2.1  Courtesy of Briony Campbell, The Dad Project, www.brionycampbell.com.

Gestures of Care in Briony Campbell’s The Dad Project

43

who sees, sometimes as a bystander, sometimes as a spectator – emphasizes the distant and even theatrical nature of the relationship. The meaning of witness here expands to being with, therefore encompassing the possibility of being beside and becoming ‘a keeper of historical memory for the injured other’ (Pollock 2010: 831). The viewer is simultaneously a witness and ‘wit(h)ness’ in this encounter. The photograph opens up ‘a threshold between now and then’ and creates ‘a shared borderspace that acknowledges the gap between different things, times and places’ (Pollock 2010: 838; original emphasis). This aesthetic encounter brings the viewer, the photographer and the photographic subject into close proximity with one another and to the possibility of recognizing each other’s suffering. The project that started as a daughter’s and father’s mutual enquiry, with exposure, also becomes an opening to a public dialogue about encounters with sickness and the death of the other that is made visible through photographic practice. The project attempts to construct a narrative out of fragments of interactions and of experiences that the viewer may never understand. Losing a parent is an experience that most of us will share at some stage. Although Campbell in her project communicates a universal ‘experience’, it is also a deeply personal story that rejects any assimilation; it leaves a gap and a distance between the story and one’s experience. Arthur W. Frank calls this a ‘broken narrative’,1 a narrative in which ‘the nature of the experience does not, cannot, and never will coalesce into a cohesive whole’ (2008: 122). Frank claims that the narrative is broken because it is told from ‘within liminal spaces’ (2008: 122; original emphasis), using Victor W. Turner’s anthropological term ‘liminality’: The attributes of liminality or of liminal personae (‘threshold people’) are necessarily ambiguous, since this condition and these persons elude or slip through the network of classifications that normally locate states and positions in cultural space. Liminal entities are neither here nor there; they are betwixt and between the positions assigned and arrayed by law, custom, convention, and ceremonial. […] liminality, is frequently likened to death, to being in the womb, to invisibility, to darkness, to bisexuality, to the wilderness, and to an eclipse of the sun or moon. (Turner 2011: 95; original emphasis)

The liminality of death has a particular relevance in Campbell’s project. The space that Campbell and her father inhabits that is ‘neither here nor there’ is a treacherous space. Through photographs and text, Campbell invites the viewer and the reader to enter their space – ‘a zone where life is profoundly insecure’

44

Discourses of Care

(Frank 2008: 122–3). However, as Frank claims, ‘the story holds us, making it safe enough – not entirely safe but compelling – to follow where it leads’ (Frank 2008: 123). Viewers of this project ‘remain on the edges of an experience they can never comprehend’ (Frank 2008: 123). The encounter with illness and the death of the other fails to be fully represented and communicated in any affirmative way.

Gestures of care Under an abstract image of what looks like a splashed drink or more convincingly dried blood, the text explains that before the photograph was taken, her father was carrying a glass of energy milkshake (Figure 2.2). He had lost his balance and the glass smashed on the floor. After I’d cleared up the broken glass (all the time thinking ‘that was a photo – I’m missing the story’) I managed to take a picture. Although I was slightly disappointed by my initial hesitance, on reflection I realized that what I hadn’t captured was as relevant to our story as what I had. This photograph felt like a turning point. The fact that I couldn’t shoot everything was the story. And so I became more comfortable with telling it. (Campbell 2014: 244)

Roland Barthes writes that ‘strictly traumatic photographs are rare’ (1985: 19) and the ones that do show deeply disturbing scenes deny any value: ‘at the

Figure 2.2  Courtesy of Briony Campbell, The Dad Project.

Gestures of Care in Briony Campbell’s The Dad Project

45

limit no verbal categorization can have any hold over the process instituting its signification’ (1985: 19). Through this deliberate delay of the representation of the accident, the image of the aftermath signifies David Campbell’s deterioration and fragility even more powerfully. Although, as the text explains, the splash on the floor is from an energy milkshake, the colour and pattern evoke an image of blood and ‘blood in itself is a symbol of violence’ (Bataille 2012: 54). Through this association, the photograph invokes a sense of urgency, makes the witness feel alert, worried and attentive which in itself points towards the gesture of care. Here we are not presented with ‘a reality from which we are sheltered’ (Barthes 1985: 33) but rather with ‘an image that is neither pure and simple “life” nor an imaginary. Neither a “realist” nor a “fictional” phantasm, but life presented or offered in its evidence’ (Nancy and Conley 1999: 78; original emphasis). By evidence, Jean-Luc Nancy in this context means not a testimony, presence or a sign but rather a movement and ‘a passage’ (Nancy and Conley 1999: 87). The image does not represent what has been (Barthes 1985: 33) as the event has been altered through Campbell’s gesture of care, editing, focus and arrangement of the scene. The image: ‘each time, each opens a world and precedes himself in it (s’y précède) is not pregiven (donnée toute faite) (as are those of dreams, phantasms or bad films): it is to be invented, cut and edited’ (Nancy and Conley 1999: 82). The image constructs the experience, or rather reveals that experience itself is not a reliable source of knowledge (Scott 1991). Campbell’s role as a photographer is a response to her relationship with David Campbell. Being a daughter as well as a photographer here manifests as a practice, a labour, therefore resisting a tendency to romanticize the relationship and view care as a sentiment or an inherent quality of mind. This view confirms Virginia Held’s (2006) and Sarah Ruddick’s notion of care: ‘As much as care is labor, it is also relationship – […] caring labor is intrinsically relational. The work is constituted in and through the relation of those who give and receive care’ (1998: 13–14). The photographic process acts here as care in which ‘attentiveness, responsibility, responsiveness and the commitment to see issues from different perspectives’ (Sevenhuijsen 1998: 83) play equally important roles. As Nancy argues in his essay ‘On Evidence: “Life and Nothing More”, by Abbas Kiarostami’: ‘The image is not a projection of a subject, it’s neither its “representation”, not its “phantasm”: but it is this outside of the world where the gaze loses itself in order to find itself as gaze (regard), that is, first and foremost as respect (égard) for what is there, for what takes place and continues to take place’ (Nancy and Conley 1999: 80–1; original emphasis). For Nancy, to look and to

46

Discourses of Care

gaze point towards the visual characteristic of sight but also towards having regard for, to take care of and to guard. ‘To guard’ here is precisely this watching and waiting, being vigilant and protecting one from what is lying ahead. This tension highlights Campbell’s dual role as daughter and photographer, both of which embody concern and care for her father and their relationship. By losing her father, Campbell’s role as daughter for her father also ceases to exist. The photographic act here offers a possibility not only to be with and to share a space but to record her own position in relation to her father.

Radical alterity in the father/daughter dyad For Emmanuel Lévinas, the father recognizes himself in his son who is a stranger and discovers himself in this relationship also as a stranger. In this entanglement the father changes but also survives as himself (Baraitser 2008: 37). Lévinas emphasizes particularly the father–son dyad, based on strangeness within sameness. Yet can the father discover himself in his daughter, who possesses a more radical otherness than a son (Baraitser 2008: 37)? Can the female body with its sexual difference and with its ‘cosmic and social equilibrium, in relation to the environment’, ‘the different means of exchange with others’ (Irigaray 2007: 110), with its cyclical rather than linear time, stand for the promise of continuity and infinity? The role traditionally assigned to daughters by their fathers or by daughters themselves often emphasizes a fragile and dependent disposition, ranging from ‘daddy’s little girl’ to a distant and occasionally resentful relationship between them. What Campbell’s father affirms by agreeing to participate in this project is radical. Through their reciprocity and their mutual agreement, the project stands as a way ‘to understand what it means to be a good dad to you’ (Campbell 2014: 240) and what it means to be ‘a daughter before a photographer’ (2009). Through this project they attempt to regain a voice of this limited communication between fathers and daughters and of a relationship that for a long time has been neglected. In a self-portrait, Campbell is photographed reclining in a transferrable hospital bed. She is looking straight at the camera in a contemplative way (Figure 2.3). The text underneath the image explains thus: ‘Dad left the hospital bed in the living room empty, when he returned to the hospice. I think the others found it strange that I slept in it’ (2009). The metal bed frame here contrasts with the otherwise homely setting: a part of a picture

Gestures of Care in Briony Campbell’s The Dad Project

47

Figure 2.3  Courtesy of Briony Campbell, The Dad Project.

frame can be seen at the top of the photograph, and a pair of check slippers, supposedly her father’s, are placed by the bed, as well as flip flops and a pair of loafers. The soft lighting from the right side gives the image a calm and peaceful effect. Sleeping in her father’s bed provides the potential of being in close proximity to his body. The distinction between the healthy and the ill and the construction of ‘boundaries of the illness’ (Gilman 1988: 2) are questioned in this photograph. Sander L. Gilman writes that photographs of ill and otherwise marked bodies ‘become the space in which the anxieties are controlled’ (1988: 34). He asserts that the framing, the completeness and the ‘inherent limitation’ of an image ‘provide a distance analogous to the distance the observer desires from the “reality” of the illness portrayed’ (1988: 35). In contrast, David Campbell’s sickbed here is a fragile and intimate space which offers comfort and closeness. The last photograph of the photo essay is an image of Campbell dressed as her dad ‘Me as dad, 1986’ (Figure 2.4). Here she is posing as a small child wearing her father’s jacket, a scarf and a hat. Although looking ridiculous in the baggy clothes, the expression on her face embodies pride and contentment. Through staging and acting out, she is her father in this fantasy image. She is holding her father’s briefcase and standing in his shoes which are clearly far too large for her. An expression ‘to have some big shoes to fill’ comes to mind: although here she is posing in her childhood, the fact that the image appears at the end of the photo essay testifies that Campbell still finds

48

Discourses of Care

Figure 2.4  Courtesy of Briony Campbell, The Dad Project.

it challenging to fill her father’s shoes. This acting out and impersonation echoes Jo Spence’s Phototherapy series (in collaboration with Rosy Martin) (1985). In the project Spence dressed up and posed as her mother in order to understand the issues of another time, another generation, and to work out the strain in their relationship. These photographs served as a political statement, in which Spence in the guise of her mother attempted to expose and challenge existing stereotypes. Although Campbell through her photographs also investigates the relationship between herself and her ancestral other, in this case her father, and questions identity, these images are more subtle and rather seek to establish a possible genetic link between daughter and father.

Gestures of Care in Briony Campbell’s The Dad Project

49

Figure 2.5  Courtesy of Briony Campbell, The Dad Project.

Figure 2.6  Courtesy of Briony Campbell, The Dad Project.

In her project, Campbell attempts to connect familial history and traces of inheritance. Other images in the project seem to emphasize this search for inheritance – her father’s fallen hair collected on sellotape, spilt fluid stains and close-ups of her father’s skin. These resemble samples of bodily materials used for DNA testing (Figures 2.5 and 2.6). However, in relation to her father’s illness, the photographs of these fragments express Campbell’s need to capture her father’s presence and these moments of togetherness that are already slipping away.

50

Discourses of Care

The impossibility of closure The still life images, such as an empty glass on grass, or a stained milk bottle, play with the absence of Campbell’s father’s body and in a way represent loss and an unavoidable void. The photographs acknowledge the impossibility of complete retrieval and resolution, as Campbell (2009) testifies in the film: ‘This is a story with an ending, without an ending. It is a relationship I am still exploring.’ In her self-contradictory statement, Campbell is struggling between a story’s need to have closure and her own inability to present her experience as complete. One image in her project shows her father’s discoloured hand shortly after his death. The creased bed sheet reveals a urine catheter in the left corner of an image. The following image shows white bell-shaped flowers on a grey gradient background (Figures 2.7 and 2.8). The next one shows Campbell’s hand holding her deceased father’s hand; the text underneath it describes, ‘Me and Dad 25th August 2009’ (Figure 2.9). The contrast of life and death is particularly stark; here is an image that is difficult to view. Her father’s shrunken, wax-like, life-less skin in Campbell’s soft and warm hand looks radically other. Campbell has not tried to conceal her father’s death or to maintain the appearance of life. There is no beautification or adornment as seen in Gianni Cipriano’s project Where Beauty Softens Your Grief (2008) about Isaiah Owen’s funeral home. Lisa Cartwright writes, ‘The hand and the face are the two places we tend to look when we turn to the body to read its surface

Figure 2.7  Courtesy of Briony Campbell, The Dad Project.

Gestures of Care in Briony Campbell’s The Dad Project

51

Figure 2.8  Courtesy of Briony Campbell, The Dad Project.

Figure 2.9  Courtesy of Briony Campbell, The Dad Project.

for expression and feeling’ (2014: 265). Hands, more than any other part of human body, have inspired artists and photographers alike and are probably the second most photographed body part after the face. Hands depict meaning through gesture as well as through their texture. Here, Campbell’s and her father’s hands are interconnected. There is a need to hold and to support her father, even after his death. Her father’s hand is motionless and cold; only its shape has retained its surface familiarity. Although it feels dismembered and alien, it is no more alien than the flowers that are peeking out from the edge of

52

Discourses of Care

the photograph above. By mere presence in this sequence, they suggest ‘a form of ongoing life inextricably bound up with the very act of destruction’ (Caruth 1996: 55). Campbell writes: At the instant of Dad’s death my dual role felt absolutely concrete. There was no longer a separation [between daughter and photographer]. From deep inside in the cloud of tears provoked by his last breath, I wished everything could be captured; the sad and beautiful things my mum was saying; the stilted breathing of the people beside him, and the faces of the others aching in their separate spaces, the colour of his skin as it changed from my dad’s to a corpse’s. I wanted all the details recorded and revealed. (Campbell 2014: 248)

Death presents itself not through horror but as an experience that can be captured through the form of photography. Frank writes, ‘If the physical reality of death can be gazed upon clearly, there is nothing strange. It is the words, the extra thoughts, that risk confusing us’ (2008: 130). Campbell and her family can look at and touch David’s dead body because they see him, without prejudice, as he is. Emmanuelle Riva in Alain Resnais’s Hiroshima Mon Amour (1959) states, ‘I can say that I couldn’t feel the slightest difference between this dead body and mine. All I could find between this body and mine were obvious similarities’ (cited in Caruth 1996: 52). In the same way, Campbell erases any preset difference between a living and a dead body. In this photographic project Campbell is crossing this distance and bringing together life and death: ‘I see my life. Your death. My life goes on. Your death goes on’ (Hiroshima Mon Amour 1959). Campbell’s father does not remain alone; he is not photographed in isolation but in relation. The photographs immortalize his presence, even in his death. Our memories are vulnerable to loss. By materializing them in a photographic image, there is a promise to return to them and to pass these on to future generations. The photographs and the textual entries in The Dad Project act as an externalized memory. The memory of David Campbell survives, creating the paradox that despite biological death, a person can still exist. David Campbell exists and matters to those with whom his life has been interconnected and also to the readers and observers who have been touched by the images and text. In the absence of the physical body, photographs remind us of the intimacy that was there during the photographic act. For Arthur Kleinman, memories and the process of remembering is a continuation of caregiving practices (2016: 2596). He calls the caring for memories of those who had died ‘silent caring’, caring that allows us ‘to recreate meanings that sustain us, that help us to

Gestures of Care in Briony Campbell’s The Dad Project

53

endure’ (Kleinman 2016: 2597). This leads me to reflect on the importance of photographs in processes of grief and mourning.

Care and bereavement In Camera Lucida Barthes writes: I suffer, motionless. Cruel, sterile deficiency: I cannot transform my grief, I cannot let my gaze drift; no culture will help me utter this suffering which I experience entirely on the level of the image’s finitude (this is why, despite its codes, I cannot read a photograph): the Photograph – my Photograph – is without culture: when it is painful, nothing in it can transform grief into mourning. (2000: 90; original emphasis)

In this, Barthes denies photography’s ability to recast grief into mourning.2 His engagement with photographs ‘evokes the circularity of grief rather than the narrative process of mourning’ (Tanner 2006: 108). The static quality of a still image fails to return Barthes’s mother to him; instead her image haunts him like a hallucination: ‘I dream about her, I do not dream her’ (2000: 66). He views photographs from the position of the observer and the observed: ‘I possessed only two experiences: that of the observed subject of the subject observing’ (2000: 10). As Barthes confesses at the beginning of Camera Lucida, he has never engaged with the actual process of making a photographic image. In The Dad Project, photography is a process of living through grief. The presence of the other and their relationship to the other are embedded in the photographic act and not just in the materiality of an image. In Campbell’s recollections of the project, she asks, ‘My photography takes me away from grief to a happy place; it’s a positive and productive distraction. If Dad was my work, how could I escape?’ (2014: 241). Several pages later, Campbell provides an answer to her own question. Three months after her father’s death, Campbell had to present her work at the final show for her master’s degree course. Intensely producing and editing her photographs from the last six months was a way for her ‘to embrace my immediate grief ’ (2014: 249). She describes that in this process ‘the joy and the pain [were] so intertwined that I can’t tell the difference … and that is how it was’ (2014: 249). Grief here is lived as a postponement and through its continued presence. French historian Philippe Ariès writes, ‘It is up to society to help the bereaved go through these stages [of mourning], because he is not

54

Discourses of Care

strong enough to do it alone’ (1981: 581). The photographs and text in The Dad Project attempt to fill the void that follows the demise of the other. Through public exposure, Campbell also seeks a community – what Azoulay describes as ‘the citizenry of photography’ (2008) – in which mourning can take place. The lived experience of bereavement is not to ‘deprive, rob, strip, dispossess’ (OED), and leave one desolate and powerless, but instead a process that leads to transformation and the promise of ‘enriched wholeness’ (Frank 2008: 130). The process of producing and editing the photographs allows Campbell not only to extend the moments of togetherness with her father but also to arrange and rearrange the lived events into a coherent narrative ‘that makes sufficient sense of triumphs and failures alike to enable our safe passage through those life stages that remain to be lived’ (Kleinman 2016: 2597). This process constitutes an act of care.

Conclusion Caregiving is present in representational and functional forms in this project. The Dad Project is set within their family home; the portraits of Campbell’s father and the process of dying are mostly photographed within domestic space, rather than sterile institutional environment, such as a hospital, that adds to the existing disorientations that illness brings about (Frank 2011: 3). The photographs stand as evidence of Campbell’s and her other family members’ presence during David’s illness and his ultimate demise. In this project, the family prove and demonstrate their ability to provide comfort to David Campbell. The photography in this project also performs several functions: ‘watching over’ or being vigilant, caring, building a dialogue, reconstructing a voice, gesturing love and also to provide support to those left behind after the death of the other. The visual storytelling here is a form of care towards the other who is ill and dying and also as a form of self-care as photography supports Campbell through bereavement and the grieving process. Even though The Dad Project depicts events that took place several years ago, this cannot be considered as finished work. The photographs provide a continuity. Caregiving in this project is revealed as a complex, dynamic and multilayered concept. It involves attentiveness, responsiveness, acknowledgement of other person’s needs, as well as conflicting feelings, such as resentment and a sense of debt. Photography allows these emotions and cognitive processes to be expressed

Gestures of Care in Briony Campbell’s The Dad Project

55

and communicated. In this way, the photographic practice can be likened to listening and storytelling, and as Arthur W. Frank writes, ‘To attend to a person’s stories is to enable his or her self-discovery, and that is an act of care’ (2011: 1). Listening to a person’s stories involves being alert and open to otherness, and it creates tension between what one expects the other to say and what is said. Bearing witness and listening do not violate the other; rather, it is our obligation to bear witness and to listen. Similarly, photography as a collaborative practice involves uncertainty while it also creates bonds between those involved in the photographic act – the photographer, the subject and the viewer. The space that opens up in photography presents the possibility of dialogue and reflection that has a transformative potential to broaden our understandings of the experience of illness and the process of dying and care.

Notes 1 In The Wounded Storyteller, Arthur W. Frank lists three plots of illness narratives: restitution, chaos and quest narratives (1997). In an essay, entitled ‘Caring for the Dead: Broken Narratives of Internment’, Frank discusses another type of narrative – broken narrative. The narrative might be ‘damaged’ or broken as the person affected by illness or disability might not be able to construct a coherent story due to pain, injury or trauma. The narrative is then constructed by someone else on behalf of them. ‘In a broken narrative’, Frank writes, ‘emotions fracture the telling, and the listener or reader is left with fragments that do not form a whole, or the whole they form has holes in it’ (2008: 122). 2 As concepts grief and mourning overlap, I define here grief as an internalized emotional reaction to loss, a state and mourning as a process of overcoming the loss, often expressed through rituals. For in-depth insights and analysis of mourning, see Stephenson (1985).

References Ariès, P. (1981), The Hour of Our Death, New York: Penguin Books. Azoulay, A. (2008), The Civil Contract of Photography, New York and Cambridge, MA: Zone Books. Baraitser, L. (2008), Maternal Encounters: The Ethics of Interruption, 1st edn, Abingdon; New York: Routledge.

56

Discourses of Care

Barratt, S. (2009), ‘David Campbell obituary’, The Guardian, 5 October. Available online: https​://ww​w.the​guard​ian.c​om/sc​ience​/2009​/oct/​05/ps​ychol​ogy-m​ental​-heal​ th (accessed 25 February 2018). Barthes, R. (1985), The Responsibility of Forms: Critical Essays on Music, Art, and Representation, Berkeley; Los Angeles: University of California Press. Barthes, R. (2000), Camera Lucida: Reflections on Photography, London: Vintage Classics. Bataille, G. (2012), Eroticism, (n.p.): Penguin Books. Bell, S. E. (2002), ‘Photo images: Jo Spence’s narratives of living with illness’, Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 6 (1): 5–30. Berger, J. (1980), The Uses of Photography, New York: Pantheon Books. Campbell, B. (2009), ‘The dad project’. Available online: http:​//www​.brio​nycam​pbell​. com/​proje​cts/t​he-da​d-pro​ject/​. Campbell, B. (2014), ‘The dad project’, in M.-J. Blanco and R. Vidal (eds), The Power of Death: Contemporary Reflections on Death in Western Society, 237–54, New York; Oxford: Berghahn Books. Cartwright, L. (2014), ‘Visual science studies: Always already materialist’, in A. Carusi, A. S. Hoel, T. Webmoor and S. Woolgar (eds), Visualization in the Age of Computerization, 243–68, New York: Routledge. Caruth, C. (1996), Unclaimed Experience: Trauma, Narrative and History, Baltimore: Johns Hopkins University Press. Cipriano, G. (2008), ‘Where beauty softens your grief ’. Available online https​://ww​w.gia​ nnici​prian​o.com​/port​folio​/wher​e-bea​uty-s​often​s-you​r-gri​ef/ Ettinger, L. B. (1999), ‘Traumatic wit(h)ness-thing and matrixial co/in-habit(u)ating’, Parallax, 5 (1): 89–98. Flusser, V. (2014), Gestures, Minneapolis: University of Minnesota Press. Frank, A. W. (1997), The Wounded Storyteller: Body, Illness, and Ethics, Chicago: University of Chicago Press. Frank, A. W. (2008), ‘Caring for the dead: Broken narratives of internment’, in L.-C. Hydén and J. Brockmeier (eds), Health, Illness and Culture, 122–30, New York; London: Taylor & Francis. Frank, A. W. (2011), ‘The necessity and dangers of illness narratives, especially at the end of life’, Oxford Scholarship Online, DOI: http:​//dx.​doi.o​rg/10​.1093​/acpr​of:os​ o/978​01995​46695​.003.​0011. Gilman, S. L. (1988), Disease and Representation: Images of Illness from Madness to AIDS, Ithaca: Cornell University Press. Hamilton, P. and R. Hargreaves (2001), The Beautiful and the Damned: The Creation of Identity in Nineteenth Century Photography, Burlington, VT: Lund Humphries a part of Ashgate Publishing Company.

Gestures of Care in Briony Campbell’s The Dad Project

57

Held, V. (2006), The Ethics of Care: Personal, Political, and Global, Oxford: Oxford University Press. Hiroshima Mon Amour (1959), [Film] Dir. Alain Resnais, France, Japan: Pathé Films. Irigaray, L. (2007), Je, Tu, Nous, Abingdon; New York: Routledge Classics. Kleinman, A. (2015), ‘Care: In search of a health agenda’, Lancet, 386: 240–1. Kleinman, A. (2016), ‘Caring for memories’, Lancet, 387: 2596–7. Nancy, J. and V. Conley (1999), ‘On evidence: “Life and nothing more,” by Abbas Kiarostami’, Discourse, 21 (1): 77–88. Noddings, N. (2003), Caring: A Feminine Approach to Ethics and Moral Education, Berkeley: University of California Press. Pollock, G. (2010), ‘Aesthetic wit(h)nessing in the era of trauma’, Euramerica, 40 (4): 829–86. Ruddick, S. (1998), ‘Care as labor and relationship’, in J. C. Haber and M. S. Halfon (eds), Norms and Values: Essays on the Work of Virginia Held, 3–25, Lanham, MD: Rowman and Littlefield. Scott, J. (1991), ‘The evidence of experience’, Critical Inquiry, 17 (4): 773–97. Sevenhuijsen, S. (1998), Citizenship and the Ethics of Care: Feminist Considerations on Justice, Morality and Politics, London; New York: Routledge. Sile, A. (2018), ‘Echo and the failure of knowing in Judith Fox’s photographic project I still do: loving and living with Alzheimer’s’, Journal of Medical Humanities, 39: 361–75. Sontag, S. (1979), On Photography, Harmondsworth: Penguin. Spence, J. and R. Martin (1985), Phototherapy (my mother, Gladys Clode, ca. 1938). Available online: http:​//www​.josp​ence.​org/p​hotot​herap​y/pho​tothe​rapy_​4.htm​l. Stephenson, J. S. (1985), Death, Grief, and Mourning, New York: The Free Press. Tanner, L. E. (2006), Lost Bodies: Inhabiting the Borders of Life and Death, New York: Cornell University Press. Turner, V. W. (2011), The Ritual Process: Structure and Anti-Structure, New Brunswick: Aldine Transaction Publishers.

3

Care, illness and television spectatorship Paul Sutton

In this chapter I wish to reflect on the significance of televisual viewing as a form of care, as lived through by myself and my late wife, Antonella, after she became ill with a rare, highly aggressive and ultimately terminal form of endometrial cancer (papillary serous carcinoma). As such this chapter will be highly personal, but I hope that in exploring our joint experience of her illness there may be more general observations about the relationship between care and various forms of media that might prove valuable.1 This chapter seeks, then, to explore the relationship between care, illness and televisual spectatorship from a primarily autobiographical perspective, and it is with the autobiographical that I wish to begin, taking my cue from Amy Holdsworth’s Screen article ‘Televisual Memory’ (2010), which resonated, as I read it, with many aspects of my own work on Afterwardsness in film (see, for example, Sutton 2004), and which has proved instructive in my reflections on television viewing, memory, mourning but also, importantly, care. In her essay Holdsworth examines the relationship between stasis and televisual flow, setting up an encounter between the unremembered ‘flow’ of television versus its punctuated moments that provoke memory. Focusing initially on the ‘memorial’ episode or reflective montage as an exemplar of the relationship between television and memory, stasis and flow, Holdsworth extrapolates beyond these particular instances to argue more broadly for a productive relationship between television and memory. Holdsworth states that ‘we [may] think of the television viewing experience as one of accumulation, where viewing experiences and references are built up over time to form a kind of television autobiography’ (2010: 140). Referring to a ‘memory montage’ sequence from the long-running medical drama ER (NBC, 1994–2009), Holdsworth considers how the series attempts to ‘capture and reproduce […] those “afterimages” and “moments” built up over a life lived across television’

Care, Illness and Television Spectatorship

59

(ibid.). She goes on to reflect that ‘these associative possibilities seem particularly pertinent when considering serial drama, in which cumulative narratives demand and reward certain levels of audience investment in character and diegesis, often over hundreds of hours of programming’ (ibid., 141). Holdsworth’s article resonated with my own work on Afterwardsness in film and I want to explore briefly that connection, again in both autobiographical and theoretical terms. This work began in 1994 with my PhD which was entitled ‘Nachträglichkeit in Psychoanalysis and Film: A Paradigm for Spectatorship’. This project explored mourning and transience and I am struck, from my position as a bereaved widower, by how it now takes on a renewed and rather poignant significance, extending its reach beyond spectatorship and into lived experience. I argued in this work that cinematic spectatorship might be structured by the temporality of deferred action or Afterwardsness, as Jean Laplanche has usefully translated the Freudian term Nachträglichkeit. Motivated by moments of ‘trauma’, in the loosest sense of the word, what Laplanche calls ‘enigmatic signifiers’, I proposed that the spectator unconsciously de- and re-translates these signifiers both during and after their viewing. Memory, recollection, becomes a fundamental component of the spectatorial experience whether conscious or unconscious. Those moments that remain, often unbidden, after we have viewed a film, that return, sometimes for days, are the after-effects, the reworked signifiers, ‘traumatic’, arguably because they require attention. This is Barthes’s punctum, the element that stands out from the ground of the studium, that forces the attention of the spectator (1980). The autobiographical, then, is both televisual in the way that Holdsworth suggests but also personal in its access to both conscious and unconscious memories. As Lynne Segal describes in her book Radical Happiness, ‘loss, whenever it occurs, stirs up all previous losses, right back to infancy, easily evoking a sense of total abandonment’ (Segal, 2017: 131). The presence and absence that characterizes the spectatorial experience, and that of being in love, is subject to precisely this sense of transience, the awareness that the loved object’s presence, the film being viewed, will inevitably disappear, become absent. Karen Lury has written persuasively about this phenomenon in television, describing how the viewing of particular programmes can produce ‘the collision (or perhaps collusion) of feelings about the future and visions of the past, which allow the viewer to glimpse the future whilst simultaneously reflecting on the past’ (2007: 375). Holdsworth’s idea that viewers form personal televisual autobiographies constructed out of their individual televisual viewing histories, allied to their

60

Discourses of Care

broader lives, relates to Lury’s description above and is absolutely relevant to the experience that Antonella and I had watching Frasier (NBC, 1993–2004) at various points in our lives. I first began to watch the series when it was aired on Channel 4 in 1994, the year in which I moved from London to Bradford to undertake my PhD. Antonella also started to watch it at this point but as an existing viewer of Cheers (NBC, 1982–93), familiar with the character of Frasier Crane (Kelsey Grammer). My viewing was bound up with the regular and repeated pleasure of Antonella’s arrival in Bradford for the weekend from London, where she had remained working and living with her parents, but it was at the same time filled with a sense of loss too, the intense sense of loss that I would experience on her return to London on a Sunday evening. In a no doubt familiar sensation those weekends were often permeated by a feeling of future anticipated loss, an impression experienced in the present moment. Similarly, my viewing of Frasier with Antonella during her illness was inhabited by that same feeling of the transience of the experience and its pleasure, and the knowledge of her impending death that I had in effect already begun to mourn. When someone is terminally ill the mourning often begins while they are still alive, as one mourns a future that will no longer happen, as one prefigures the loss of that person. The importance of every moment becomes intense, freighted with the unacknowledged spectre of death. I became very conscious of the importance of holding onto moments in the present knowing that they would not last or exist in the future, moments that included televisual spectatorship more generally and Frasier in particular. As Antonella’s mobility was increasingly compromised as the cancer attacked her spine and eventually paralysed her, so her universe contracted and the ‘care’ offered by individual and shared televisual spectatorship became evermore valuable. Our spectatorship of the series was an accumulative experience of the kind described by Holdsworth, stretched over a lengthy period of time, in our shared past, that became part of both an individual and a conjoined televisual autobiography and which was then resurrected, so to speak, to function as a form of almost palliative care as we faced Antonella’s increasing immobility and the development of her illness. It is also the case, of course, that our re-viewing of Frasier together while Antonella was ill has become a further part of my personal televisual autobiography. For the first three years after Antonella died our Frasier box set sat on a shelf in our bedroom, with the last disc that we had viewed together still pulled to one side in its packaging as a reminder of where we had reached with our viewing. That visual marker functioned almost as a kind of memorial as it marks the period

Care, Illness and Television Spectatorship

61

of Antonella’s death: Frasier, Season 3, Disc 4. It is only as I began to write the conference paper on which this chapter is based that I was able (forced, in effect) to return to view the episodes that we had re-watched together, something that proved immensely difficult to contemplate but actually intensely pleasurable once I did begin to watch the series once more. While Antonella was ill we would generally watch Frasier sitting together in bed with Antonella propped up using a special backrest provided by occupational therapy. During her illness there had been a necessary transformation of the way space in our house was used. As Antonella became bed bound, paralysed – and before we had a hospital bed installed downstairs – she was forced to remain in our bedroom. This became her primary living space and the space in which we viewed all of our television, having previously not had one at all in the bedroom. Historically, Antonella would watch television downstairs and come up to bed at 2.00 or 3.00 in the morning because I found it a distraction and preferred to read before sleeping. Meals were now eaten in this space, which became in effect the main living space in the house with Antonella still at its centre, although her presence downstairs (and, as an excellent and passionate cook, in the kitchen specifically) was still felt as a loss, a decentring. One of the most important dimensions of this changed circumstance for our televisual viewing was the fact that we were sharing an intimate space together in which the pressures and realities of care could be put to one side for a brief period to be replaced by the television as a form of virtual care, but at the same time we could share physical contact, laugh together and talk. Mol, Moser and Pols have highlighted the non-verbal aspects of care: ‘It may involve putting a hand on an arm at the right moment, or jointly drinking hot chocolate while chatting about nothing in particular’ (2010: 10). Sitting together viewing in this way would also trigger memories – part of our shared biography – sometimes connected directly to, or prompted by, the viewing of Frasier but often entirely unrelated. But these memories become a little like the ‘hand on an arm’ (ibid.), they take on a significance because they function to reassure or to comfort and/or to bring pleasure. I remember at this time that Antonella developed a craving for caramelflavoured rice crackers and so I was always buying them whenever I saw them and our viewing was often punctuated by crunching as she ate them. After she died I was struck by how many packets of these crackers I had ended up storing (knowing that I would never eat them as I don’t like them) and which I kept until eventually they passed their sell-by date and I binned them. Holdsworth and Lury suggest ultimately that ‘television in certain instances [...] is a caring

62

Discourses of Care

technology’ (2016: 190) and borrowing the term ‘small pleasures’ from Feder Kittay they argue that it is the ‘routine qualities, repetitions and diversions [of texts] that reflect and articulate the important relations of care’ (2016: 190). There is also, arguably, an element of care for the future self through the making and retaining of resonant memories, so important in a situation such as that which Antonella and I faced. Perhaps the most important product of Antonella’s illness was the simple sharing of time; since the birth of our twins, Emily and Toby, in 2002 that was something we’d had less of for each other, but ironically Antonella’s illness afforded us this in unexpected ways. Waiting together to see her oncologist became an occasion to spend valuable time together, despite the frustrations of the frequent and lengthy delays to be seen; simply sitting or lying together in front of the television therefore became similarly significant. Faced with terminal illness there is an imperative to take the most from any given situation, to properly notice and engage fully with the small pleasures, to share time, laughter, pleasure and love. Antonella was someone who had always used television as a kind of care. She would always fall asleep to the television in the evenings and would use it as a means to relax and unwind. Arguably, it also reflected her Italian cultural heritage where television had a far more central place in the home than I was used to as a boy. My own experience privileged reading over television and while I was growing up television was a relatively rare ‘treat’ with viewing proscribed and organized. As a boarder at a public school I had limited access to television in any case, so my televisual autobiography or history was very different to that of many of my peers. This meant that my relationship to television was a relatively distant one, although those programmes that I was able to watch I bonded with in an especially intense way. My relationship with Antonella, whom I met when I was nineteen, just over a year after I had left school, engendered a shift in my approach to television and her influence softened my fairly rigid classbound viewing habits. Antonella’s illness and our collective viewing produced a significant further shift in my relationship with television and my viewing and appreciation of it. I have fond memories of Antonella watching series such as Hill Street Blues (NBC, 1981–7), Cagney and Lacey (CBS, 1981–8), The Equalizer (CBS, 1985–9) and Cheers when I first knew her; she introduced me to The Equalizer, for example, and to Cagney and Lacey, although I could never get excited by Cheers, despite its importance for Frasier. As I begin to work towards the closing section of this chapter, I would like to consider what it was about Frasier that made it so compelling. It is a sitcom

Care, Illness and Television Spectatorship

63

that received plaudits and awards for the quality of its writing and certainly that was a key element of the pleasure that Antonella and I took in viewing it but the characters themselves are so well crafted that they also become familiar and to some degree comfortably predictable in their traits. What Frasier also represents is a family, one in which care sits at its centre. Martin Crane (John Mahoney), a widower and an ex-policeman has been shot and injured as part of the series backstory. He is cared for by Daphne Moon (Jane Leeves), originally from Manchester and the person who regularly pricks the pretentiousness and the pomposity of Frasier (Kelsey Grammer) and his brother Niles Crane (David Hyde Pierce). Frasier himself is also involved in ‘care’, of course, as a radio psychiatrist, dispensing advice to the listeners who call into his show. In an early episode, ‘Death Becomes Him’ (Season 1, Disc 2), which was difficult for Antonella (and me to some extent) to view, Frasier comes face to face with his own mortality when a doctor that he has arranged for his father to see, dies suddenly. Angry at being kept waiting for the appointment Frasier becomes contrite when he discovers the reason for the doctor’s absence. Anxious that he too might die like this similarly aged doctor, Gary, Frasier resolves to try to find out what has caused the death in the hope that he might be able to differentiate this man from himself and therefore reassure himself that he is not in any imminent danger. In an effort to find out more about the doctor’s lifestyle to learn whether it might have been a factor in his early demise (he turns out to have been very fit and apparently healthy), Frasier visits the doctor’s funeral wake. In typical Frasier fashion, he blunders embarrassingly among the guests, asking awkward questions and making dreadfully inappropriate comments, before eventually meeting the doctor’s wife. She says to him: Dr Crane, I listen to you all the time, and maybe you can help me? What would you tell someone who called in the show and said they can’t get over why someone died? I keep running this over and over in my mind, and I just can’t understand how someone like Gary, who did everything right, can just die. I can’t make any sense of it.

Frasier replies: Mrs Newman, I know that you’d like me to come up with some grand answer to this whole thing, but I, I don’t have one. How someone who consumes nothing but cigarettes and cheeseburgers all his life can live to be eighty-three and that someone who takes care of himself can die at forty-one. It’s unfair, there’s no explanation for it, believe me, I’ve checked. [Laughter] I suppose the best we can

64

Discourses of Care do is, is live for the little joys and surprises that life affords us. You can’t spend your life being obsessed with death.

The scene portrays the earnest, pompous, self-obsessed Frasier; but we also see the wise, caring Frasier ‘from the radio’, dispensing advice and quiet, gentle comfort. His kindly advice echoes Feder Kittay’s ‘small pleasures’ (2002: 266) referred to earlier in relation to care, as he suggests to the bereaved widow that the best we can do is to ‘live for the little joys and surprises that life affords us’. The way that I watch television now has been hugely influenced and shaped by the viewing that I did with Antonella while she was ill, and in many ways I have been (and continue to be) ‘cared’ for by those programmes that I have watched and which have had an incredibly powerful effect on me. Perhaps the most important of these has been Battlestar Galactica (NBC, 2004–9), which is, of course, a series that is profoundly shot through with loss. The protagonists are searching for some kind of future that can move them beyond the loss of their home planet to a new world on which they can rebuild their lives. It is also a narrative that charts the demise of a key character, President Laura Roslin (Mary McDonnell), as she eventually succumbs to cancer in the very final episode. I discovered this series shortly after Antonella died in April 2013 and it sustained me during that summer. I would watch it every evening after my children had gone to bed, and I would escape entirely into its fictional universe, channelling my grief in and through each episode and the broader narrative arc of the series. I had never been so profoundly affected by a television programme in my life, and it is clear that my relationship with Battlestar Galactica was tied ineluctably to my grief. As I returned to work at the start of the new academic year I found that I had less time to view Battlestar and gradually the intensity began to wane; however, it continued to carry a significant affective charge and I became reluctant, almost frightened, to finish viewing the series. It was only in summer of 2016, three years on, that I viewed the final episodes, evidence undoubtedly of me wanting to hold onto Antonella – to not let go of the Antonella who still felt strangely close by immediately after her death – but also to hold onto the care that the series offered me, as well avoid experiencing the loss that its conclusion would cause me. The freighting of memory in relation to the viewing of Frasier by Antonella and I and my own memories in relation to her, as well as our experience of collective viewing and the moments – often extended – of television that I have

Care, Illness and Television Spectatorship

65

referred to in this chapter bear out Holdsworth’s thesis in relation to ‘televisual memory’, but the amplification of grief and mourning offers an intensification of it. This has been a challenging chapter to write. It has been difficult to balance the personal with the academic, and the return to viewing Frasier was not easy, although it has as I noted earlier been gratifyingly pleasurable. However, it has been therapeutic to think about and write about a period during Antonella’s life and my life, when, despite facing a terrifying and often painful future, we shared innumerable ‘small pleasures’, not least of which was the love that we had for each other.

Note 1 This chapter was originally delivered as a paper at the Discourses of Care conference at the University of Glasgow on 6 September 2016, the date of our nineteenth wedding anniversary. This date also marks the anniversary of the funeral of Diana, Princess of Wales, who had died on 30 August 1997, the week before we were married.

References Barthes, R. (1980), Camera Lucida, London: Penguin. Feder Kittay, E. (2002), ‘When caring is just and justice is caring’, in E. Feder Kittay (ed), The Subject of Care: Feminist Perspectives on Dependency, London: Rowman and Littlefield. Holdsworth, A. (2010), ‘Televisual memory’, Screen, 51 (2): 129–42. Holdsworth, A. and K. Lury (2016), ‘Growing up and growing old with television: Peripheral viewers and the centrality of care’, Screen, 57 (2): 184–96. Lury, K. (2007), ‘A response to John Corner’, Screen, 48 (3): 371–6. Mol, Annemarie, Ingunn Mooser and Jeannette Pols (eds) (2010), Care in Practice: On Tinkering in Clinics, Homes and Farms, Amsterdam: Transcript. Segal, L. (2017), Radical Happiness: Moments of Collective Joy, London: Verso. Sutton, P. (2001), ‘Nachträglichkeit in psychoanalysis and film: A paradigm for spectatorship’, unpublished PhD, University of Bradford. Sutton, P. (2004), ‘Afterwardsness in film’, Journal for Cultural Research, 3: 385–405.

66

Section Two

Technology, care and facilitation

68 

4

Are digital platforms and touchscreen devices effective caretakers? The touch-and-go of users with visual impairments Anna Piccoli

Within the field of media studies, extensive literature exists that investigates the influence of digital technologies on people’s lives and the interaction between human and non-human actors. New media and digital culture research tend to focus on the political and economic consequences of this interaction. In this chapter, I use a disability studies lens, and specifically the social model of disability, to suggest that digital devices and software that are not designed to be assistive technologies (e.g. smartphones, social networks, applications) can play a significant role in reducing functional impairment for people with low or no residual vision. I also argue that, despite their potential to reduce impairment for visually impaired people, everyday digital devices do not fit in the definitions of caregiver or caretaker that currently exist in the literature. Rather, they act as ‘relievers’. Thus, they complicate the concept of ‘care’ for disabled people in the twenty-first century. Generally, assistive technologies are designed to address the specific needs of a given category of people with a specific impairment. In this sense, they differ from the digital devices and software I refer to throughout this chapter, which are created for a larger market and do not aim to eliminate or reduce environmental barriers for disabled people. However, when digital devices can, in part, provide effective assistance for people with – for example – visual impairments, should these ‘everyday’ devices be regarded as a mode of care? In light of the experiences of eighteen interviewees who self-describe themselves as blind or visually impaired, I reflect on the notions of caregiving/caretaking, look at how digital devices affect visual impairment, and subsequently challenge

70

Discourses of Care

the definition of the ‘carer’, introducing instead the notion of the ‘reliever’. In doing so, I draw upon Amelia DeFalco’s differentiation between ‘caregiving’ and ‘caretaking’ (2012: 382). In DeFalco’s presentation of caretaking, ‘[t]he power implications are clear: to “take” care is to take “charge”, to adopt a position of power over the person or object cared for’ (2012: 382). Instead, she proposes, The power implications of ‘caregiver’ are dispersed and subtle, not clearly hierarchical as in caretaking, which involves one person put into a position of maintenance and responsibility. Caregiving does not, by definition, necessitate payment, training, assignment, or supervision. Its lexical development suggests the need for terminology denoting care work and connoting ethical commitment, since the caregiver responds to another’s needs rather than merely assuming responsibility for upkeep and oversight, and offers attention and concern, implying human decency, selflessness, responsibility, even affection. (2012: 383)

Within this context of caregiving, the interplay between digital devices and impairment is increasingly important. According to digital studies scholar D. Berry, [W]ithin the realm of digital computational devices we increasingly find symbolically sophisticated actors that are non-human. These devices are delegated particular behaviors and capabilities and become self-actualizing in the sense of realizing their potential by performing or prescribing complex algorithm-based action onto the world and onto us by acting to intervene in our everyday lives. (2011: 125)

Several scholars, especially from new media studies, have engaged with this topic, showing the powerful impact that digital technologies – even invisible ones – have on the actions and choices of people in areas of the world where such devices are commonly used (see Beer 2009; Pariser 2011; Berry 2011; Langlois 2013). These studies are extremely relevant for those who would like to better understand digitized societies. However, while they offer a general overview regarding the ‘ordinary’ user, they do not necessarily investigate what happens in specific fields, such as care. Yet, the more widespread non-human actors become, the more urgent it is to interrogate their effects within a multiplicity of sectors, with diverse users.1 This chapter is based on data collected through a series of eighteen semistructured interviews with Italian and Dutch users of digital devices who have low or no residual vision. Drawing from their experiences, I propose that

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

71

contemporary disability studies and new media and digital culture studies need to consider how digital devices and software provide care by relieving functional impairment. Discussing early smartphones, McGookin et al. (2008) argue that touchscreen devices are largely inaccessible to blind people – a position which has seldom been challenged, despite technological advances. In 2019, smartphones and other digital devices are widely used by people with visual impairments, with the development of screen-reading software such as JAWS (Job Access With Speech), NVDA (NonVisual Desktop Access) or VoiceOver. The combination of audio inputs via screen reading and continual practice on a spatially limited surface enables many people with visual impairments to integrate touchscreen devices and other, mainly visual, platforms, applications and software in their daily life. Besides acknowledging the use of digital devices by and for people with visual impairments, I also consider the consequences thereof. New media technology, phone applications and digital platforms are increasingly allowing users with visual impairments to access real-time information about their surroundings, friends, events and objects. The immediacy of information and contact is crucial in reducing mobility problems. More importantly, when help is needed, one can ask and receive immediate feedback from a digital device. The interviewees who took part in this study tended to perceive ‘everyday’ digital devices, platforms and software as offering greater independence from external caretakers. At the same time, though, there is a potential risk of creating technological dependence; however, I follow Berry in considering it more productive to focus on the way technology transforms our lived experience. In the last part of this chapter, I take into account the transformations that digital devices bring into the being-in-the-world of visually impaired users and address a central question: Can digital devices be considered a mode of care? To answer, I go back to my initial considerations on the notion of care and analyse how these play out against the backdrop of the growing importance of nonhuman agents.

Care: Instrumental and affective support towards independence Under DeFalco’s use of the term, being aware of the purpose of caregiving/ caretaking and the forms its actualization can take is the first step to

72

Discourses of Care

understanding whether someone – or something – acts as a caregiver. As some of the theories of care covered in this collection indicate, care is provided to increase the quality of life of people with physical or psychological impairments, either out of empathy or out of moral effort (Noddings 2010). Even in its most basic definition, care encompasses two main areas: medical assistance and relational bonds. Under this understanding, care is ‘the provision of what is necessary for the health, welfare, maintenance and protection of someone or something’ (Oxford Dictionaries, n.d.). As a verb, it equals to ‘feel concern or interest […] affection or liking’ (Oxford Dictionaries, n.d.). In this chapter, I refer to Reinhardt’s theorization of care as both ‘instrumental support’ and ‘affective support’ (2001: 78–9). Instrumental support includes providing material aid and physical assistance. Affective support includes intimate interaction, advice and positive feedback. Clearly, instrumental support is essential to people’s health and well-being, but it has been demonstrated that the absence or presence of affective support largely influences the actual effects of received care. As one of the participants in Nyman, Innes and Heward’s study explained, ‘To me care is, is continuous. It isn’t [...] one person looking in and saying are you alright and ticking a box’ (2016: 5). Regarding visual impairment, Reinhardt (2001) proved that visually impaired older people benefitted from affective support from friends and family members and showed greater life satisfaction than those who did not have affective support systems. The former group had fewer depressive symptoms and greater life satisfaction, and adapted better to vision loss than those who did not receive affective support from friends and family. Similarly, Ramani, Police and Jacob point out that in the case of children with visual impairments, ‘the use of low vision devices can increase the reading speed, and improve reading accuracy and fluency’ (2014: 113). However, Ramani et al. also found that ‘the role of special educational approach, the motivation of the parents, teachers and the children involved, study environment and the focused care of the special educators and the parents cannot be underestimated’ (2014: 113). The importance of affective support is one of the driving factors in the development of patient-centred care (Epstein and Street 2011). In Stewart’s words, Patients want patient-centred care which (a) explores the patients’ main reason for the visit, concerns and need for information; (b) seeks an integrated understanding of the patients’ world – that is, their whole person, emotional needs and life issues; (c) finds common ground on what the problem is and mutually agrees on management; (d) enhances prevention and health

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

73

promotion; and (e) enhances the continuing relationship between the patient and the doctor. (2001: 445)

As these quotes suggest, understanding the difference between instrumental and affective support is more than a theoretical exercise – it is of tangible importance to people who receive and give care. On a theoretical level, it resonates with the distinction between a caretaker – mainly in charge of instrumental support – and a caregiver – someone who tends to be also affectively involved. What is the purpose of providing care? In a society that ‘mythologizes concepts such as “independence” and “autonomy”’ (Fineman 2002: 215), care is seen as paramount to providing greater independence and decision-making capacity to disabled people (cf. Feder Kittay 2011). Enabling more independence is regarded as ‘conducive to promoting confidence and maintaining self-esteem’ (Watkinson and Scott 2004: 40). While dependence often carries a negative connotation, and is regarded as inversely proportional to capacity, independence is equated with dignity. This is a dangerous paradigm, which should be replaced by ideas of interdependence. Our dignity should not be associated with independent capacity but rather considered relational: our existence is inherently interdependent because our moral personhood is ‘inextricably linked with other persons who care for us and for who we care’ (Purcell 2013: 54). As Feder Kittay argues, Acknowledging the inevitable dependency of certain forms of disability, setting them in the context of inevitable dependencies of all sorts, is another way to reintegrate disability into the species norm. … When we acknowledge how dependence on another saves us from isolation and provides the connections to another that makes life worthwhile, we can start the process of embracing needed dependencies. (2011: 56–7)

Using the social model of disability, one could say that care should reduce or eliminate environmental and societal impairments for people who receive care. People who have an impairment can depend on the help of others – both for physical assistance and in terms of supported decision-making. Depending on the type of impairment, they may not be able to perform certain actions themselves, unless specific changes are made to the infrastructure. A carer’s intervention can serve to eliminate or reduce – even only circumstantially – the systemic barriers that produce disability. Paradoxically, though, this creates a situation (real or perceived) of dependence on others, which might be felt as a burden for the carer or as a

74

Discourses of Care

limitation on the free will of the person receiving care. People with impairments often rely on carers (a family member or a paid assistant) who regularly look after them and who are supposed to provide them with greater independence. According to Feder Kittay, ‘The “middlemen” in the provision of care are the arbiters of whether and what kind of care is provided. The person in need of care is in their power with respect to intimate details of life. […] This is an imposition and intrusion which can be oppressive’ (2011: 50). Equally, ‘giving care involves the absorption of another’s pain with definite risks to the caregiver’ (DeFalco 2011: 244). The theoretical construct of ‘caregiver burden’ has been widely used to refer to the adverse effects that a caregiving role may entail for those who take it on. Although the concept lacks uniformity in the definition and, consequently, in the ways it can be measured (Bastawrous 2013), and despite its highly problematic rhetorical implications, it is employed to account for specific aspects that may characterize carers’ experiences. The term incorporates a variety of stresses caregivers may face, including psychological and emotional strain (e.g. depression), social restriction (e.g. isolation), physical consequences or financial difficulties (Bastawrous 2013; Adelman et al. 2014). As DeFalco puts it, ‘To participate in the ethics of care […] is both necessary and dangerous’ (2011: 242). As I argue in the following sections, digital devices can sometimes represent a solution to the paradox of being (or feeling) dependent on those who are supposed to enhance our independence through instrumental or affective care. They constitute tools that allow the user to lower environmental or social barriers independently of caretakers, although they offer only limited affective support. This resonates with the capability approach put forward by Sen and further developed by Nussbaum. As effectively summarized by Robeyn, ‘the ends of well-being, justice and development should be conceptualized in terms of people’s capabilities to function; that is, their effective opportunities to undertake the actions and activities that they want to engage in, and be whom they want to be’ (2005: 95). It is possible to claim that ensuring equal opportunities makes sense only if one can take them up and often people with impairment are not in this position because they need appropriate accommodations and equipment (Feder Kittay 2011: 56). As also described by Castle within this anthology with regard to audio description, there are cases in which digital devices (combined with assistive technologies) can enable users with impairments to make the most of available opportunities. To stick to the capability approach, digital devices may offer a wider array of ‘capabilities’ –

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

75

real freedoms or valuable opportunities to do what one wants to do or achieve a different status (Robeyn 2005). It is important to stress that I am far from considering this scenario a disability utopia. Digital devices, platforms and software can also be inaccessible or unusable by people with impairments and it is crucial not to underestimate the problem of (self-)exclusion that derives from inaccessibility and poor usability. Moreover, despite the apparent intuitive use of digital devices, certain people may have difficulties in learning how to use new appliances, and friends and family members may not be able to explain how to make the most of them (e.g. friends and family may have low levels of digital literacy; sighted people may not be skilled enough to use VoiceOver in the same way visually impaired people can do through repeated use and habit).2 Additionally, financial limitations may also be significant, as digital devices can be expensive. This is especially relevant if combined with planned obsolescence, given the percentages of people with impairments who are unemployed. According to the results of the quarterly European Union Labour force survey (EU-LFS) carried out in 2011, less than 50 per cent of people with impairments were employed, with a gap of 30 to 40 percentage points in comparison with people without any impairment (Eurostat 2018).3 Notwithstanding these concerns, it is important to account for those cases where technology can provide a solution or an improvement in respect to one’s quality of life and regard them as case studies and best practices to build on. I suggest that (part of) care in the twenty-first century is transferred to digital devices which were not designed to be assistive technologies, yet still facilitate participation and self-sufficiency. Accordingly, it is time to revise current definitions of care and caregiver in order to include non-human agents as well. In considering this proposition, I concentrate on people with visual impairments. People with low or no residual vision are more likely to require assistance with functional tasks, which makes them dependent on friends, family members or external caretakers, including animal caregivers (e.g. guide dogs). Nyman et al. conclude that ‘people with visual impairment often have greater dependence on others due to difficulties with mobility and activities of daily living’ (Nyman, Innes and Heward 2016: 1). Such everyday tasks include identifying garments, counting money, recognizing food, reading labels, applying make-up, travelling to and moving around in unfamiliar places, and many more (see Reinhardt 2001, 78). Using digital devices and interacting with widely used online platforms can be added to the list, representing yet another

76

Discourses of Care

dimension of dependence on external help. Digital dependence, however, does not specifically distinguish visually impaired people. Rather, it applies to users of digital devices (in particular, smartphones) more generally (see, Haug et al. 2015; Wang, Xiang and Fesemmaier 2016; Lin and Chiang 2017). Besides, and perhaps contrary to the expectations, in some cases digital devices can guarantee a certain degree of autonomy in carrying out daily tasks and reduce the need for a caregiver. To illustrate my point, in this chapter I refer to concrete examples from the experience of visually impaired users from Italy and the Netherlands.

Methodological considerations: Contingency proves fruitful The observations that follow have emerged from the analysis of eighteen semistructured interviews with Italian and Dutch people with visual impairments. The interviews were conducted as part of a phenomenological inquiry about the materiality of software from the perspective of users with low or no residual vision (Piccoli 2016). Although the questions did not investigate the role of digital devices in relation to caregiving, the answers of several respondents elicited considerations regarding the impact of such devices on care. In the original study convenience sampling was adopted as a strategy to find participants. Two organizations for blind people and one university body acted as the main vehicles to recruit interviewees. In particular, Irene Matassoni from Irifor Trento was the primary reference point in Italy, along with the personnel of the Disability Office of the University of Trento, while Paul de Nooij from Bartiméus helped to recruit contacts in the Netherlands. Additionally, snowball sampling was carried out for the purpose of reaching the desired sample size. The interviews were conducted between March and June 2016 and lasted between thirty minutes and one hour. They were recorded and transcribed using some of the symbols listed by Palermo (2009), following SAMPA conventions (Speech Assessment Methods Phonetic Alphabet).4 All excerpts are presented in English with the original quote in the footnote if in a different language (Dutch or Italian). Before starting the recording, all participants were informed about the goal of the study, its duration and the background of the researcher, and were asked permission for recording. All interviewees consented. They were informed that their data would be anonymized and that they could end their participation at any time.

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

77

Accordingly, throughout this text fictitious names are used to quote and refer to the participants. The final, non-hypothetical corpus consisted of nine men and nine women of various ages, for a total of eighteen people (see Table 4.1). Within my sample, four persons (males) have been legally blind since birth or a very young age; five people (three males, two females) became blind due to degenerative illnesses; one person (female) became blind because of accident-induced brain damage; finally, eight people (six females, two males) have very low vision. Six persons were between nineteen and thirty years old, one person was between thirty-one and forty, five persons were between forty-one and fifty, one between fifty-one and sixty and five between sixty-one and seventy.5 Although the population sector most likely to use highly visual online platforms comprises those aged between eighteen and fifty years (cf. Duggan and Brenner 2013; see also statistics by Statista 2014 and Hutchinson 2017), older interviewees turned out to be quite active in terms of platforms they were registered to and applications they had downloaded. Therefore, their contributions were considered relevant to the research. In general, participants showed a high degree of digital literacy. Either they learnt to use a computer at a young age or have had years of experience using it first at work and then at home.6 Strikingly, with one single exception, they all have a touchscreen device.7 Sixteen participants currently use a smartphone, specifically an Apple iPhone, and carry out most digital activities with it. All interviewees expressed their satisfaction with the technology and only one of them raised questions regarding the monopoly Apple has managed to create by being more attentive to accessibility issues than other companies.8 All respondents mentioned that Apple has developed particularly accessible systems and applications, which makes the iPhone more suitable for ‘blind’ use than other smartphones. This might sound counterintuitive, given that touchscreens have often been considered inaccessible to blind people (see McGookin et al. 2008). However, thanks to software development and the introduction of screen-reading programs, the combination of audio inputs with continual practice on a spatially limited surface enables partially sighted or blind men and women to integrate touchscreen devices in their daily life. More importantly, while ad hoc assistive technologies might be avoided because they signal deviancy from the ‘norm’ (see Söderström and Ytterhus 2010),9 digital devices can enhance independence and reduce the differences between users.

Table 4.1  Study Participants’ Main Demographics Gender Nationality Name  Ilaria Diego Fabrizio Lorenza Giovanni Francesca Emilio Kathy Giacomo Arianna Remco Maarten Lisanne Jan Peter op ’t Hof Julia Janneke Stephanie Total

IT

Age

M

F

  M M   M   M   M   M M   M M

F IT     IT     IT   F IT     IT   F IT     IT   F IT/AM     IT   F IT/AL       NL     NL F   NL     NL     NL

          21 27 19   25       27  

      9

F F F 9

  24   6

      10

Status Blind since birth

Blind (degeneration / accident)

Very low vision / partial blindness

65 68 69           61   62        

            x   x         x x

x x x

      x x x   x     x        

      5

      4

NL 19–30 31–40 41–50 51–60 61–70

NL NL NL 8

48

40

54

46 49 46

  1

49 5

  1

x x x

  6

x x x 8

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

79

Digital devices: Gaining independence in daily life During the conversations, several participants referred to the substantial independence they achieved thanks to digital platforms and mobile touchscreen devices. While before the release of built-in screen readers it was claimed that ‘there are obvious implications for those with vision impairments when there are no physical markers to point towards the phone’s functions’ (Ellis and Kent 2008: n.p.; cf. McGookin et al. 2008), thanks to the addition of speech software or braille extensions visually impaired users can take advantage of touchsensitive flat screens. Not only can they use them, but they can also benefit from this kind of technology. Ilaria (sixty-five, blind), for instance, said that ‘[iPhones] led us to be autonomous, very very much’.10 Giovanni (fifty-four, low vision) commented, [I]n comparison with the past when we could not do anything, today [technology] helps us very much. […] Just to say a trifle, I like to do karaoke. How could I have done karaoke in the past? […] but now, with these systems that allow us to carry a very small computer with us or even the iPhone, [I can] scan the text with the finger and, while I scan, sing.11

Lisanne (forty), who had brain damage and became blind at the age of thirty-five as a consequence of an accident, mentioned the fact that touchscreen devices gave her the possibility to perform actions again that she could not do after losing her sight. A very basic example is jotting down a list for grocery shopping – she can now dictate the list to her smartphone and have the phone read it out for her when needed. Lisanne also recalled thus: When I got my brain damage I was sitting almost like Stephen Hawking and the only thing I could do was think[ing] and my motivation to tap into this was first when I started to google again and the second one was ‘I have to communicate with someone’ […] you can’t say anything in sentences, so what I did was write it down in the notebook and let the VoiceOver [the screen reader device embedded in all Apple products] speak and that’s how I got in touch with sounds again.

Moreover, digital devices and platforms can offer an immediacy of information and contact which can be helpful in reducing mobility problems: ‘With internet you can say “Hi!” and you don’t have to go somewhere’ (Lisanne, forty, blind). Digitally, one can still cultivate friendships and social contacts, at least

80

Discourses of Care

to a certain extent, when physical assistance is not available and face-to-face meetings are more complex. Additionally, digital platforms and apps can enable the construction of global networks and facilitate spreading relevant information through interest groups. According to Hodge and Thetford (2015), information about aiding technologies or available services and activities can be crucial for visually impaired people who want to remain active or keep vision loss under control as much as possible. At the same time, users who wish to talk about their impairment can potentially reach a wider public and receive feedback. This might be an additional source of affective support. More importantly, when help is needed, one can ask and potentially receive immediate feedback, not only by calling a carer but also by turning to external carers (as in the case of Be My Eyes) or automatized image recognition apps (e.g. TapTapSee). Be My Eyes is a free app that connects people with low or no vision with sighted volunteers: if no trusted carer is directly available to help, the person with visual impairment can launch a call which is re-directed to the first available volunteer. Through live video volunteers can assist the person calling in, for instance by reading out the street names and providing orientation or by identifying the expiry date of a medicine. TapTapSee functions relying on the camera and VoiceOver embedded in the smartphone: the person in need can tap twice on the screen to photograph any object; this is automatically analysed, recognized and finally identified out loud by the app for the user. Besides having the chance to chat, share and comment on digital platforms, and get assistance, visually impaired users can also take advantage of access to real-time information about their location and surroundings. Lisanne stated, ‘With Siri when I ask her […] “Where am I?” I get one [GPS] at 1-metre, so I don’t walk on the highway, I walk […] on the sidewalk. […] She can guide you within a meter.’ Peter, forty-nine, blind, receives information on nearby friends and acquaintances: ‘I use Foursquare and Swarm for using my social media to get information of my immediate surroundings and then I discover if there are friends around.’ Users can search for information on happenings and events: Lorenza, forty-eight, low vision, mentioned that she uses digital platforms as a counter to ‘the discourse of isolation, also being able to know what is of our interest in real time’.12 Finally, TapTapSee can tell Jan, twentyseven, blind, the colour of his socks or the content of a food can, although he argued that ‘TapTapSee is an interesting concept, but it should be a lot quicker and also the problem really is that with this kind of descriptions … it’s too much information’.

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

81

A step forward: Melting into the crowd thanks to digital devices In previous sections I argued that independence referred to self-sufficiency in tasks of daily living. Interview respondents acknowledged the greater degree of independence (or, in other words, lower barriers and greater capabilities) that they had acquired through digital devices and online platforms in day-to-day activities. Yet, for some respondents independence went beyond doing and also implied the possibility of being camouflaged among sighted people. There is a fine line between appreciating the possibility of not sticking out in a crowd and passing. Passing involves an attempt to conceal an identity that is perceived as faulty (incomplete, blemished) and act according to a different identity (Rueda and Mehan 1986).13 Passing practices are controversial because they ‘are usually read as either the coerced performance of assimilation or the canny management of identity’ (Carmody 2015: 132). Therefore, passing is regarded as highly problematic by scholars who advocate for a social justice movement that does not produce stigmatized identities (Brune and Wilson 2013; Selznick 2014). Rather than framing the use of digital devices as a passing strategy, interview respondents acknowledged the fact that the use of digital devices handily replaced the usage of apparent assistive technologies. Due to their size or the noise they produce, the latter tend to draw others’ attention to people’s impairments, thus enhancing the risk of being stigmatized. Everyday digital devices, instead, allow them to mingle without being particularly noticeable. The possibility to blend in, not to be singled out due to behaviours and objects that are out of the norm, emerged as an important aspect for interviewees. Discussing caring practices, Moore and Miller (2003) noted that individualizing the individual’s care is necessary but not enough: normalization also plays a very relevant role. Treating individuals with visual impairments as people with feelings and needs comparable to those of sighted people is extremely important. Since a large portion of sighted people in technologically advanced countries use touchscreens very frequently and even use voice messages both in private and in public, a visually impaired person using headphones to listen to the screen reader or talking to Siri would not stand out in the crowd. Referring to her phone’s screen reader, Ilaria (sixty-five, blind) said, ‘Well, if before we had the fear of the vocal. [...] Now others use it too. Well, this is another step of technology, that it is used by everyone […] we are not so looked at

82

Discourses of Care

and this is another way of living, otherwise everything is hidden.’14 Therefore, digital platforms, together with advanced (mobile) technology, are perceived as treasurable spaces that lower environmental and social barriers, and offer opportunities for greater autonomy from external caretakers (be they human or animal) and for social integration, with potentially interesting ethical and political implications as well as consequences on the gendered dimension of care. At the same time, though, platforms and apps themselves become agents upon which users are dependent. Referring to the combination of screen reader (i.e. VoiceOver) and new media, Ilaria stated that ‘they give me a boost. They give many opportunities that would be unthinkable before […] but once it’s there you can’t do without.’15 Nonetheless, even the dependence on digital devices is somewhat normalized. Much of the recent literature in media studies suggests that the dependence on apps, platforms and digital devices at large is not limited to (visually) impaired users but rather concerns the majority of users with or without impairments. Digital devices are constructed to hook the user through a seamless flow of information (Uricchio 2004; Berry 2011; Chamberlain 2011).16 The needs or circumstances that bring about dependence may differ from user to user, yet digital devices exercise their agency on everyday actions for a large variety of users: socializing, travelling, gathering information about the world, exploring new places, identifying shops and restaurants and tracking one’s physical activity and health status (see Meikle and Young 2012; Wang, Xiang and Fesenmaier 2016; Seifert et al. 2017). If the user exerts control over the device, though, interviewees presented this technological dependence/reliance as a good compromise, and privileged the use of digital devices over feeling dependent on human carers.

Non-human actors: Redefining care? Studies about care tend to focus on the support provided either through medical and technical equipment or by human beings (friends, family members, social services, paid carers). The two are often interrelated, since instrumental support often requires the intervention of external carers to implement it. In the literature, though, there is a lack of sources on the influence of everyday digital devices on care.17 Such devices are generally intuitive in use and more easily accessible than sophisticated technologies and low vision aids. They can

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

83

provide some help with practical tasks (reminders, alarms, grocery shopping, reading labels, dressing up, navigating an area) and offer possible solutions to keep individuals stimulated (read-aloud books, audio descriptions for television and films, games, social contacts). In this sense, they counteract problems that recur for people with visual impairments and that are not easily tackled through traditional care and medical services (cf. Nyman, Innes and Heward 2016: 4), such as isolation, loneliness, limited mobility, complexity of daily tasks execution or restricted access to leisure activities. Thus, they have the potential to reduce functional impairment and the need for instrumental assistance, while enhancing individual capabilities. Furthermore, these devices can increase self-awareness and self-esteem. They may also provide some form of affective support (e.g. via social networks and communication platforms such as WhatsApp, FaceTime and Skype). Moreover, in contrast to existing assistive technologies, these tools do not mark the difference between sighted and visually impaired people. Rather, they are perceived to be in line with the norm: they are instruments that everyone uses and that people with low or no residual vision can productively use too. Digital devices and digital platforms appear to positively impact on the adjustment to losses in basic skills and material and psychological security that often result from the advent of blindness or low vision, such as the loss of confidence and independence, loss of the feeling of personal worth, loss of privacy, loss of identity and self-esteem, or loss of financial security (Negrin 1983: 58, referring to Carroll 1961). However, I would hesitate in fully equating digital devices, platforms and apps to caregivers. If we look back at Reinhardt’s (2001) definition of care, we could notice that it suggests that care(giving) implies the capacity to feel.18 As a verb, ‘care’ hints at feelings of concern or interest, affection, attachment or liking and requires an attitude of watchfulness and attention. Its etymological root in Old High German (chara) also refers to feelings of grief and concern (Oxford Dictionaries n.d.: n.p.). In this context, Feder Kittay’s (2011) distinction between care as ‘labor’, ‘attitude’ and ‘virtue’ seems particularly fitting to add a finer shade to the difference between instrumental and affective support: As labor, it [care] is the work of maintaining others and ourselves when we are in a condition of need. It requires skills on the part of the carer and uptake on the part of the cared for. […] As an attitude, caring denotes a positive, affective bond and investment in another’s well-being. […] Care, as a virtue, is a disposition manifested in caring behavior (the labor and attitude) in which ‘a shift takes

84

Discourses of Care place from the interest in our life situation to the situation of the other, the one in need of care’ (Gastmans, Dierckx de Casterle and Schotsmans 1998: 53). (Feder Kittay 2011: 52–3)

Despite futuristic scenarios of empathic technologies, like the intelligent operating system starred in Her (directed by Spike Jonze in 2013), and technological advancements (e.g. artificial intelligence), current digital devices are not able to feel interest or concern; they do not care about their owners. Therefore, I suggest that we cannot consider them as carers in the emotive sense: they do not have a caring attitude; nor do they provide care as a virtue. We are left with ‘labour’ only. Are they at least caring in this form? In a sense, digital devices are caring. They contribute to ‘maintaining others and ourselves when we are in a condition of need’ (Feder Kittay 2011: 52); they have ‘skills’ and they require ‘uptake on the part of the cared for’ (Feder Kittay 2011: 52). However, I suggest that care, in addition to the capacity to feel, also requires intentionality. Taking care of someone or something means acknowledging (perhaps incorrectly) a certain need and trying to address it.19 Digital devices cannot do this: they might obviate the need, they may create new capabilities by reducing environmental barriers, but they do that coincidentally rather than intentionally. They also do not fit in DeFalco’s (2012) differentiation between ‘caregiving’ and ‘caretaking’: they are not caretakers since they cannot actively take a power position over the user; nor are they caregivers because they do not have an ethical commitment towards the user. One could say that they are in a grey zone between care as labour, assistive technologies, functional media and mere products of consumerism – which they also are. They are not caregivers in a traditional sense because they cannot take care of someone/something, but they can provide some form of care or mitigate the need for it (they can offer a wider array of ‘capabilities’), while also functioning as common media that have no relation with impairment. Although in the context of care digital devices could be considered as a form of self-care by the users, I propose to regard them as relievers. They are relievers in two ways: they can relieve recipients of care by reducing their need for care and creating capabilities, and they can relieve the carers by taking over tasks that they previously carried out. Introducing such a distinction is important not for mere terminological clarity. In fact, identifying the peculiar, double role of digital devices within the field of care is a starting point for further, more detailed and much needed research on the subject.

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

85

Conclusion Other cases of technologies with an (unplanned) effect on care beyond visual impairment exist. Siri, for instance, gained even more popularity when it proved helpful for autistic persons and their carers (see Newman 2014; see also Murray 2008, 2017). Nonetheless, scholars have largely failed to address the topic so far. This chapter lays the foundation for new studies aimed at understanding the scope and significance of non-assistive technologies for caring behaviours. Through the specific case of visually impaired users, I have shown that digital devices, platforms and apps have the potential to eliminate the need for care in some circumstances and to foster independent living, at least to a certain extent.20 They can enable actions that would have been unthinkable before without the help of an external caregiver and/or technical equipment. The exact function of digital devices within care, though, is disputable. As explained in the previous section, they do not provide care in the emotional sense: they are not empathetic or emotionally connected to the recipient of care; even if they do somehow constitute care in the sense of labour, they are not caregivers. I propose to consider them as unintentional but welcomed relievers. Through this preliminary distinction between carers and relievers I invite other scholars and practitioners to explore both the limits and the empowering potential of ‘relievers’ for different impairments and build on that for more effective care.

Notes 1 Throughout the chapter I use the word ‘users’ to indicate people who regularly use digital platforms, software and digital devices other than assistive technologies (although the former may integrate the latter, such as in the case of embedded screen readers). 2 Consider also the case of people with dementia and concurrent visual impairment described by Nyman et al. (2016). 3 Although the electronic version of the article (available here: https​://ec​.euro​pa.eu​ /euro​stat/​stati​stics​-expl​ained​/inde​x.php​?titl​e=Arc​hive:​Disab​ility​_stat​istic​s_-_l​ abour​_mark​et_ac​cess&​direc​tion=​next&​oldid​=4111​16) was latest updated on 3 April 2019, it still refers to data from July 2014. Currently, no new data seems to be available about the access to the labour market for people with impairments.

86

Discourses of Care

4 For more information see www.phon.ucl.ac.uk/home/sampa [accessed 20 July 2019]. 5 N.B. Some participants have their birthdays later in the year, which means that statistically they would be one year older. However, my report takes into account the age at the moment of the interview. 6 This second point refers to older participants who had the chance of testing the first computers in the nineties, mostly in the workplace, but did not grow up with digital technologies, as it may be the case for younger interviewees. 7 Giacomo (sixty-one, blind) refuses to adopt a smartphone because he considers it useless to invest time and effort to learn to use a touchscreen device when he can do everything through his old mobile phone and his computer deploying a normal keypad and keyboard plus braille assistive technologies. 8 It should be pointed out that this person specializes in telecommunication engineering, which makes him aware of risks and possibilities involved in the use of different kinds of technologies. He is also one of the few participants using Linux and the most opinionated about open access and the importance of offering full usability to all people. 9 Assistive devices may draw attention to ‘restriction, difference and dependency, characteristics that were associated with a medical understanding of disability and with an identity as deviant’ (Söderström and Ytterhus 2010: 308). For instance, Söderström and Ytterhus (2010) found that ‘when young people perceived a certain technology as outside the range of the normal, or if the technology overtly spoke of impairment, using this technology had to be either disguised or negated’ (307). 10 Translation from the Italian (trans. Piccoli): ‘[Gli iPhone] ci hanno portato a essere autonomi, tanto tanto’. 11 Translation from the Italian (trans. Piccoli): ‘[R]ispetto a una volta dove non riuscivamo a farci niente, oggi ci aiuta veramente tanto insomma […] Tanto per dire ‘na stupidaggine, io amo fare il karaoke, no? Come avrei fatto a fare karaoke una volta? […] Ma adesso, con questi sistemi che ci permettono di portarci dietro un computerino piccolino oppure addirittura l’iPhone, [posso] scorrere il testo con il dito e intanto che scorro cantare.’ 12 Translation from the Italian (trans. Piccoli): ‘il discorso dell’isolamento, anche del riuscire a conoscere ciò che è di nostro interesse in tempo reale.’ 13 Passing as opposed to coming out is also one of the points Sherry (2004) highlights as commonality between Queer Studies and Disability Studies. 14 Translation from the Italian (trans. Piccoli): ‘Che se prima avevamo questo timore della vocale ... Adesso invece lo utilizzano anche gli altri. Ecco, questo è un altro passo della tecnologia, che viene usato da tutti … non siamo così osservati e questo è un altro modo di vivere, altrimenti è tutto nascosto.’

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

87

15 Translation from the Italian (trans. Piccoli): ‘mi danno una bella botta di vita. Eh, danno tante possibilità che sarebbero impensabili prima … però una volta che c’è non se ne può fare a meno.’ 16 It should not be forgotten that digital devices are usually constructed with the sighted user in mind (cf. White, Fitzpatrick and McAllister 2008; Wu and Adamic 2014) and are analysed with the sighted user in mind. Pogliano’s (2015) description of the links between the evolution in sensory hierarchy and epistemological shifts shows that sight is perceived to be in direct correspondence with one’s mind. Therefore, seeing is considered by many people to be an act of immediate perception that gives access to reality. In Campanelli’s (2010) words, ‘The immediacy, simultaneity, homogeneity, precision and speed of visual perception are opposed to the indirectness, the slowness and the imprecision of haptic perception of form, which works consecutively’ (126). 17 Animal caretakers are also often left out of the picture. This is, however, out of the scope of this chapter. 18 The expression ‘capacity to feel’ should remind the reader of the Aristotelian distinction between potentiality and actuality: a carer should be capable to feel but may not actually feel any concern or affection towards the person or object cared. This is also why Feder Kittay (2011) subdivides ‘care’ into ‘labor’, ‘disposition’ and ‘virtue’ (52). In a certain sense, the three categories express different degrees of actuality of the ‘capacity to feel’. 19 Interestingly, one of the possible etymologies of the German word for ‘to care’, pflegen, is the Old High German phlegan ‘to be responsible for something’ (Waitz 1982: 109). 20 N.B. Each impairment or situation of dependence has specific needs. Clearly, not all of them can be addressed by means of digital devices and most of them cannot be addressed by means of digital devices only. Even in the case of visually impaired users, the access to digital devices is possible through assistive technologies such as screen readers and braille displays, although these can be more easily disguised. It is also important to remember that the effective use of such devices comes at a price, which means both a monetary expense and an investment in terms of time to learn and practice.

References Adelman, R. D., et al. (2014), ‘Caregiver burden: A clinical review’, JAMA, 311 (10): 1052–60. Bastawrous, M. (2013), ‘Caregiver burden – A critical discussion’, International journal of Nursing Studies, 50 (3): 431–41.

88

Discourses of Care

Beer, D. (2009), ‘Power through the algorithm? Participatory web cultures and the technological unconscious’, New Media Society, 11 (6): 985–1002. Berry, D. (2011), The Philosophy of Software: Code and Mediation in the Digital Age, London: Palgrave Macmillan. Brune, J. A. and D. J. Wilson (2013), Disability and Passing: Blurring the Lines of Identity, Philadelphia: Temple University Press. Campanelli, V. (2010), Web Aesthetics: How Digital Media Affect Culture and Society, Rotterdam: NAi Publisher. ‘Care [Def. Noun 1 and 2; verb 1 and 2]’. (n.d.), in Oxford Dictionaries. Available online: http:​//www​.oxfo​rddic​tiona​ries.​com/d​efini​tion/​engli​sh/ca​re (accessed 16 August 2016). Carmody, T. (2015), ‘Disability and passing: blurring the lines of identity ed. by Jeffrey A. Brune and Daniel J. Wilson (review)’, Bulletin of the History of Medicine, 89 (1): 131–3. Carroll, T. J. (1961), Blindness: What It Is, What It Does, and How to Live With It, Boston: Little Brown and Co. Chamberlain, D. (2011), ‘Scripted spaces: Television interfaces and the non-places of asynchronous entertainment’, in J. Bennett and N. Strange (eds), Television as Digital Media, 230–54, Durham, NC: Duke University Press. Chappell, N. and Reid, C. (2002), ‘Burden and well-being among caregivers: Examining the distinction’, The Gerontologist, 42 (6): 772–80. DeFalco, A. (2011), ‘Moral obligation, disordered care: The ethics of caregiving in Margaret Atwood’s moral disorder’, Contemporary Literature, 52 (2): 236–63. DeFalco, A. (2012), ‘Caretakers/caregivers: Economies of affection in Alice Munro’, Twentieth Century Literature, 58 (3): 377–98. Duggan, M. and Brenner, J. (2013), The Demographics of Social Media Users – 2012, Washington, DC: Pew Research Center. Ellis, K. and Kent, M. (2008), ‘iTunes is pretty (useless) when you’re blind: Digital design is triggering disability when it could be a solution’, Media & Culture, 11 (3). Epstein, R. and R. L. Street (2011), ‘The values and value of patient-centered care’, Annals of Family Medicine, 9 (2): 100–3. Eurostat (2018), ‘Disability statistics – labour market access’, October 2018. Available online: https​://ec​.euro​pa.eu​/euro​stat/​stati​stics​-expl​ained​/pdfs​cache​/3442​0.pdf​ (accessed 13 August 2019). Fineman, M. L. A. (2002). ‘Masking dependency: The political role of family rhetoric’, in E. Feder Kittay and E. K. Feder (eds), The Subject of Care: Feminist Perspectives on Dependency, 215–44, New York: Rowman and Littlefield. Gastmans, C., B. Dierckx de Casterle and P. Schotsmans (1998), ‘Nursing considered as moral practice: A philosophical-ethical interpretation of nursing’, Kennedy Institute of Ethics Journal, 8 (1): 43–69. Haug, S. et al. (2015), ‘Smartphone use and smartphone addiction among young people in Switzerland’, Journal of Behavioral Addictions, 4 (4): 299–307.

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

89

Hodge, S. and C. Thetford (2015), ‘Finding your own way around: Experiences of health and social care provision for people with a visual impairment in the United Kingdom’, British Journal of Visual Impairment, 33 (3): 200–11. Hutchinson, A. (2017), ‘Top social network demographics 2017’, SocialMediaToday, 21 March. Available online: https​://ww​w.soc​ialme​diato​day.c​om/so​cial-​netwo​rks/t​op-so​ cial-​netwo​rk-de​mogra​phics​-2017​-info​graph​ic (accessed 15 August 2019). Feder Kittay, E. (2011), ‘The ethics of care, dependence, and disability’, Ratio Juris, 24 (1): 49–58. Langlois, G. (2013), ‘Participatory culture and the new governance of communication: The paradox of participatory media’, Television & New Media, 14 (2): 91–105. Lim, J. and B. Zebrack (2004), ‘Caring for family members with chronic physical illness: A critical review of caregiver literature’, Health and Quality of Life Outcomes, 2 (1): 50. Lin, T. T. C. and Y. H. Chiang (2017), ‘Investigating predictors of smartphone dependency symptoms and effects on academic performance, improper phone use and perceived sociability’, International Journal of Mobile Communication, 15 (6): 655–76. McGookin, D., S. Brewster and W. Jiang (2008), ‘Investigating touchscreen accessibility for people with visual impairments’, in Proceedings of the 5th Nordic Conference on Human-computer Interaction: Building Bridges, Lund, 18–22 October 2007, 298–307, New York: ACM. Meikle, G. and S. Young (2012), Media Convergence: Networked Digital Media in Everyday Life, Basingstoke: Palgrave Macmillan. Moor, L. W. and M. Miller (2003), ‘Older men’s experiences of living with severe visual impairment’, Journal of Advanced Nursing, 43 (1): 10–18. Murray, S. (2008), Representing Autism: Culture, Narrative, Fascination, Liverpool: Liverpool University Press. Murray, S. (2017), ‘Reading disability in a time of posthuman work: Speed and embodiment in Joshua Ferris’ the unnamed and Michael Faber’s under the skin’, Disability Studies Quarterly, 37 (4). Negrin, S. (1983), ‘Psychosocial aspects of aging and visual impairment’, in R. T. Jose (ed), Understanding Low Vision, 55–60, New York: American Foundation for the Blind. Newman, J. (2014), ‘To Siri, with love’, The New York Times, 17 October. Available online: http:​//www​.nyti​mes.c​om/20​14/10​/19/f​ashio​n/how​-appl​es-si​ri-be​came-​one-a​ utist​ic-bo​ys-bf​f .htm​l?_r=​0 (accessed 5 August 2016). Noddings, N. (2010), ‘Complexity in caring and empathy’, Abstracta, 6 (2): 6–12. Nyman, S. R., A. Innes and M. Heward (2016), ‘Social care and support needs of community-dwelling people with dementia and concurrent visual impairment’, Aging & Mental Health, 21 (9): 961–7. Palermo, M., ed (2009), ‘L’ADIL2 come strumento per la ricerca’, in Percorsi e strategie di apprendimento dell’italiano lingua seconda: sondaggi su ADIL2, 3–26, Perugia: Guerra.

90

Discourses of Care

Pariser, E. (2011), The Filter Bubble: What the Internet Is Hiding from You, London: Viking. Piccoli, A. (2016), ‘Phenomenology of software: The materiality of digital platforms from the perspective of the visually impaired’, MA diss., University of Amsterdam, Amsterdam, Netherlands. Pogliano, C. (2015), Senso lato. Il tatto e la cultura occidentale, Roma: Carocci. Purcell, E. (2013), ‘Narrative ethics and vulnerability: Kristeva and Ricoeur on interdependence’, Journal of French and Francophone Philosophy, XXI (1): 43–59. Ramani, K. K., S. R. Police and N. Jacob (2014), ‘Impact of low vision care on reading performance in children with multiple disabilities and visual impairment’, Indian Journal of Ophthalmology, 62 (2): 111–15. Reinhardt, J. P. (2001), ‘Effects of positive and negative support received and provided on adaptation to chronic visual impairment’, Applied Developmental Science, 5 (2): 76–85. Robeyn, I. (2005), ‘The capability approach: A theoretical survey’, Journal of Human Development, 6 (1): 93–114. Rueda, R. and H. Mehan (1986), ‘Metacognition and passing: Strategic interactions in the lives of students with learning disabilities’, Anthropology & Education Quarterly, 17 (3): 145–65. Seifert, A., A. Schlomann, C. Rietz and H. R. Schelling (2017), ‘The use of mobile devices for physical activity tracking in older adults’ everyday life’, Digital Health, 3: 1–12. Selznick, H. (2014), ‘Reflections and explorations of passing’, Disability Studies Quarterly, 34 (3). Sherry, M. (2004), ‘Overlaps and contradictions between queer theory and disability studies’, Disability & Society, 19 (7): 769–83. Söderström, S. and B. Ytterhus (2010), ‘The use and non-use of assistive technologies from the world of information and communication technology by visually impaired young people: A walk on the tightrope of peer inclusion’, Disability & Society, 25 (3): 303–15. Statista (2014), ‘Age distribution of active social media users worldwide as of 3rd quarter 2014, by platform’, Statista, 17 November. Available online: https​://ww​w.sta​ tista​.com/​stati​stics​/2748​29/ag​e-dis​tribu​tion-​of-ac​tive-​socia​l-med​ia-us​ers-w​orldw​ ide-b​y-pla​tform​/ (accessed 15 August 2019). Stewart, M. (2001), ‘Towards a global definition of patient centred care’, British Medical Journal, 322 (7284): 444–5. Uricchio, W. (2004), ‘Television’s next generation: Technology/interface culture/flow’, in L. Spiegel and J. Olsson (eds), Television after Television: Essays on a Medium in Transition, 163–82, Durham: Duke University Press. Waitz, H. (1982), ‘Die Etymologie von pflegen’, Modern Language Notes, 7 (4): 107–12.

Are Digital Platforms and Touchscreen Devices Effective Caretakers?

91

Wang, D., Z. Xiang and D. R. Fesenmaier (2016), ‘Smartphone use in everyday life and travel’, Journal of Travel Research, 55 (1): 52–63. Watkinson, S. and E. Scott (2004), ‘Managing the care of patients who have visual impairment’, Nursing Times, 100 (1): 40. White, G. R., G. Fitzpatrick and G. McAllister (2008), ‘Towards accessible 3D virtual environments for the blind and visually impaired’, in Digital interactive media in entertainment and arts: Proceedings of the 3rd international conference (DIMEA ’08), Athens, 10–12 September 2008, 134–41, New York: ACM. Wu, S. and L. Adamic (2014), ‘Visually impaired users on an online social network’, in Proceedings of SIGCHI conference on human factors in computing systems, Toronto, 26 April–1 May 2014, 3133–42, New York: ACM.

5

Making television accessible with audio description Kerr Castle

The Royal National Institute of Blind People (RNIB) defines audio description (AD) as a ‘commentary that describes body language, expressions and movements, making [a film or television] programme clear through sound’ (2016a). In An Introduction to Audio Description: A Practical Guide, AD expert and practitioner Louise Fryer understands AD as a form of ‘audiovisual translation’ (2016: 2–3), that is, the mediation of visual information as aural commentary for visually impaired viewers.1 Significantly, within the context of this edited collection concerned with the relation between media and care, Elena Di Giovanni notes that this translation ‘allows for the restoration of agency in the enjoyment of films and audiovisual texts by […] blind and partially sighted [viewers]’ (2014: 137) – an inclusive means by which they can follow, enjoy and participate in their favourite films and television shows. What AD intends to offer, then, is a comparable experience to viewing – an ‘enabling service’ which supports visually impaired audiences and helps them to consume audiovisual media in a different way (Fryer and Freeman 2012: 422). As Mariana Lopez, Gavin Kearney and Krisztián Hofstädter from the Enhancing Audio Description (or Enhancing AD) project confirm,2 ‘The main strength of AD is its potential to allow visually impaired audiences to construct a story that is alike the one experienced by sighted people’ (2016). The following chapter looks at AD for television from a practitioner’s perspective. Exploring the challenges of AD and how describers seek to produce emotive, immersive and entertaining AD texts, it is underpinned by two interviews with practitioner Jonathan Penny. In addition to describing in the theatre, Penny scripts AD for a leading provider of access services for broadcast television in the UK.3 I will focus exclusively on his description work for

Making Television Accessible with Audio Description

93

television throughout this chapter.4 Beginning with the basic principles of AD and how the service should operate, I examine some of its challenges, exploring debates around the describer’s role, what gets translated and different styles of description. While television AD can appear functional or lacking in creativity, I argue that it is at once a caring and creative practice. As the chapter progresses, I consider the experience currently offered by audio-described television programmes and how this alternative way of ‘seeing’ strives to remain artistic and expressive. Whereas the traditional AD model presents it as assistance, more thoughtful and inventive approaches indicate that description can also be a transformative process – a creative form in its own right. First, however, I wish to explain why AD for television – and, for that matter, the provision of all access services, including subtitling and signing – can be thought of as a mode of care.

Audio description as care The Scottish government’s ‘See Hear’ strategy (2014) – a framework for meeting the needs of people with a sensory impairment – states that people who have or develop sensory loss should be ‘able to access information and be supported to take the maximum possible control over living as independently as possible’ (2014: 2). While not explicitly concerned with television consumption, the See Hear framework acknowledges that we do not all experience the world in the same way and people who have challenges in terms of seeing and/or hearing can require alternative means of accessing information. Striving to confront and remove the obstacles those with sensory impairment face in everyday life – by improving access to health care, education, rehabilitation, employment and support services – the See Hear strategy illustrates the Scottish government’s awareness of its duty of care. A similar duty of care emerges in UK government legislation and Ofcom regulations concerning the provision of access services for blind, partially sighted and hard of hearing (HOH) television audiences. As the UK’s regulatory body for broadcasting, Ofcom is charged with ensuring viewers with one or more sensory impairment(s) are sufficiently catered for by broadcasters, including BBC, ITV/STV, Channel 4, Channel 5, Sky, UKTV and BT Sport. In Ofcom’s words, the addition of AD should ‘enhance meaning and enjoyment for blind or visually-impaired viewers’ (2017a), revealing information which is not immediately apparent from the soundtrack alone, so that blind or partially sighted viewers might engage more completely with a television text.

94

Discourses of Care

In suggesting that the provision of AD is a mode of care, it is instructive to consider the following statement from American feminist, educationalist and philosopher Nel Noddings: ‘How good I can be is partly a function of how you – the other – receive and respond to me’ (1984: 6, original emphasis). In Eva Feder Kittay’s opening keynote at the Discourses of Care: Care in Media, Medicine and Society Conference (2016), she similarly sought to position care as ‘a message’, which is to say that in order to achieve the act, the cared for must at once be ready to ‘receive’ and respond to messages ‘transmitted’ by the caregiver. Equally, the caregiver must be ready to receive and act upon signals and responses from the cared for. In this instance, the care ‘message’ is the act of translation itself, symbolic of Ofcom and broadcasters caring about blind and visually impaired television audiences. As an intervention, AD means to change how they experience content, offering people an accessible pathway which they can navigate unaided. In ‘The Ethics of Care, Dependence, and Disability’ (2011), Kittay writes, ‘The need for care, or as many would rather say “assistance”, is viewed not as a sign of dependence but as a sort of prosthesis that permits one to be independent’ (2011: 50, my emphasis). The See Hear framework developed by the Scottish government similarly champions this ideal of independent living, promoting new and existing support services which afford individuals with sensory impairments more control over their lives. While Kittay goes on to question the stigma attached to dependency and any approach to care which sees independence as the only ‘route to a dignified life’ (2011: 51), the focus of the service remains independence and the notion that care will be appreciated more readily under the guise of assistance. Feder Kittay considers how problematic choice can be for individuals whose cognitive function is seriously impaired, including her own daughter: ‘Coming to the question of disability from the position (or “role”) of a resolute carer of a beloved disabled person, I am invested in the idea that care is an indispensable, and even a central good – one without which a life of dignity is impossible, and which is itself an expression of a person’s dignity’ (2011: 52). AD, by its very nature, assists blind and visually impaired viewers in order that they might access, experience and enjoy the same audiovisual content as those without sensory impairment. This ‘enabling service’, like the prosthesis analogy evoked by Kittay, supports independent living and helps the AD user to experience stronger feelings of social and cultural inclusion. As Lopez et al. confirm, AD users find TV programmes more interesting, informative and enjoyable, while also experiencing an increase in confidence and self-esteem as they can

Making Television Accessible with Audio Description

95

discuss TV programmes without fear of having misinterpreted the narrative or without the need of a sighted friend to describe the content. (2016)

Not only does AD make television more engaging and meaningful for blind or partially sighted viewers, it can promote greater confidence and autonomy. Care, or ‘assistance’, in this instance, is about access and being afforded the same opportunity as other people in society to engage with topical and/or cultural resources. Indeed, one could contend that the describer voice articulates this notion of care, emerging as a reliable companion of sorts, trusted to accurately relay the most pertinent information on screen, and returning to accompany the AD user again and again as they watch their preferred shows. It is important to note that not all television programmes are audio described, meaning AD users often have to be more selective when it comes to deciding what to watch. As a mode of care, AD reveals those elements of a text that would otherwise be hidden from visually impaired audiences, helping to make content more inclusive, entertaining and rewarding, and eliminating the need to rely on others nearby. What becomes apparent through this chapter, however, is that while television AD is, in one sense, an obligation for broadcasters, it is facilitated by individuals – describers – who actively consider how best to care for those who use the service. While AD is recognized as a public good and an important provision for individuals who often face exclusion, it is nevertheless regulated and enforced. This is to say these individuals are tasked not only with making television content accessible but also with keeping it as entertaining and satisfying as they possibly can, with creating a unique experience specifically for the AD user. They have to appreciate and understand the reality of the blind or partially sighted viewer in order to produce the most responsive translation. With this in mind, I will now consider the AD service in action and the complexity of the describer’s task.

Describing television For those less familiar with AD and what it sounds like, Channel 4’s audiodescribed advert for the 2016 Summer Paralympics in Rio de Janeiro, Brazil, perfectly illustrates the importance of the service and its creative potential. Entitled We’re the Superhumans, this lavish celebration of the ‘Superhumans’ presents the sporting achievements that might be expected from the games alongside examples of individual athletes.5 The following extract features the

96

Discourses of Care

middle third of description from the advert [01:18–02:12],6 with Adam Hills from The Last Leg (Channel 4, 2012–) replacing the traditional describer voice: DESCRIBER: A starter’s pistol, Paralympic swimmers racing, then blade runner Richard Whitehead sprinting on a track. A rock band appears in the middle of a wheelchair basketball game. A guitarist with one hand rocks out, while the lead guitarist plays a solo with his feet. A blind footballer lifts a finger to his lips. FOOTBALLER: Shhh. DESCRIBER: Blind footballers score a goal. [CHEERING] DESCRIBER: Back of the net! SINGER: Yes, I can … DESCRIBER: A series of people shout, ‘Yes, I can!’, while showing their abilities, including Paralympic swimmer Ellie Simmonds, Paralympic sprinter Libby Clegg, a Paralympic shot-putter and cyclist, wheelchair multi-Paralympian David Weir, a pilot with no arms, a gymnast with one hand, a graduate with Down’s Syndrome, a ballerina with a prosthetic leg, three Paralympic power lifters, a deaf signer, and a break-dancer. Phew! Did you get all that?

With description being an integral element of the creative process of this advertisement from the early stages (Penny 2016a), the advert starts with Hills as the describer voice inviting viewers to ‘strap in’. Crucially, this invitation is directed to all viewers, and not just those who are blind or partially sighted. Enabling the sighted viewer to compare their way of seeing with the colourful, energetic and concise descriptions featured in the AD commentary, the advert simultaneously raises awareness that the description service is available and highlights how essential it is for existing users. Channel 4 also launched an accessibility survey in 2016, promoted with a television advertisement combining all three access services (subtitling, AD and signing), again highlighting the existence of these services and seeking viewer feedback to ascertain how they could be improved upon (RNIB 2016b). Distinct from the other access services – subtitling and signing – AD requires the describer to produce AD scripts from scratch (Fryer 2016: 3), reading the screen’s contents, then interpreting and prioritizing them. Scripts will usually include such details as location, characters present, current speaker, on-screen text or graphics, but also actor performance, facial cues, actions and reactions. What is perhaps most notable for the sighted audience in the Paralympics

Making Television Accessible with Audio Description

97

example is the number of quick-fire descriptions Hills has to race through, particularly towards the close of the highlighted extract. While this intentionally long list draws attention to the number and diversity of participants featured in a comedic way, it also usefully demonstrates the complexity of AD, constantly battling against time and fully aware not everything can be described. Consequently, some descriptions are out of synch, or are played in early in order to set up the following scene (e.g. reference to the blind footballer shushing), or even overlooked entirely (e.g. two fencers also feature in this sequence but are not mentioned in the description). Yet, as Louise Fryer notes, AD is ‘written for a listener, not a reader’ (2016: 2). While it might seem ideal to list every athlete and every action, it would also be extremely complicated for listeners to follow, overwhelming them with unnecessary detail and bringing unwanted attention to the description process. As Penny explains, AD is intended to be ‘a layer of the programme. […] Rather than describing all of the visuals, [the describer is] trying to aid comprehension’ (2016a). The describer is tasked, then, with immersing viewers in such a way that description becomes an accepted part of the programme, a valuable aid as opposed to a distracting intervention (Sweeney 2012). As Fryer and Jonathan Freeman note, ‘AD is at its best when the user is unaware of it’ (2013: 16). In order to achieve this effect, describers have to rework the television text in subtle ways, respecting the original tone and intentions of programme creators but appreciating that blind and partially sighted audiences process information differently and require an adaptation better suited to their needs. What they are presented with instead is a version of the featured programme, as opposed to a definitive translation, with the addition of AD ultimately changing the very architecture of the show. By this I mean that AD necessarily reshapes the television text in order to produce a more effective – and informative – aural experience.

The challenges of AD In an interview, Penny referred to a commonly held mantra of AD, applicable to any genre, as ‘What You Say Is What You See’ (2016a; also see Fryer 2016: 56). However, he went on to explain that, in reality, the describer’s task is more complex and restrictive. ‘First and foremost, AD traditionally sits in between gaps in the dialogue, which immediately restricts your capacity to paint a complete

98

Discourses of Care

picture for users – especially considering television description does not have the luxury of the audio introduction found in theatre AD’ (Penny 2016b). While AD in a live setting can take advantage of the flexible time constraints of the source material, Penny explained that with the rigid timings imposed by pre-recorded media, he always has to consider the balance between pieces of information that are vital to include and those that must be omitted, with the balance often skewed towards those to be left out. Consequently, this impacts not only what the practitioner is able to describe but also the way in which they describe it. The significance of how you ‘Say What You See’ can also be influenced by a multitude of other factors, including programme genre, text used on screen, the pace and tone of a scene, the presence of music, and the audience’s familiarity with a show’s characters, settings or programme conventions. For example, with a long-running soap like EastEnders (BBC, 1985–present), AD users familiar with the show will likely be able to distinguish between the ambient sounds of people in the Queen Vic pub compared to the Bridge Street ‘caff ’ before they’ve even been told where a scene takes place (Penny 2016a). This highlights how the describer’s role often goes beyond relaying visual information, requiring them also to accommodate the existing soundscape; to make their commentary accessible to different audiences with different levels of knowledge; and, where appropriate, to even reflect a show’s vernacular. On this last point – and without resorting to caricature – this might mean ensuring the AD remained in keeping with the ‘lingo’ of the fictional East London setting of Albert Square. Alongside the desire to marry the description with the characteristics of the programme being described, while objectivity is prioritized in the majority of description work – so as ‘to avoid any manipulation, spoon-feeding or a patronising attitude towards the target audience’ (Mazur and Chmiel 2012: 173) – it appears seemingly impossible for the describer not to flavour descriptions with their own style and approach to reading the screen. As Fryer confirms, ‘sight [itself] is inherently subjective’, and ‘in order to increase engagement and immersion in AV products, describers need to accept and move towards subjective description, authorised where possible by the work’s creator’ (2016: 172). In practice, however, as Penny noted, AD work for television requires describers to position themselves somewhere in between, stating, ‘You’ve just got to put yourself in the mind-set of the people who made the programme and try and describe it in a way that reflects what you think their intention is’ (2016a). Consequently, describers mediate what they believe programme makers have attempted to communicate, visually and aurally, in the original

Making Television Accessible with Audio Description

99

television text, utilizing supporting materials, like post-production scripts and episode synopses, to further aid comprehension and ensure greater accuracy (Penny 2016a). As Penny explained, ‘For almost all of the big dramas that we do, we would have the post-production script, which is really helpful because it’s not always obvious what the intention of a scene is’ (ibid.). The resulting programme is therefore an amalgam of the fully realized television product and the describer’s subsequent decoding and reinterpretation of it. This positions the describer as the ultimate decision maker for AD users, which in some instances means sacrificing content for clarity, such as omitting a character’s shocked reaction at the end of one scene in a soap opera in order to set up the context for the next scene. Yet, as Penny frequently stressed during our interviews, while the process can be restrictive, the describer aims – as much as possible – to produce engaging, creative, well-timed descriptions that promote interaction with, and continued immersion in, the television text. One such example of this is prematurely relaying details of a physical comedy performance so that the end of the description coincides with the laughter track (Penny 2016b). This keeps the AD viewer ‘in’ the programme and ensures they get the same opportunity to get the joke. Similarly, describing actors’ performances in terms of their ‘symptoms’ (ibid.) or physical cues – compared to bluntly stating that someone is happy, sad or angry – allows the AD user to read and interpret the bodily signals given off by the individual, as the sighted audience would, and formulate their own assessment of what those signals might mean.

The language of describing An example of this occurs in the following sequence from EastEnders (ep.5330), as a troubled Grant Mitchell (Ross Kemp) struggles to deal with the events which brought him back to Albert Square. The sequence [24:40–26:15] starts with Grant being chastised by Ian Beale (Adam Woodyatt), who refuses to offer financial help to Grant after discovering that he demanded money from Ian’s mother, Kathy Sullivan (Gillian Taylforth), earlier that day: IAN: [HE SHOUTS ANGRILY] You’re supposed to be here to help Ben. I mean, have you seen the state of your brother? I mean, he needs your help, your family needs your help. Why don’t you, for once in your pathetic little life, do something good?!

100

Discourses of Care

DESCRIBER: Ian swallows, as though surprised by his own outburst. Grant stares at him for a moment, then looks down at Jane on the sofa. He turns back to Ian then walks calmly past him and towards the front door. Grant stands on the edge of the Square, Phil watching him from an upstairs window. BELINDA: Grant! DESCRIBER: Belinda hurries over. BELINDA: You, er, you fancy finishing that drink sometime? GRANT: You are a very beautiful woman … BELINDA: Flatterer. GRANT: … and you shouldn’t come anywhere near me. BELINDA: Your loss. DESCRIBER: She turns on her heel, slightly stung but wearing a coquettish smile. Grant stares over at number 55, then looks away and starts to walk off. Phil’s come out of the back gate. PHIL: Grant! Grant! DESCRIBER: Phil’s out of breath. Grant stops and the brothers’ eyes meet for a moment across the Square, but Grant’s jaw is set, and he turns away and continues onto Bridge Street.

What makes this scene particularly interesting is the range of emotions on display, each communicated subtly in the AD commentary. Indeed, we witness Ian’s instant regret, Grant’s anger and disappointment, the dented pride of Belinda (Carli Norris), and the continued unravelling of the relationship between Phil (Steve McFadden) and his brother Grant, who blames Phil for their mother’s death. Each description works to complement the main dialogue and, where possible, allows space for silence, particularly between the feuding brothers. The language used pertains to a very different way of engaging with the story, often operating in the same way that a screenplay is charged with activating the visual elements of a story for its reader. As opposed to the cognitive process of the sighted viewer, who possibly reads the screen’s everchanging elements subconsciously, AD represents a more conscious approach, leaving space for interpretation and elaboration by the AD user. In An Introduction to Audio Description, Fryer considers G. A. Miller’s research into working memory capacity (1956), and the subsequent development of Miller’s research into cognitive load theory by John Sweller (1988), noting, ‘Anecdotal reports suggest that AD increases cognitive load’ (2016: 29). She continues, ‘Complex detail leads to sensory overload, destroying presence through fatigue’ (2016: 29). In essence, Fryer explains how working memory can be

Making Television Accessible with Audio Description

101

overstretched, either because of the complexity of the message, the medium of communication and/or the way in which the message is communicated, or the (lack of) expertise of the individual (2016: 30). Consequently, AD has to be aware of the ‘load’ it places on its users, allowing them time in which to process the actions or details being described, as well as leaving space/time for the existing soundscape. As Ofcom agrees, ‘Judgement is needed in striking an appropriate balance between the amount of detail that is conveyed, and the risk of overburdening the audience with detail and detracting from the enjoyment of the programme’ (2016). In this case, AD enables the user to better engage with further emotional aspects of the text, to empathize with Grant’s conflict or share in Phil’s evident disappointment. An alternative example of the language of describing presents itself in South Korea: Earth’s Hidden Wilderness (BBC 2018). This documentary, which looks at traditional ways of life in South Korea’s remotest areas, is tasked with bringing the stories, landscapes, flora and fauna of the country to life. This short extract [43:30–44:32], in which a local fisherman traverses mud in search of the amphibious mudskipper fish, usefully illustrates AD’s need for functional yet evocative language, promptly relaying the fisherman’s every action while simultaneously affording the viewer time in which to construct an image of the scene in their mind’s eye. NARRATOR: Mudskippers, although hardly considered a delicacy, are eaten. They are also used in Chinese medicine, and there is a profit to be made for this fisherman. DESCRIBER: Wearing a grey cap, the fisherman prowls through the grasses, a long pole resting on his shoulder as he casts his eye over the mudflat. His muddy fingers let go of a four-barbed hook. He turns his head, revealing his watchful, vigilant eyes. He pushes on a little further on his board, then casts his hook off from the end of his pole and catches a mudskipper! With a splash of mud, the small fish swings on the line to the fisherman. A mudskipper with distinctive blue spots beats a hasty retreat, slithering headfirst into a hole, while the fisherman bags his catch.

Verbs like ‘prowl’ and ‘slither’ here not only denote motion but can reveal intent and other information, such as physical traits – the fisherman lying in wait for his catch or the amphibious mudskipper sliding along the ground. Similarly, the description of the fisherman’s ‘watchful, vigilant eyes’ suggests an instinctive, almost animalistic alertness as he stalks the mudskipper fish, ready to pounce

102

Discourses of Care

any second. The phrase ‘beats a hasty retreat’ is also interesting in that the AD commentary aligns itself with the anthropomorphic tendencies inherent in the nature documentary, the language of describing helping to develop the character of the mudskipper. As Fryer suggests, The nature documentary long ago left behind the travel-and-safari style in favour of Walt Disney-style drama, so that, in an anthropomorphised way, animals play out human themes such as survival against the odds, territorial conflict and love stories. In order to achieve this, the camerawork is less than objective and so, too, is the narrative form with which the AD will interact. (2016: 111)

Accordingly, AD can be used to support the themes and style of the featured programme or is required to do so by virtue of the way in which the programme has been produced. The evocative language featured in this sequence works to reinforce and punctuate the fisherman’s narrative, while humanizing the pursued mudskipper fish. The resultant effect in this instance is akin to a short story which is primarily told through AD yet adds to the aesthetic of the entire programme.

Style Perhaps one of the most significant debates currently in AD is that of style – namely, how should describers speak to viewers/listeners and relay information on their behalf? AD’s relatively formal mode of address has been a mainstay of the service since its inception,7 but as television has evolved, along with the literacy of television audiences, AD’s style of delivery has been drawn into question. television AD is often understood in contrast to ‘cinematic’ description, which describes not only what is taking place, where and with whom, but how a scene has been realized technically, including details such as camera movements, framing and shot transitions. Fryer and Freeman’s investigation into the use of cinematic language in the description of film suggests that ‘cinematic AD makes the audience viewpoint clear[er]’ (2012: 416), enabling the audience to better understand their physical relation to the moving image and the added value of a film’s visuals. However, in an interview, Penny suggested that, in his experience with AD for television, describing a ‘tracking shot’, say, might be ‘alienating’ for some viewers not familiar with such terminology (2016a): ‘It’s too analytical, and for someone [...] just trying to be “in” the story, it could be jarring.’ While a film is likely to allow space to linger on shots and let the visuals breathe, the same

Making Television Accessible with Audio Description

103

is not always true for television, which usually requires economical and concise description, quickly shifting from one scene to the next. One alternative highlighted by Penny is a more conversational approach, ‘basically imagining that the audio describer is not bodiless but is actually someone sitting next to you’ (2016a) in effect, a sort of companion. An example of this style in action is with a game show like Deal or No Deal? (Channel 4, 2005–16). As players reveal the monetary values of their boxes during the show – with red being the high-value boxes and blue the low – the describer could simply state the colour and box value, for example, ‘Red, £20,000’, in a very formal, detached way. However, instead, the AD commentary adopts a more performative style, as if it were a part of the game. While the contestant might preface the opening of their box with a breathy, ‘I hope it’s a blue, Karen’, thereby embracing the show’s light-hearted and informal tone, the describer might then announce the ‘reveal’ with an excited, ‘But it’s a red!’ before disclosing the box’s value, to try and keep the AD user in the moment. While Ofcom’s Code on Television Access Services states that ‘[AD] delivery should be steady, unobtrusive and impersonal in style […] so that the personality and views of the describer do not colour the programme’ (2017a), they later concede: However, it can be important to add emotion, excitement, lightness of touch at different points in different programmes to suit the mood and the plot development – the style should be matched to the genre of the programme. (ibid.)

Accordingly, less formal styles of description appear to particularly suit entertainment, lifestyle and reality formats, experienced as a seemingly more natural extension of the original television texts. The Enhancing AD project presents a further alternative to traditional AD. As Lopez et al. explain, The Enhancing Audio Description project explores how sound design techniques and spatial audio can be used to transform audio-visual experiences for visually impaired audiences, whilst also turning the AD soundtrack from a compliance exercise into an intrinsic part of the creative process. (2016)

In a subsequent article by Lopez for The Independent, Enhancing AD’s research aim is explained further: The project aims to create an accessible soundtrack that is crafted in the production and post-production stages of film and television. This means that

104

Discourses of Care

instead of having an external company creating a verbal commentary, film teams can work on creating an accessible version that follows the ‘vision’ of the filmmakers. This ultimately helps to make the film engaging to everyone, regardless of their sight condition. (2017)

Central to Enhancing AD’s research is the replacement of the traditional describer voice and conventional forms of description, with what Lopez et al. have called the ‘I-voice’ (2016). A form of first-person description, I-voice ‘refers to the use of voice over by one of [a film or television programme’s] characters to express her/his inner thoughts and help the identification of audiences with the character in question’ (ibid.). Essentially, were the Enhancing AD method to be utilized during the scripting and production of a programme like Sherlock (BBC 2010–17), Benedict Cumberbatch would replace the role of describer, instead communicating his actions as Sherlock, the actions of those around him and other details pertinent to the telling of a scene as a sort of interior monologue. Furthermore, the addition of ‘audio spatialisation’ (Lopez 2017) during postproduction – for example, separating the position of character voices in order to better indicate their position in a room – ‘[would allow] visually impaired audiences to differentiate characters more easily, without the need for verbal descriptions’ (ibid.). The intended result of the Enhancing AD approach is an accessible version of a film or television show which follows more directly the ‘vision’ of its creators (ibid.), with accessibility incorporated into a production from the very beginning. Different from the prosthesis analogy utilized previously, Enhancing AD encourages the development of a ‘user-centred’ approach to accessibility, with the intention being to afford audiences greater choice in terms of their preferred access strategies (Lopez et al. 2016). While I question the suggestion that current AD provision for film and television is little more than a ‘compliance exercise’ – I have already evidenced numerous ways in which traditional AD for television is thoughtful, creative and caring in its realization – Enhancing AD proposes a new, supposedly more universally accessible form of creative practice. In thinking about questions of media and care, this approach means to reshape the audiovisual text in such a way as to make it effective and insightful to all viewers, not simply those who are visually impaired. Rather than an assistance, Enhancing AD proposes an evolution of film and television production methods to create more authentic (i.e. director-led) and accessible aural narratives. Similarly, Accessible Media Inc. (AMI), a Canadian media company specializing in television content for blind and partially sighted viewers, have

Making Television Accessible with Audio Description

105

also developed their own style of description in the form of Integrated Described Video (IDV). Like Enhancing AD, description is an integral part of the production process, from scripting to post-production, in order that ‘traditional [description] is not required after the programme has been packaged’ (AMI 2016a). However, IDV is specifically incorporated into ‘factual programming, documentaries, field production pieces and interstitials’ (AMI 2016b: 7), as opposed to films or television dramas. As AMI explain, IDV is not simply [AD] that is added during the production. It includes more information than verbal description of the visuals, such as environmental sounds, audio effects, music and pacing. It’s meant to be part of the production and meant to be for everybody. (2016b: 13)

Fundamentally, on-screen talent and/or any voice-over narration will identify ‘key visual elements’ verbally (AMI 2016a), as well as contextualizing unclear elements from the television soundtrack for blind and partially sighted viewers. The intended result is a television text which is immediately accessible to visually impaired audiences and can be enjoyed by viewers without sensory impairment also, with the traditional describer voice not impinging on their viewing experience, nor isolating the AD user. The sample of AD styles and alternatives featured in this section, including cinematic description, conversational AD, the Enhancing AD method and Integrated Described Video, are significant in that they acknowledge not all AD users are the same. Alongside of traditional AD, they mean to offer users greater variety, facilitating different kinds of satisfying different needs or preferences. The introduction of alternatives to television AD in the future is an interesting prospect, and while some will likely prefer AD for television in its current form, the proliferation of access solutions for blind and partially sighted audiences marks a significant step forward. Inevitably, television AD will evolve and have to move beyond the guidelines produced and the feedback recorded during its inception.

Conclusion: The future of AD As this chapter has demonstrated, describers seek to activate television texts for AD users in immersive, emotive, engaging and entertaining ways, not simply offering a stripped back, nuts-and-bolts version of television but an alternative

106

Discourses of Care

realization of it. As Giovanni explains, viewers are observers: ‘they perceive […] visual stimuli and cognitively elaborate [a text’s] reception’ (2014: 137). In the same way that sighted viewers unconsciously read body language, movements and expressions, AD users have a different way of experiencing the world and require the presentation of different ‘elements’ to infer and develop their own meanings and understanding of the text. AD enables them to do this, and as such should be applauded and discussed more widely as a legitimate remediation of television which promotes audience equality. AD expert Joel Snyder perfectly encapsulates AD’s significance, explaining, AD uses words that are succinct, vivid, and imaginative to convey the visual image that is not fully accessible to a segment of the population and not fully realised by the rest of us – sighted folks who see but who may not observe. (2007: 100)

Comparing AD to ‘a kind of literary art form […] a type of poetry’ (2007: 100), Snyder highlights how the AD text can enable all audiences to understand more clearly. Moreover, his notion of the poetic aspect of AD encapsulates the subtleties of word craft, pacing and inference required from it, producing rhythm, momentum and affording space for the viewer/listener to engage with a text more completely. Snyder’s comments further reinforce that traditional AD should not be overlooked as ‘a dynamic narrative form’ (Mills 2018) in its own right and is worthy of attention beyond its means of production. In an article for The Spectator which jokingly describes the ‘dangers’ of taking a blind person to see Fifty Shades of Grey (Universal Pictures 2015), visually impaired journalist Selina Mills poignantly concludes, ‘Tools created for disabled people are not simply utilitarian and functional, but things that can enhance all of our experiences, whether or not we are disabled’ (2018). Mills recalls, My sighted sister and I went to see the first Fifty Shades of Grey a few years back, and even though we both knew the film was going to be bad, I convulsed so hard with laughter that I fell off my seat at the cinema. She was mortified. Afterwards, I had to explain that hearing American accents having rampant sex – ‘Antastasia! Christian!’ – while a rather bored English voice describes the scene with the enthusiasm of someone reading a tax return was very hard. (2018)

As for the service itself, increased public awareness of its existence and increased levels of choice when it comes to the number of television programmes that are audio described, as well as different styles of description, appear crucial. Ofcom

Making Television Accessible with Audio Description

107

regulations currently state that 10 per cent of content broadcast by the UK’s leading domestic broadcasters, including BBC, ITV/STV and Channel 4, must be audio described. This can be compared to a far more substantial subtitling requirement of 100 per cent for BBC output and 90 per cent for ITV/STV and Channel 4 (Ofcom 2017b). Originally influenced by the ‘paucity of affordable technology able to receive the service’ in the 2003 Audetel Communications Act (Fryer 2016: 19), this 10 per cent quota remains unchanged despite the increasing affordability of AD-supported digital platforms. Although a voluntary AD target of 20 per cent is consistently surpassed by the three broadcasters listed (Ofcom 2017b), blind and visually impaired audiences remain greatly underrepresented.8 Although not every genre lends itself to AD (Ofcom 2017a) – particularly news and current affairs programmes, quizzes and panel shows, which simply have less space and/or less of a need for description to begin with – this disparity between the current levels of AD achieved and subtitling needs to be addressed. As a mode of care, AD assists blind and partially sighted viewers in order that they might independently experience and enjoy the same television content as those without sensory impairment. As a means of social and cultural inclusion, its function can initially be understood as that of parity, affording AD users comparable information to that received by the sighted audience so as to make programmes more accessible and (potentially) rewarding. Yet, as I have illustrated in this chapter, television AD can also be thoughtful, expressive and poetic, offering users a different experience of television, as opposed to simply a supplementary or compensatory one. Care is present in each and every sentence, in the translation and articulation of visual signals as descriptive or emotive words, organized in such a way as to best accommodate the AD user’s particular way of experiencing the world. While alternatives to traditional AD will likely impact and evolve our understanding of what accessibility can look like, television AD should be celebrated in its current form, both for the efforts of describers and the quality of their work, and the access which the service successfully provides to thousands of AD users across the UK. For the moment, AD for television offers a particular model of care – assistance towards independence – but different approaches to AD suggest that thinking about how others access audiovisual texts can be a creative act in itself. The intention to care for those who require AD can in turn allow us to think about how all members of the audience experience and understand the television text.

108

Discourses of Care

Notes 1 An experienced audio describer herself, Fryer’s 2016 publication was the first of its kind to address the practice in such detail, with the resulting text now serving as a manual of sorts for practising describers, old and new. 2 Enhancing Audio Description is an AHRC-funded project conducted by the University of York and Anglia Ruskin University. The research ‘seeks to explore how sound design techniques can be used to rethink accessibility to film and television for visually impaired audiences’ (Enhancing Audio Description 2018). 3 The terms ‘audio describer’ and ‘describer’ can refer to both those who script and voice AD texts; although Penny doesn’t do television voice work, for the purposes of this chapter the term ‘describer’ will be used throughout. 4 The interviews took place in August 2016. The opinions expressed are Penny’s own and do not express the views of his employer. 5 For analysis of the representational politics of Paralympians, see Goggin and Newell (2000). See also R. Hemmings for further discussion of the long-standing prevalence and problems with overcoming narratives and disability. 6 Note, line breaks indicate pauses in the description for music or ambient sounds. 7 The ‘language’ of AD was determined during the original development of the Audetel service: ‘Between July and November 1994 an ambitious trial of a full Audetel service operated on peak-time ITV and BBC television, delivering over 6 hours of described programming a week to 140 receivers throughout the UK, mostly situated in the homes of visually impaired people. The service was carefully monitored to record practical engineering, logistical and editorial experiences as well as to generate a wealth of feedback from the users on receiver ergonomics and on the quality of the descriptions themselves. The trial was an overwhelming success, demonstrating not only the practicability of regular broadcasts, but also enormously increased comprehension and enjoyment among blind and partially sighted viewers’ (ITC 2000: 5). 8 In 2017 (Q1 and Q2), BBC One audio described 21.7 per cent of broadcast content, Channel 3 (ITV/STV) audio described 17.5 per cent and Channel 4 audio described an impressive 34.7 per cent (Ofcom 2017b).

References Accessible Media Inc. (2016a), ‘What is described video?’ Accessible Media Inc. [Online] 2 November. Available online: http://www.ami.ca/what-described-video (accessed 16 February 2018).

Making Television Accessible with Audio Description

109

Accessible Media Inc. (2016b), ‘Integrated described video best practices’, Accessible Media Inc. [PDF] April. Available online: http://www.ami.ca/what-described-video (accessed 16 February 2018). Enhancing Audio Description (2018), ‘Enhancing audio description’, [Online]. Available online: http://enhancingaudiodescription.com (accessed 16 February 2018). Feder Kittay, Eva (2011), ‘The ethics of care, dependence, and disability’, Ratio Juris, 24 (1): 49–58. Feder Kittay, Eva (2016), ‘Opening Keynote’, in Discourses of Care: Care in Media, Medicine and Society Conference, Glasgow, UK, 5–7 September 2016. Fryer, Louise (2016), An Introduction to Audio Description: A Practical Guide, London: Routledge. Fryer, Louise and Jonathan Freeman (2013), ‘Visual impairment and presence: Measuring the effect of audio description’, Inputs-Outputs Conference 2013: An Interdisciplinary Conference on Engagement in HCI and Performance, ACM, New York, USA, article no.4. Fryer, Louise and Jonathan Freeman (2014), ‘Can you feel what I’m saying? The impact of verbal information on emotion elicitation and presence in people with a visual impairment’, in A. Felnhofer and O. D. Kothgassner (eds), Challenging Presence: Proceedings of the 15th International Conference on Presence, pp. 99–107. Giovanni, Elena Di (2014), ‘Visual and narrative priorities of the blind and non-blind: Eye tracking and audio description’, Perspectives, 22 (1): 136–53. Goggin, Gerard and Christopher Newell (2000), ‘Crippling Paralympics? media, disability and Olympism’, Media International Australia, 97: 1. Available online: https://doi.org/10.1177/1329878X 0009700110 (accessed 28 August 2019). ITC (2000), ‘ITC guidance on standards for audio description’, [Online]. Available online: http:​//aud​iodes​cript​ion.c​o.uk/​uploa​ds/ge​neral​/itcg​uide_​sds_a​udio_​desc_​ word3​.pdf (accessed 19 August 2016). Lopez, Mariana (2017), ‘How a new technology will help blind people “see” at the cinema’, The Independent, [Online]. 30 November. Available online: http:​//www​.inde​ pende​nt.co​.uk/n​ews/n​ew-ap​p-tec​hnolo​gy-he​lps-b​lind-​peopl​e-see​-at-c​inema​-audi​ o-des​cript​ion-a​80720​21.ht​ml (accessed 16 February 2018). Lopez, M., G. Kearney and K. Hofstädter (2016), ‘Enhancing audio description: Sound design, spatialisation and accessibility in film and television’, in Reproduced Sound Conference, Southampton, UK, 15–17 November 2016. Mazur, Iwona and Agnieszka Chmiel (2012), ‘Audio description made to measure: Reflections on interpretation in AD based on the pear tree project data’, in A. Remael, P. Orero and M. Carroll (eds), Audiovisual Translation and Media Accessibility at Crossroads: Media for all 3, Rodopi, Amsterdam. Miller, G. A. (1956) ‘The magical number seven, plus or minus two: Some limits on our capacity for processing information’, Psychological Review, 63 (2): 81.

110

Discourses of Care

Mills, Selina (2018), ‘The dangers of taking a blind friend to see Fifty Shades of Grey’, The Spectator. [Online] 24 February. Available online https​://ww​w.spe​ctato​r.co.​uk/20​ 18/02​/the-​dange​rs-of​-taki​ng-a-​blind​-frie​nd-to​-see-​fifty​-shad​es-of​-grey​/ (accessed 25 February 2018). Noddings, Nel (1984), Caring: A Feminine Approach to Ethics and Moral Education, Berkeley and Los Angeles, CA: University of California Press. Ofcom (2016), ‘Television access services report 2015’, [Online] Available online: http:​//sta​kehol​ders.​ofcom​.org.​uk/bi​narie​s/res​earch​/tv-r​esear​ch/ac​cess-​servi​ce-re​ ports​/acce​ss-re​port-​2015.​pdf (accessed 19 August 2016). Ofcom (2017a), ‘Ofcom’s code on television access services’, Ofcom. [PDF] 30 January. Available online: https​://ww​w.ofc​om.or​g.uk/​tv-ra​dio-a​nd-on​-dema​nd/br​oadca​st-co​ des/t​v-acc​ess-s​ervic​es (accessed 16 February 2018). Ofcom (2017b), ‘TV access services 2017: Q1 and Q2’, Ofcom. [Online] 12 October. Available online: https​://ww​w.ofc​om.or​g.uk/​resea​rch-a​nd-da​ta/mu​lti-s​ector​rese​arch/​acces​sibil​ity-r​esear​ch/tv​-acce​ss-se​r vice​s-201​7 (accessed 16 February 2018). Penny, Jonathan (2016a), Interview 1. Interviewed by Kerr Castle. [Dictaphone] Gilmorehill Centre, 9 University Avenue, Glasgow. 8 August 2016. Penny, Jonathan (2016b), Interview 2. Interviewed by Kerr Castle. [Dictaphone] Gilmorehill Centre, 9 University Avenue, Glasgow. 12 August 2016. RNIB (2016a), ‘Audio description (AD)’, [Online] Available online: http:​//www​.rnib​.org.​ uk/in​forma​tion-​every​day-l​iving​-home​-and-​leisu​re-te​levis​ion-r​adio-​and-f​i lm/a​udio-​ descr​iptio​n (accessed 28 July 2016). RNIB (2016b), ‘Channel 4 launches an accessibility survey’, [Online] Available online: http:​//www​.rnib​.org.​uk/ch​annel​-4-la​unche​s-acc​essib​ility​-surv​ey (accessed 19 August 2016). Scottish Government (2014), See Hear. Scottish Government. [PDF] 24 April. Available online: http:​//www​.gov.​scot/​Publi​catio​ns/20​14/04​/7863​/0 (accessed 16 February 2018). Snyder, Joel (2007), ‘Audio description: The visual made verbal’, The International Journal of The Arts in Society, 2 (2): 99–104. Sweeney, Mary (2012), ‘3  challenges of audio description’, Ericsson. [Online] Available online: http:​//www​.eric​sson.​com/b​roadc​astan​dmedi​a/wha​t-we-​think​/blog​/3-ch​allen​ ges-o​f-aud​io-de​scrip​tion/​ (accessed 28 July 2016).

Filmography EastEnders (BBC, 1985–), Episode 5330. [TV programme] BBC, BBC One, 9 August 2016, 19: 30.

Making Television Accessible with Audio Description

111

South Korea: Earth’s Hidden Wilderness (BBC, 2018), Episode 1. [TV programme] BBC, BBC Two, 11 February 2018, 20: 00. Sweller, J. (1988), ‘Cognitive load during problem solving: Effects on learning’, Cognitive Science, 12 (2): 257–85. We’re the Superhumans (Channel 4, 2016) [TV/online advertisement] Channel 4, 14 July 2016. Available online: https://youtu.be/EKGOWavFvHc (accessed 16 February 2018).

6

Controversies of care Technology, caregivers and ‘autiebiography’ Hannah Tweed

The development of assistive technology is increasingly recognized as part of people’s care arrangements – from explicit mention in the Scottish Government’s Health and Social Care Delivery Plan (2016: 14), and the Technology Enabled Care Programme (2014–), to the range of software and apps designed to assist disabled people and those living with long-term conditions. Similarly, online forums for autism support and activism, such as Wrong Planet, ‘a web community designed for individuals […] with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences’ (‘About Wrong Planet’, https://wrongplanet. net/), are widely accepted as having a positive impact, for the development of both the neurodiversity movement and public perceptions of autism. However, supported communication, where a person’s communication is mediated and facilitated by another person and a technological aid, remains a contentious area within disability studies – despite being widely accepted as a useful tool within independent advocacy.1 Focusing on Lucy Blackman’s autobiography Lucy’s Story (1999), written via facilitated communication, and Blackman’s explicit critique of people’s attitudes towards her writing, I argue that the suspicion with which supported communication is held within cultural disability studies is both problematic and ignores developments in support for and with people with autism (and neurodiversity more broadly). Instead, I suggest that, in keeping with the examples proffered by Kerr Castle and Anna Piccoli earlier in this collection, Lucy Blackman’s Lucy’s Story is an example of autistic authorship that engages, both philosophically and aesthetically, with the complexities of care relationships, and challenges established expectations of autobiography, authorship and interdependency.

Controversies of Care

113

Representations of autism Many popular cultural depictions of autism are fundamentally limiting in their representations of disability (e.g. Raymond Babbitt in the film Rain Man (1988), widely considered the urtext of autism representation): first by the established trend of neurotypical people or characters speaking for or in place of autistic individuals, and second by the prioritizing of the views of the medical establishment at the expense of individual characterization and expression. Other recurring characteristics of autistic individuals in literature and film include savant abilities; a lack of self-reflexive thought; interests in set topics (maths, numbers and patterns); and the inability to communicate with neurotypical characters. When interest in maps becomes shorthand for a character’s savant abilities and disinterest in social interactions, these stereotypes have real potential to affect people with autism. In contrast to this, texts such as Lucy’s Story suggest some of the ways in which literary writing also has the capacity to eschew or manipulate the dominant stereotypes of depictions of autism and genre conventions and represent alternative, more complex understandings of autism, care and communication. While comparatively few novels, television programmes, films, plays or poetry collections by openly autistic writers are produced by mainstream publishers or companies, there are long-standing traditions of autistic autobiographies, from Temple Grandin’s Emergence: Labeled Autistic (1986) to the recent publishing success of Naoki Higashida’s The Reason I Jump (2007; trans. English 2013) and Fall Down Seven Times, Get Up Eight (2013; trans. English 2017). However, these texts are far from unmediated, and their paratexts are rooted in neurotypical suspicion of autistic authorship and communication. They frequently involve allographical prefaces by medical professionals, certifying the diagnosis and self-identification of the authors (e.g. Grandin’s Emergence (1986); Lucy Blackman’s Lucy’s Story: Autism and Other Adventures (1999); Luke Jackson’s Freaks, Geeks, and Asperger’s Syndrome (2002), among others). This practice of mediated discourse, both in terms of limited publishing opportunities and explicitly mediated ‘autiebiographies’ (autistic life writing),2 is shifting in the twenty-first century due to the rise of digital publication platforms and online media. This chapter probes the role of co-writers, carers and cultural gatekeepers in facilitated communication, with a focus on digital interdependency, expanding Eva Feder Kittay’s broader discussion of interdependency and

114

Discourses of Care

care. I explore some of the problems associated with defining personhood and selfhood in terms of the ability to write or communicate verbally, and the complexities of communicating non-verbal experience via prose and assistive technology.

Definitions and terminology As part of increased media focus on autism, the diagnostic terminology surrounding autism has become commonplace, sometimes at the expense of reflections of lived experience. While I discuss ‘autism’ throughout this chapter, following the most commonly used term of reference in Wrong Planet, the term encompasses such a broad and varied range of characteristics and experiences that it becomes an arbitrary categorization. Autism has been varyingly described as a neurological disorder (Holmer Nadesan 2008: 78), a lifelong developmental disability (National Autistic Society, ‘What is Autism?’) and a triad of social, communicative and imaginative impairments (Wing and Gould 1979: 12; Happé and Vital 2010: 30). It entered its current diagnostic usage in Europe and America in the 1940s, following the publication of Leo Kanner’s ‘Autistic Disturbances of Affective Contact’ (1943) and Hans Asperger’s ‘Autistic Psychopathy in Childhood’ (1944), but it remained an obscure term until the 1960s, when Bruno Bettelheim’s influential (and subsequently discredited) ‘refrigerator mother’ theory began to circulate. Bettelheim posited that autism was caused by a mother’s subliminal rejection of their child, which the child sensed, and responded to by rejecting both the mother and people at large (1972: 17–18). This pattern of mother blame has endured in literary representations of autism and cognitive difference long after the theory has been discredited. The classification category and diagnostic criteria associated with autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM), one of the most influential English-language psychiatric diagnostic manuals, dictates rates of diagnosis across much of the Englishspeaking world in the twentieth and twenty-first centuries. The widening of the DSM diagnostic criteria for autism in 1980, 1987, 1994 and 2013 was matched by corresponding jumps in diagnosis, which led to greater public discussion of the condition, and increasingly hysterical references to an ‘epidemic’ of autism (Grinker 2009: 1–5; Miller et al. 2013: 200–10). In line with Bérubé and Nussbaum’s challenges of the term ‘normal’, and popular discourse on online autistic forums, I have chosen to use the neologism

Controversies of Care

115

‘neurotypical’ to refer to individuals without autism or a cognitive disability (Nussbaum 2006: 125–6; Bérubé 2010: 97–9). Neurotypical or ‘NT’ is the preferred term of a significant number of autistic individuals to describe people without autism or a comparable cognitive difference, including Jean Kearns Miller, an autistic author whose work offers a powerful challenge to prevailing stereotypes about autism through her creative autobiographical writing (stemming from an online support forum) (Kearns Miller et al. 2003). As such, it seems appropriate to use language that has evolved from within online and literary autistic communities, alongside the more pervasive medical language of diagnosis.

Care and communication: Lucy’s Story Writing as part of the first wave of ‘autiebiographies’ (life writing by people with autism, reflecting – at least in part – on their experiences with the autistic spectrum), Australian Lucy Blackman composed Lucy’s Story: Autism and Other Adventures (1999). Lucy’s Story was written over a period of several years, via facilitated communication (FC), before eventually being published with Jessica Kingsley Publishers – the imprint which has published a significant percentage of contemporary English-language autiebiographies. FC is a highly controversial technique for enabling non-verbal autistic individuals to communicate: it relies on the use of a facilitator, usually a carer, family member or teacher, who aids the individual they are supporting as that person points to or selects letters or symbols on a keyboard in order to communicate. This assistance is then gradually reduced, until, ideally, the individual can type independently. According to Jessica Kingsley Publishers, Blackman ‘eventually came to type on a computer with no physical support’, and to ‘complete her BA (Hons) in Literary Studies’ (http​s://w​ww.jk​p.com​/uk/l​ucy-s​ -stor​y-2.h​tm). In Blackman’s case, facilitated communication enabled her to learn to type and communicate independently of her carers (although with much more substantial assistance from them early in the process), to the point where university ethics boards were content that her writing and class contributions were her own work, conveyed via typed communication. However, several studies on the reliability of FC have indicated that this form of communication is guided not by the autistic individual but by the facilitator (Bligh and Kupperman 1993: 553–7;

116

Discourses of Care

Hudson et al. 1993: 165–73; Shane and Kearns 1994: 48–54). Laura Schreibman described it as a ‘bogus treatment’ (2005: 203) that is deeply harmful in raising people’s hopes for articulation in severely non-communicative autistic people, and she pillories those professionals who, like Douglas Biklen and Tony Atwood, support it as a therapy or communication method. However, as Stuart Murray points out in Representing Autism (2008: 20), Schreibman’s argument, while meticulously laid out, does not include the opinions of any autistic individuals – either those who, like Blackman, have used FC, and now communicate without support from other people (although still using technological communication aids), or others whose grasp of language developed late and in unpredictable jumps (such as Temple Grandin or Naoki Higashida). However Blackman composed her autobiography; it is therefore problematic to assume that, because she references a controversial technique, her narrative is not genuine, and to frame it as the product of – at best – wishful thinking from carers and guardians, and at worst, as bad care. The reader is left with two choices: either to accept Blackman’s narrative or to view it with suspicion as part of the body of faux autobiographies that prompt public distrust of the form (e.g. the public furore over the revelation that James Frey had invented and exaggerated sections of his ‘autobiography’, A Million Little Pieces (2003)). Yet, however Blackman composed her autobiography, it is problematic to assume that, because she references a controversial technique, her narrative is not genuine – and even if Lucy’s Story was, like A Million Little Pieces, discovered to be more fictional than its original marketing pitch implies, the text would still have relevance to a discussion of autobiography, and to representations of autism. That the latter position also runs along potentially ableist assumptions about neurodiverse authorship and historical deprioritizing of disabled people’s voices renders any such judgement significantly more complicated. It is with this attentiveness to the dangers of authorial dependency that I introduce Lucy’s Story. Blackman, who is non-verbal, relies primarily on a typing to communicate. In Lucy’s Story, Blackman narrates a childhood where she was slow to adjust to an incomprehensible environment, and her comprehension of language outstripped her competency in using it. The chapters covering Blackman’s pre-communicative years are all pre-titled ‘Little Lucy’, a repetitive and restrictive naming choice that presents a deliberate contrast with the more varied titles of the chapters detailing her life after acquiring access to written communication.3 Each of the ‘Little Lucy’ chapters also contains a subconclusion detailing Blackman’s gradual conception of self: in ‘Little Lucy:

Controversies of Care

117

Taste, Touch and Tantrums’, Blackman relates her synaesthetic enjoyment of sound – enjoying the ‘vibration of the tissue behind my mouth, but not really understanding that other part of the sensation, that which we call “sound”’ (1999: 19). Such a statement is important in several ways. First, it introduced synaesthesia as a theme and a neurodiverse method of sensuous interaction to which Blackman returns throughout the text (including the tactile act of typing to communicate). Secondly, in using the word ‘we’, Blackman includes herself and her readers in a collective claim to language and communication that is vital to her autobiographical account, asserting her right to social participation irrespective of her command of unmediated communication. Finally, in the conclusion to the described episode, where Blackman recounts how, courtesy of her sisters’ habit of shouting and throwing things at her until she stopped ‘coo[ing] and wail[ing]’ (ibid.), she ‘started to learn that my name, which I recognised as the word that people tossed in my direction, was also a person, and that person was me – Lucy’ (ibid. 20). Blackman’s non-verbal status is the probable reason for the ‘editor’s note’ featured in the initial pages of the book, which attempts to assert the uniqueness of Blackman’s authorial voice while explicitly declaring her authorship: ‘[T]he text of this book was created by Lucy Blackman during several years of writing and re-writing. The original manuscript was slightly shortened and some punctuation added by Mary Jane Blackman under Lucy’s direction, before Jennifer Beale undertook pre-publication editing which mainly involved further revision of punctuation’ (ibid., vi). What is remarkable about this note is not that Blackman composed her own manuscript, but that Blackman’s publishers (Jessica Kingsley) felt it necessary to authenticate her authorship. It would be astounding if any book accepted for publication did not undergo some editing of punctuation and removal of sections of text – hence the employment of editors. It is understandable that the publishers may be wary of charges of facilitated communication – a practice which has often, as G. Tom Couser outlines in Vulnerable Subjects: Ethics and Life Writing (2004: 52–3) and as Blackman refers to in her autiebiography, led to allegations of misrepresentation, and even abuse (Schreibman 2005: 212). Transcription is a concern in facilitated narratives of any kind – whether through FC, as Blackman uses, translation or oral history. Alessandro Portelli posits that the insertion of punctuation and form necessitates an act of ‘interpretation’ (2006: 33), in attempting to convey the rhythm, tone and pace of speech. Yet Portelli argues that this does not render oral sources unreliable – rather, they are invested with a ‘different credibility’ (2006: 37).

118

Discourses of Care

‘Nevertheless, the risk of the publisher’s statement (however well-intentioned) is to undermine Blackman’s authority. Blackman’s dependency on FC renders Lucy’s Story a complicated publication: without technological assistance and the role of her family carers, Blackman’s autobiography could never have been written, or indeed communicated. G. Thomas Couser, deconstructing the jointly authored autobiography Black Elk Speaks: Being the Life Story of a Holy Man of the Oglala Sioux, as told through John G. Neihardt (Flaming Rainbow) (1932), was faced with a similar issue: Black Elk Speaks is a narrative of the life of a Sioux elder, where every word is mediated and translated by John Neihardt, an American from Missouri with an interest in tribal history and culture. There are obvious questions to be asked about the distance between the oral and written narratives of Black Elk’s life; but Couser concluded his analysis by arguing that ‘far from being an anomaly […] Black Elk Speaks may represent the general condition of autobiography, which always seeks – but always fails – to recapture “aboriginal” experience, and whose ontological status is perhaps less important than the question of how it was produced or constructed’ (2004: 254). Following Couser’s logic, I agree that there is little point in criticizing the joint authorship of Lucy’s Story: yet it would be a mistake to cease analysing the nature and effect of this added input simply because the alternative to FC would be no narrative at all – Lucy’s Story still contributes to narratives of care and autistic experience and perception.4 While FC complicates the authorship of Lucy’s Story, it has also prompted atypical stylistic choices in the formatting and structure of the text, ones which explicitly engage with questions of authenticity and individual style and voice. Blackman chooses to relate some aspects of her autiebiography in poetry and transcript form, as well as in standard prose. These varied formats are accompanied by Blackman’s narratorial commentary, critiquing both her perspective at the time of the remembered incidents, and how she went about expressing herself (whether by gesture, typing, noise or FC). Far from producing a text where the translator figures predominate, this enables the reader to encounter two simultaneous sources of input from Blackman. For example, in her interview with Tony Attwood, Blackwood’s explanatory comment, ‘I tried to explain that I could not speak, rather than not having language’ (1999: 181) prefaces her original typed communication: ‘BEING UNABLE TO SAY SOMETHING, ACTUALLY IS THE SAME AS NOT BEING ABLE TO MOVE IN RESPONSE TO AN INSTRUCTION!’ (ibid.). This presents two different authorial voices,

Controversies of Care

119

both attributed to Blackman, and both forms of Blackman’s authorial voice present a clear contrast to the other people whose dialogue is recorded in the extract (Jay Blackman and Tony Attwood) – a typographical, paratextual distinction made possible by Blackman’s choice to type her communication. Furthermore, Blackman begins her text by introducing the reader (via another recorded transcript) to her family who assisted her through FC in the writing of Lucy’s Story, and so could be considered carers and co-authors. Blackman recounts how, in the process of compiling her narrative, she ‘started with [her] four big sisters’ (ibid., 3), inviting mother and siblings to her house (after ‘press-gang[ing]’ (ibid.) her eldest sister into organizing the gathering). Having established that ‘the family conclave was back in session’ (ibid.), Blackman proceeded to corroborate her recollections by recording her family’s memories of her as a child and young adult, as her ‘typewritten draft passed from hand to hand’ (ibid.). Edited transcripts from this recorded material make their way into the text in subsequent chapters – inserted verbatim, if with some cuts, and with (Lucy) Blackman’s input (typed, with an assistive hand, then read aloud for the benefit of the tape recording). So, as chapter one, ‘Little Lucy: Taste, Touch and Tantrums’ begins with the statement, ‘I was queer and difficult as a very small baby’ (ibid., 4), the reader is introduced to Lucy, the youngest of five daughters, who together formed ‘a very cohesive group’ and were supported by a ‘strong’ and loving (if far-flung) extended family (ibid., 3–4). This chronological and family-based introduction to an autobiography is, at least initially, perfectly conventional. It is also interrupted within the first three pages, when Blackman interrupts the prose with the following insertion, separated from the main body of the text by indentations, italics and full justification of the text (in a manner similar to Georges Perec’s autofiction W or the Memory of Childhood (1975)): The family read the original draft of that passage, and started to look bored. Kim released the pause button on the tape recorder. I was the first person to say anything, though on the recording it is Jay’s voice that speaks my words one by one, with the sound of a tiny grating click begin my voice: DO // YOU // FEEL // THAT // I // CAN // MAKE // SLIGHTLY // HUMOROUS // REFERENCES // TO // US // AS // A // FAMILY? // DID // WE // DO // THINGS // VERY // ODDLY // BECAUSE // OF // ME? JENNY: Do you want us to tell stories? – (giggling) why not, it was a bit strange! KIM (slightly pompous with embarrassment): Lucy remembers she was often in demand as a hot-water bottle. Of course as the youngest and cutest, she was

120

Discourses of Care

probably the most popular choice as a real-life doll. (Perhaps we should have hidden the tape recorder, because she sounded like someone reading a statement.) JAY: You weren’t much bigger than she was, Jenny. What happened if you tried to hold her wrist? JENNY: She would just wriggle free, except when we were playing games. I can remember as a young kid being taught a game in which two people do a rocking boat action, sitting on the floor opposite each other. […] Lucy was the only one who would do it with me because I liked playing it for hours and hours on end. You see, I also liked the sensation! (I notice that she still lisps!) Tape recording of family meeting, June 1993. (ibid., 6–7)

The choice to interrupt the narration with a second narratorial voice – also Blackman’s – and to render it visually different from both the general text and her typed contributions recorded in the transcript is both formally interesting and potentially confusing. One the one hand, the presence of multiple narrators, and Lucy Blackman’s authorial commentary on her own writing makes for some difficulty in ascertaining who is speaking at any one time in Lucy’s Story. On the other, Blackman’s decision to format her text in this way enables her to explicitly engage with questions of authorship and care and highlights her use of the typed word as a primary method of communication. For example, the use of italics to delineate Lucy Blackman’s authorial commentary from the transcript of the tape recording provides a clear visual divide between her authorial voice and that of the other characters, and it sets up all other contributors to the text as just that – secondary characters, who are part of a large and caring family, rather than the focus of the narrative. Blackman’s comments that Kim was ‘slightly pompous with embarrassment’ (ibid., 6), and that Jenny giggled and lisped read like extracts from a theatrical script, with actors’ notes in italics beside the dialogue. This has both the practical side effect of making the narrative more easily comprehensible for the reader, and paratextually prioritizing Blackman’s position within the text, despite her use of FC. It also presents Lucy’s Story as a text that deliberately engages with plurality of authorship and technology: what Michael M. J. Fischer describes as the ‘mosaic composition’ of autobiography (1994: 79). There are other consequences to this atypical paratext: the use of capital letters makes it difficult to read Blackman’s words fluidly, as there is a constant awareness of a different register. This is potentially quite representative of Blackman’s relationship with communication as something to be worked at, as well as serving the same practical purpose as the italics in easily

Controversies of Care

121

distinguishing Blackman’s narrative from her speaking voice, and those of the other individuals (primarily her family). This is a process of joint, familial authorship that makes every attempt to maintain (Lucy) Blackman’s authority, and focuses on caring and family relationships over diagnosis. With a narrative shared so widely, Blackman’s main text contrasts with the obsession with reliable authorship demonstrated both in the editorial note inserted by Jessica Kingsley Publishers and patterns found elsewhere within autiebiographies (e.g. Grandin’s Emergence). It is a method of composition based in discussion, and as such, contrasts all the more markedly both with the editor’s note and with the foreword to Lucy’s Story.5

Neurotypical attitudes to technology and facilitated communication Introducing Lucy’s Story is ‘Tony Attwood, Ph.D’ (in psychology), who begins by delineating for the reader what he considers makes Blackman’s text worth reading (1999: vii). No mention is made of the formally distinctive elements of the book: the fragmentary style of Blackman’s prose, her poetic extracts or her preference for abstract language. Instead, Attwood concentrates on the fact that Lucy’s Story can claim to be a unique autobiography because ‘Lucy provides the point of view of someone with autism who has never used speech’ (ibid.). There is an implication, in the conditional nature of this statement, that if Blackman’s narrative was simply one of the ‘many autobiographies written by people with autism’ (ibid.) then it would not be worthy of note – and indeed, it is the unique selling point of Lucy’s Story. Attwood explicitly asks, ‘What can the reader learn from [Lucy’s] autobiography?’ (ibid.) His answer to his rhetorical question is as follows: ‘Parents of children with autism will acquire a greater understanding of the child and the challenges they face. […] Professionals who specialise in autism will be interested in how her descriptions are consistent with our theoretical models and the research literature. […] Professionals and lay people alike will recognise a story of strength in adversity’ (ibid.). It is entirely likely that neurotypical people who work or live alongside autistic individuals would find Lucy’s Story interesting and useful. But it is telling that Attwood does not mention the possibility that another autistic person might read Blackman’s account, and find it personally or stylistically engaging. Whereas Temple Grandin’s Emergence was the first English-language

122

Discourses of Care

autiebiography, Blackman’s text, published over a decade later, was part of a small but growing body of autistic life writing – a field large enough that it is the fact that Blackman is non-verbal, rather than autistic, that is held up as the distinctive trait of Lucy’s Story. Attwood’s afterword, in particular, resembles a case study summary more than the conclusion to a literary text. Following Attwood’s rhetoric of ‘use’, if a reader comes to this text it is because of Blackman’s autism, and more specifically her experiences in the facilitative communication programme. If that were not the case, then Blackman would presumably be, to use Lorraine Adam’s term, a ‘nobody’ (washingtonmonthly. com) – of no interest to anyone. Yet such a judgement, in concentrating on the medically unusual, misses other aspects of Lucy’s Story. Blackman specifically grounds her narrative in questions of writing, language and narrative, rather than ‘strength in adversity’ (1999: vii). She begins her autiebiography by stating that ‘I came to language late – about twelve years too late’, but that despite this late development she was ‘enrolled in a literary studies course at University’ (ibid., 1) five years after acquiring language (through FC). Blackman goes on to state that while at University, ‘I wrote a story in which I showed how personal experience could enrich fiction, even when all the characters and settings were imaginary. The central character was a small child much like my memories of my silent self. […] This book is my account of how that story came to be written’ (ibid.). This statement is an unusual introduction to an autobiography – positing to concentrate more on an analysis of writing than of a life. It also serves to foreground the process of composition and communication over any potential ‘use’ of the narrative. It is even more atypical when Blackman goes on to insert a series of extracts from the aforementioned short story: Nappies on a hoist whirled against the blue sky, carrying hopes and flashes of fear and delight. The lines were parallel yet circular streaks and angles cut the space that cried to the eye as a void that was also a containment. Round and round and round again. […] The water hurtled from the tap to hit the white enamel. Screaming, the struggling child passed from anguish to blind terror. The towel loomed, and the rough threads stood out in series shattering ranks. […] The horns before her held no fears. But below, the eyes, large and insistent, demanding she meet them if only for a moment. There was no escape but stillness. So she sat, soles of her feet pressed together and head turned sideways to shut out the vision she could not flee.

Controversies of Care

123

The policeman handed the small damp figure to her mother. […] The screams started to rotate as threshing arms and legs fought for freedom. […] Over her head and through the fury of her restraint, the little girl heard the voice, ‘Well, that’s autism for you.’ (ibid., 1–2)

In beginning with an explicitly fictional piece of writing – but one that initially presents itself as autobiographical – Blackman undermines two prevailing concepts in autiebiography: first, the tradition within Western autobiography that life writing must concentrate on truthful narrative, rather than, as she does, informing the reader that ‘the little girl in that tale was an invention, though the way that she saw the world was mine’ (ibid., 2). Secondly, Blackman combats that idea that autistic individuals are incapable of imaginative thought or play: what else is fiction but the product of imagination? By the beginning of the first chapter, the reader is left in no doubt of Blackman’s creative ability or autonomy of thought, despite her reliance on assistive technology. There is also an interrogation of the creative process, when the reader is introduced to each and every one of Blackman’s facilitators and carers – or potential ghost writers – each with distinct characteristics. There is Rosemary Crossey, the woman who first attempted (and invented) FC; Jay, Blackman’s mother; Hayley, Val and Jenny, Blackman’s older sisters; Mrs Church, Mrs Wong and Mrs Lohning, some of her teachers; Jaime, Pauline and Petra, Blackman’s personal classroom assistants. These individuals assisted and facilitated Blackman’s writing, cared for her at various points in her life and became characters in her story. Yet, as characters within the autiebiography they are (at least in terms of their representation) controlled by Blackman. The short story also serves a secondary purpose: delineating the gap between Blackman’s and the reader’s respective understanding of language. Some of these differences in the use of language may be attributed to the geographical context – for example, a reader from the United Kingdom or the United States may expect to fill imaginary spaces with flora or fauna from their homeland rather than Australia – but there is still a sense of dislocation when, for example, Lucy refers to the ‘cow’ (ibid., 9) story, which, up till that point, the reader may have interpreted as the sheep, deer or goat story (or any other miscellaneous ‘horned’ (ibid., 2) animal). Similarly, the fictional girl’s fear of bathwater delineates Blackman’s distinction between what she supposes to be a neurotypical fear of water – the sound of water splashing on enamel, which she imagines that neurotypical people find alarming – and her

124

Discourses of Care

own personal dislike of running taps, because of her fear of water appearing from nowhere (ibid., 2, 7). These are small differences, but they are enough to emphasize a different set of linguistic connections and force the reader’s understanding of autism into the context of the minutiae of the story, rather than in sweeping generalities or the terminology of medical diagnosis or FC – however significant the latter is in terms of the development of Lucy’s Story. It is probable that without FC, Lucy’s Story would not exist, which is one justification for Tony Attwood’s focus on it in his introduction to the text. However, Blackman (or her publisher’s) choice of Attwood as the author of the foreword and afterword is particularly curious in consideration of his interest in Blackman’s experience of FC. Attwood was visiting Australia to investigate the apparent success of Rosemary Crossley’s FC programme, and met with Blackman, as one of the students who had been helped by Crossley’s method. Perhaps this is why Attwood’s afterword essentially presents Lucy’s Story as a case study evidencing a specific demonstration of autism and facilitative communication. He divides his final comments into categories – ‘communication skills’, ‘social reasoning’, ‘behaviour’, ‘cognitive skills’, ‘sensory processing’, ‘movement skills’ and ‘any other factors’ (Attwood in Blackman, 1999, 283–8) – and then provides very specific updates regarding Blackman’s development in each area, under the overall question, ‘What can we learn about autism from Lucy’s autobiography?’ (ibid., 283–8). Much of the information he includes under these headings stem from his interview with Blackman. Yet Blackman’s own version of their transcript offers a rather different picture of the event. Blackman presents the interview dialogue in an ironic, amusing fashion: two people attempting to teach and learn, consistently talking or typing at crosspurposes, with a language gap just wide enough to impede understanding. But there is more on display in this extract than a communication difficulty between an autistic individual and a neurotypical person. There is a clash between Blackman’s language of experience and ordinary life, and the practicalities of her mode and speed of communication, and that of a representative of a medical study with an agenda. Blackman describes Attwood as a ‘betterthan-average listener’ (1999, 180), who nevertheless loses the thread of the conversation. This is a literal description – Blackman recounts Atwood stopping mid-conversation to gather up and reread the printed tape featuring Blackman’s typed contributions, stretching it ‘out [on] his hands to read,

Controversies of Care

125

as though winding skeined wool’ (ibid., 181)). Each time this happens, it is because Attwood has heard something in Blackman’s question that could be connected to a prevailing theory on how autism is understood. Thus, in the first section of the interview, Attwood treats intelligence or comprehension as a synonym for verbal communication skills (despite Blackman’s evident reliance on the typed word): ‘HAVE YOU SEEN SOME WEIRD PEOPLE ACTUALLY TYPE? […] TELL ME IF YOU SEE US AS INTELLIGENT?’ Tony went into a long spiel on autism, and how professional people used conversation and other tests as a guide to someone’s intelligence, and ended up, ‘It may be that some people with autism have a problem with communication, not that they are not intelligent. Did that answer your question?’ ‘NO.’ I tried to explain that I could not speak, rather than not having any language. ‘BEING UNABLE TO SAY SOMETHING, ACTUALLY IS THE SAME AS NOT BEING ABLE TO MOVE IN RESPONSE TO AN INSTRUCTION!’ At this point, Tony lost track. (ibid., 181)

This section of Lucy’s Story is of primary importance in outlining Blackman’s perspective on the relationship between language and the body, and of speaking/ writing as embodied actions. Her statement about communication (vs. obedience) also speaks to Kötting and Holdsworth’s descriptions of embodied communication in the final chapters in this collection. When, following another line of discussion, Blackman asked about autistic social analysis, Attwood interpreted this as a question about personal social interaction: ‘HAVE LESS SEVERELY DISABLED PEOPLE TOLD OF FEELINGS THEY SEE IN OTHERS?’ I was talking about watching other people socialise among themselves, not others talking directly to me. When I was approached by someone, I often have some confusion because not all parts of their face were consistently in the same perspective. […] However I could be in the presence of people who were not interacting with me, and observe them as if I were the researcher. […] ‘Some of the able people with autism who can speak have said, “People give messages with their eyes, and I don’t understand them,”’ he said. I tried to explain the difference, but I was stymied […] ‘Sometimes I get the impression that for some people with autism, there are certain feelings that they find very difficult. Do you find it difficult to express embarrassment?’ asked Tony.

126

Discourses of Care

By this time I had realised that we were talking about two different things. (ibid., 181–2)

In the end, Blackman ‘gave up’ (ibid., 182), and simply agreed with Attwood’s interpretations. Such a conclusion is dispiriting, but it is an interesting inclusion within the text: a clear indication that for all Attwood’s attempts to neatly encapsulate Blackman’s experience of autism in the foreword and afterword, his professional opinion, when expressed in literature, is exactly as fallible as in spoken discourse. This is not a criticism of Attwood – Blackman’s unpunctuated text is not easy to understand, and it is natural to interpret in the light of one’s own convictions and experience – but Blackman’s inclusion of the interview transcript, with her own reflections on their misunderstandings, ensures that Attwood’s commentary cannot be viewed as purely factual or accurate. As such, there is no deification of medical authority, only the opinion of a medically educated man. Viewed through the lens of oral history theory – traditionally viewed as ‘giving a voice to the voiceless’ (Abrams 2010: 26) – Blackman’s treatment of the Attwood interview becomes an even more significant claim to authorship and independence via assistive technology and support. Lynn Abrams, writing about the differences between oral history and autobiography, states that the ‘critical aspect that distinguishes an oral history interview – even one that takes a life-story approach – from autobiography is the involvement of the interviewer’ (ibid., 26–7) – someone who selects a subject for interview, directs the discussion via questions and is responsible for transcribing the ensuing conversation (and deciding whether or not to publish it). Yet Lucy’s Story – clearly marketed as an autobiography – includes interview transcripts, selected and controlled by Blackman and her editors, not Attwood. Alessandro Portelli argues that ‘although an oral autobiographical narrative may look … very much like any other autobiographical text, it constitutes a very different autobiographical act […] because the basis of authority is different’ (2004: 28). Portelli’s argument is convincing – being granted an opportunity to speak, via an intermediary, is fundamentally different from simply choosing to speak – but problematic when applied to Lucy’s Story. Blackman, the ‘disabled’ and ‘marginalised […] outsider’ (Walmsley 2006: 185), as the interviewer and Attwood as the interviewee inverts the conventional order. Blackman’s choice to include interview transcripts, and her responses to them, illustrates the problems inherent in

Controversies of Care

127

communication – neurotypical and otherwise – and is a challenge both to the convention of medicalized prefaces in autiebiographies and to the long tradition of the mediation of disabled discourse. Instead, Blackman offers an alternative model of communication: one rooted in technology, but also in the relationship of trust between herself and her carers, providing the counterpart narrative to Andrew Kötting’s references to care, in this collection, as the hand ‘pulling at one’s sleeve’. Lucy’s Story initially began with a hand on the arm, and support in communicating; it developed via typewriters, computers and other assistive technology. Embodied communication, as outlined by Blackman, involves reliance on technological assistance but also on interdependent relationships with other people, and mutual trust and care – not the dominance of one person over another. Blackman’s sequel to Lucy’s Story, Carrying Autism Feeling Language, was published on in 2013 via SmashWords (www.smashwords.com) and continues to outline her philosophy of embodied communication. This second publication – a collection of autobiographical essays – includes a short essay on the topic of hands, care and communication, and makes an effective final illustration of Blackman’s thesis on language and communication: It is 2013. As I type this page I am using one finger, the right forefinger. I am looking at my hand and my mother sits on my left. Sometimes she puts her arm around my shoulders. This way my body can register where I am in space while I focus so that my hand and finger are completely part of my movementdriven language. If she does this today it will be because I have started describing subjective experiences and the stress of that makes me giddy. When I am particularly distraught she may lean her leg against my knee. However now often I type with no physical contact. As a rule that only happens when things are very quiet and I am comfortable with what I want to say. I may also use free-hand typing when I have to show someone else how my hand is moving of its own volition. This kind of demonstration is also a good way of asking someone to look at the additional roles of the communication partner over and above physical support. I will get to that a few thousand laboriously typed words further on. But in 1987, when the teenager that I then was, first used coherent language, I needed the most familiar helping link in the life of any child. I did so hand-inhand with someone else. A few months later I moved on to having the other person touch me on the forearm, but the impact was pretty much the same as being supported on the hand or wrist.

128

Discourses of Care

[…] I had always fought being led by the hand, but here I was leading the person supporting me. I was in control of the movement. (2013: 31)

Notes 1 For more information about supported decision-making and communication, and independent advocacy, see the work of People First (https://peoplefirstscotland.org/) or the Scottish Independent Advocacy Alliance (http​s://w​ww.si​aa.or​g.uk/​us/in​depen​ dent-​advoc​acy/)​(accessed 28 August 2019). 2 I use ‘autiebiography’ to refer to autistic autobiography and life writing throughout. For further discussion of the term autiebiography, see Couser (2004: 5). 3 Throughout this discussion, all atypical spelling, formatting, punctuation and grammar quoted from Lucy’s Story is present in the original text. 4 For further discussion of the ethical complications of Neihardt’s role in Black Elk Speaks, see Couser (2004: 97), Sweet Wong (2005: 135–6) and DeMallie (1984: 32). 5 This joint authorship bears comparison with the traditions of group-led oral history as a gendered (female) activity – see Abrams (2010: 118–19).

References Abrams, L. (2010), Oral History Theory, Abingdon: Routledge. alex (username) (2018), ‘About wrong planet’, Wrong Planet. Available online: wrongplanet.net/about-wrong-planet/ (accessed 28 August 2018). Asperger, H. (1944, trans. 1991), ‘Autistic psychopathy in childhood’. In U. Frith (ed. and trans.), Autism and Asperger Syndrome, 37–92, Cambridge: Cambridge University Press. Bérubé, M. (2010), ‘Equality, freedom, and/or justice for all: A response to Martha Nussbaum’, in E. Feder Kittay and L. Carlson (eds), Cognitive Disability and Its Challenge to Moral Philosophy, 97–109, Wiley-Blackwell. Bettelheim, B. (1972), The Empty Fortress: Infantile Autism and the Birth of the Self, New York: The Free Press. Blackman, L. (1999), Lucy’s Story: Autism and Other Adventures, London: Jessica Kingsley. Blackman, L. (2013), Carrying Autism, Feeling Language: Beyond Lucy’s Story, Brisbane: Book in Hand, Smashwords. Available at https​://ww​w.sma​shwor​ds.co​m/boo​ks/vi​ ew/31​4657 (accessed 28 August 2019).

Controversies of Care

129

Bligh, S. and P. Kupperman (1993), ‘Evaluative procedure for determining the source of the communication in facilitated communication accepted in a court case’, in Journal of Autism and Developmental Disorders, 23: 553–7. Couser, G. T. (2004), Vulnerable Subjects: Ethics and Life Writing, Ithaca: Cornell University Press. DeMallie, R. J. (1984), ‘Introduction’, in R. J. DeMallie (ed), The Sixth Grandfather: Black Elk’s Teachings Given to John G. Neihardt, 1–74, Lincoln: University of Nebraska Press. Digital Health and Care Scotland, ‘Technology Enabled Care’ (2016). Available online: https​://ww​w.dig​iheal​thcar​e.sco​t/hom​e/res​ource​s/tec​hnolo​gy-en​abled​-care​-tec/​ (accessed 28 August 2019). Fischer, M. M. J. (1994), ‘Autobiographical voices (1, 2, 3) and mosaic memory: Experimental sondages in the (post)modern world’, in Kathleen Ashley et al. (ed), Autobiography and Postmodernism, 79–129, Amherst: University of Massachusetts Press. Frey, J. (2003), A Million Little Pieces, London: John Murray. Grandin, T. and M. M. Scariano (1986), Emergence: Labeled Autistic, Novato: Arena Press. Grinker, R. R. (2009), Isabella’s World: Autism and the Making of a Modern Epidemic, London: Icon. Happé, F. and P. Vital (2010), ‘What aspects of autism predispose to talent?’ in F. Happé (ed), Autism and Talent, 29–40, Oxford: Oxford University Press. Higashida, Naoki (2013), The Reason I Jump. Trans. K. A. Yoshida and David Mitchell, London: Sceptre. Holmer Nadesan, M. (2008), ‘Constructing autism’, in M. Osteen (ed), Autism and Representation, 78–96, London: Routledge. Hudson, A., et al. (1993), ‘Assessing the validity of facilitated communication: A case study’, Journal of Autism and Developmental Disorders, 23: 165–73. Jackson, L. (2002), Freaks, Geeks and Asperger Syndrome: A User’s Guide to Adolescence, London: Jessica Kingsley. Jessica Kingsley Publishers, ‘Lucy’s story’. Available online: https​://ww​w.jkp​.com/​uk/lu​ cy-s-​story​-2.ht​m (accessed 28 August 2019). Kanner, L. (1943), ‘Autistic disturbances of affective contact’, Nervous Child, 2: 217–50. Levinson, B., dir. (1988), Rain Man, MGM Studios. Kearns Miller, J. et al., eds (2003), Women from Another Planet? Our Lives in the Universe of Autism, Dancing Minds Books, Bloomington, IN: 1stBooks. Miller, J. S. et al. (2013), ‘Autism spectrum disorder reclassified: A second look at the 1980s Utah/UCLA autism epidemiologic study’, Journal of Autism and Developmental Disorders, 43 (1): 200–10. Murray, S. (2008), Representing Autism: Culture, Narrative, Fascination, Liverpool: Liverpool University Press.

130

Discourses of Care

Neihardt, J. (1932), Black Elk Speaks, New York: University of New York Press. Nussbaum, M. (2006), Frontiers of Justice: Disability, Nationality, Species Membership, Belknap Press, 2006. Perec, G. (1975), W ou le souvenir d’enfance, Paris: Edutions Denoël. Portelli, A. (2004), ‘Oral history as genre’, in M. Chamberlain and P. Thompson (eds), Narrative and Genre: Contexts and Types of Communication, 23–45, Abingdon: Routledge. Portelli, A. (2006), ‘What makes oral history different’, in R. Perks and A. Thomson (eds), The Oral History Reader, 2nd edn, 32–42, Abingdon: Routledge. Schreibman, L. (2005), The Science and Fiction of Autism, Cambridge, MA: Harvard University Press. Scottish Government (December 2016), Health and Social Care Delivery Plan. Available online: https​://ww​w.gov​.scot​/publ​icati​ons/h​ealth​-soci​al-ca​re-de​liver​y-pla​n/#re​s5119​ 50 (accessed 28 August 2019). Scottish Government (May 2018), Technology Aided Care: Date Review and Evaluation Options Study. Summary Report. Available online: https​://ww​w.gov​.scot​/publ​icati​ ons/t​echno​logy-​enabl​ed-ca​re-pr​ogram​me-da​ta-re​view-​evalu​ation​-opti​ons-s​tudy-​ summa​ry/ (accessed 28 August 2019). Shane, H. C. and K. Kearns (1994), ‘An examination of the role of the facilitator in facilitated communication’, American Journal of Speech and Language Pathology, 50 (3): 48–54. Sweet Wong, H. D. (2005), ‘Native American life writing’, in J. Porter and K. M. Roemer, The Cambridge Companion to Native American Literature, 125–44, Cambridge: Cambridge University Press. Walmsley, J. (2006), ‘Life history interviews with people with learning disabilities’, in R. Perks and A. Thomson (ed), The Oral History Reader, 2nd edn, 184–97, Abingdon: Routledge. Wing, L. and J. Gould (1979), ‘Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification’, Journal of Autism and Developmental Disorders, 9: 11–29.

Section Three

Education, media and care

132 

7

Performances of care Film, re-education and shell shock Robert Hemmings

This chapter interrogates the role of the new medium of film in the practices of care that were undertaken by Arthur Hurst at war hospitals in Netley and Seale Hayne in the last years of the First World War. It situates Hurst’s film, War Neuroses (1918), in the context of both contemporary military treatments of shell shock and contemporary popular film techniques and tropes. Likely inspired by French army physicians’ extensive use of film in their treatment of neurological cases, the British Medical Research Committee agreed to support the collection of ‘kinematographic records of selected cases of nervous injury [for] the purposes of teaching and study’ in the British Army (Jones 2012: 352–3). Hurst’s film is the first and only surviving film from this proposed collection, though military historians surmise that motion pictures from other hospitals may have been lost (Jones 2012: 353). War Neuroses features a series of twenty case studies of patients suffering from a range of intractable movement disorders, followed by a curious faux battle scene. Its purported purpose was to visually supplement Hurst’s clinical lectures, and indeed it did provide a way of showing clinical cases without requiring patients to present themselves at the lecture theatre. But the film became much more than a supplement to clinical lectures – it became integral to the successful treatments it purported to record. As such, the film is a fascinating embodiment of the performativity and spectacle of care practised under particularly trying institutional conditions. In any military hospital during wartime, patients were soldiers, and, as such, the underlying goal of treatment was to return them to active duty. With Hurst’s patients, as with most soldiers afflicted with war neuroses, this proved a nearly impossible task. This relative therapeutic futility, however, neither undermined

134

Discourses of Care

Hurst’s conviction in his methods nor featured in the narrative of his film. Nevertheless, the film is shaped as much by its institutional context as by the mercurial inclinations of its chief physician-cum-auteur, Arthur Hurst. While Hurst sought to anchor his approach to war neuroses in the discursive field of wartime medical education, and even published a book and numerous articles during the war on the subject, and situated his treatment protocols under the umbrella of ‘re-education’, the performative conventions of the new medium of film at times undermine its ostensibly pedagogical drive, revealing the film to be a complex and ambiguous cultural text. This ambiguity is especially striking from the vantage point of the twenty-first century. Tiffany Watt Smith finds War Neuroses ‘part medical documentary, part propaganda, part exercise in self-aggrandizement’ (2014: 168). She describes the experience of viewing this film in the archive of the Wellcome Trust on her own, as profoundly discomforting and ‘cringe’ inducing in its exploitation of vulnerable bodies to create its effects (2014: 169). Despite her unease, Watt Smith’s reading is useful in situating Hurst in the context of contemporary film-making practices and foregrounding some of the cinematic tropes featured in Hurst’s hybrid film text. As Watt Smith astutely points out, theatricality characterized not only the film War Neuroses but Hurst’s entire clinical environment at Netley and Seale Hayne. Despite his noteworthy resistance towards the benefits of psychology as a suitable treatment modality for war neuroses (as discussed later in this chapter), Hurst’s attention to the therapeutic function of environment connects him to the larger circle of military-medical practitioners who also recruited environment into their various understandings of ‘re-education’, including such diverse figures as W. H. R. Rivers, Arthur Brock and Lewis Yealland. In this chapter, I address the elements of performance that characterized not only War Neuroses but Hurst’s approach to re-education and the entire clinical environment at Netley and Seale Hayne, and conclude by adapting an Ariella Azoulay theory of the ethical limitations of photographic images in order to explore what is so compelling about Hurst’s film: not the therapeutic efficacy of the practises of care it ‘records’, or dramatizes, but rather the assumptions about care and well-being it exposes. At Netley and Seale Hayne hospitals, Hurst developed models of care and re-education that he claimed could successfully treat the most recalcitrant of shell-shocked patients. He used film as a means to at once record and reinforce the performances of care he delivered at these hospitals during the last years of the war, but War Neuroses recorded more than

Performances of Care

135

that. It also forms a record of Hurst’s indebtedness to the conventions of the new medium he recruited into his professional advancement and registers the limitations of institutions of care.

War Neuroses and its makers The etymology of ‘care’ in English is particularly relevant to Hurst’s film. Care is an old word, entering Old English with Germanic origins, cara, meaning ‘trouble, grief ’ or Old Norse, ‘bed of trouble or sickness’ (OED). Its earliest meaning in English relates to ‘mental suffering, sorrow, grief, trouble’ which by an ironic inversion relates precisely to the chief actors in the film War Neuroses, enlisted men burdened by care, in this sense. Hurst’s film is an attempt to care for his patients in the twenty-first-century notion of care encompassing the medical sense most commonly associated with this anthology, with various treatments connected to ‘persuasion and re-education [and] suggestion’ (Hurst and Symns 1918: 139). From a contemporary physician’s perspective, care and treatment are intertwined but distinct. For Michael Hutcheon, a respirologist whose interdisciplinary research touches medicine, literature and culture (Hutcheons n.d.), ‘care involves all aspects of management of an individual with a specific health problem. This might reflect the best possible practice for comfort, say, whether or not it had any impact on the underlying pathology. Treatment involves measures aimed at alleviating the pathology itself ’ (Hutcheon 2016). So, we can think of care as a broader term covering overall health improvement and treatment as a particular interventional practice. And in the context of military medicine in the First World War, the goal of ‘health improvement’ is complicated by both the prerogative of returning the injured soldier to active duty and the uncertainty surrounding the underlying pathology of war neuroses. This uncertainty is underscored by the mutability of the terms deployed to identify the phenomenon: ‘war strain’, ‘neurasthenia’, ‘hysteria’, ‘anxiety neuroses’, ‘shell shock’, ‘NYDN (Not Yet Diagnosed, Nervous)’ and ‘war neuroses’. Charles Myers, a colleague of W. H. R. Rivers at Maghull (Moss Side State Institution), coined the term ‘shell shock’ early in 1915 by way of identifying the cause of the unprecedented number of nerve-related casualties early in the war. Myers came to regret his appellation, as he realized that the condition may not be caused by a high-explosive shell, nor was it attributable to a single shock. He proposed the much less catchy NYDN (Not Yet Diagnosed,

136

Discourses of Care

Nervous) as an initial diagnostic term, which the War Office accepted in 1917 (Hemmings 2008: 30–2). In the cultural imaginary, shell shock prevails. For Arthur Hurst, it was war neuroses. Filmed over eight months in 1917 and 1918, War Neuroses is a twentyseven-minute film and has become one of the most requested films in the Wellcome Library’s archives. It is, as Watt Smith asserts, ‘part exercise in selfaggrandizement’ (2014: 169) on the part of its director, Temporary Major Arthur Hurst, a general physician with an interest in neurology (Jones 2012: 346). Arthur Hertz was an outstanding medical student at Oxford and Guy’s Hospital in the years before the war, where he played a leading role in the neurological department (Watt Smith 2014: 170). With the outbreak of war against Germany, he adopted his ‘new name’, Hurst, to underscore his Englishness (his family had been for several generations based in Yorkshire) (Hurst 1918: iii). In 1915 he volunteered for the Royal Army Medical Corps and served in the Mediterranean, where he treated infectious diseases in soldiers, before a flare up of his asthma prompted his transfer back to England (Jones 2012: 348). He was charged with treating shell shock at what was called ‘the Military Lunatic Asylum’ in the Royal Victoria Military Hospital in Netley in 1917 (Watt Smith 2014: 171). Patients at Netley and elsewhere in Britain tended to suffer chronically from symptoms of shell shock, and to be highly resistant to treatment. Such patients were deemed by military authorities to be burdensome nuisances to the Army and a drain to the pension system. Therefore, any physician able to establish an effective and efficient course of treatment for this notoriously intractable condition had the potential to earn ‘considerable professional acclaim’ (Jones 2012: 349). This potential seems to have motivated Hurst, who, according to Edgar Jones, kept an eye to his position in the post-war medical hierarchy (Ibid.: 345). As the first military physician to complete a ‘kinematographic demonstration of war neuroses’ commissioned by the Medical Research Committee, Hurst was breaking ground as a British medical film-maker, let alone a military-medical film-maker. He seems to have learnt on the job, as it were, and began his filmic experiment without a script or storyboard or national precedent (Jones 2012: 352). Technical expertise came from the camera crew supplied by the Pathé Motion Picture Co. – the UK branch of Pathé Freres – who were accustomed to working with the military, as they supplied newsreel footage for the British Expeditionary Forces in France and Belgium (Ibid.: 353). War Neuroses sets out cases of twenty individual soldiers

Performances of Care

137

with intractable hysterical disorders, seeking to demonstrate the efficacy of Hurst’s unique treatment regime. The precise nature of this treatment regime is not exactly disclosed in the film. Rather, the case studies feature before and after sequences that offer proof of the success of Hurst’s approach to care. In the earliest shooting, Hurst had the crew film demonstrations of patients’ illness, partial glimpses of Hurst’s treatment, and performances of recovered mobility staged on Netley’s exterior steps and pavements (Ibid.: 353). Once Hurst had transferred his staff and patients to Seale Hayne, a site he secured by convincing the War Office to convert a newly built agricultural college to a hospital dedicated to the treatment of war neuroses (Ibid.: 350), the scope and scale of his filming expanded. He was able to demonstrate cure, or at least his cinematic approximations of cure, by filming his ‘recuperated’ patients undertaking therapeutic work in the bucolic setting of the farmland adjoining Seale Hayne, basket weaving, picking blackberries, tilling fields and shepherding cows. But for a military physician, the success of a programme of care was not measured by the mere absence of symptoms. Lewis Yealland asserted in The Lancet ‘that adequate treatment is essential, and it will make all the difference between a useless burden to the State and a useful citizen or even a useful soldier’ (Adrian and Yealland 1917: 867). The military gold standard of successful cure, the patient’s return to military duty, is alluded to in War Neuroses, but only cinematically. The final section features the hospital patients participating in a battle staged for the camera. The intertitle announces, ‘The Battle of Seale Hayne: directed, photographed and acted by convalescent war neurosis patients’ (24:33). This dramatized battle, which seems heavily inspired by the highly popular wartime film The Battle of the Somme (1916), serves as a coda to the before/ after demonstrations of therapeutic effectiveness. It includes not just patients performing the strangely familiar roles of soldiers, and soldiers going over the top at that, but features the spectacle of a long shot of the battlefield dotted with diminutive soldiers crawling through cinematic smoke. The intertitle is indicative of Hurst’s embellishing approach to veracity. Very clearly Hurst, his physician assistant, the neurologist J. L. M. Symns, and Pathé had more oversight in the creation of this dramatized battle than the patients (Jones 2012: 353–4). This extended cinematic conclusion represents a kind of double fantasy for Hurst: the fantasy of his re-educated patients returning to battle-ready preparedness as well as the fantasy of neurologist becoming auteur, a creative master of the new medium of film.

138

Discourses of Care

Hurst and atmosphere of re-education During the war, many distinguished British military physicians favoured some form of ‘re-education’. Re-education meant quite different things to different practitioners, from those favouring psychological approaches to therapeutic intervention, like W. H. R. Rivers and Arthur Brock, to those favouring a more physiological treatment protocol, like Lewis Yealland and Hurst himself. For W. H. R. Rivers, the eminent neurologist, ethnographer and psychologist, who served at Maghull and Craiglockhart War Hospitals, re-education was integral to his treatment of soldiers suffering from neurasthenia, the more refined version of war neuroses befitting of the officer class. Re-education refers to psychotherapeutic ‘measures which the physician employs’ to foster a patient’s ‘autognosis’, the process of self-knowledge initiated by the physician (Rivers 1919: 440; 437). Predicated upon Rivers’s belief that a patient’s ignorance of the underlying causes of a mental disorder contributes to its perpetuation, autognosis is the process that encourages the patient ‘to better know himself […] to understand the real state of his mind and the conditions’ that have produced its morbid state (Ibid.: 437). ‘In most cases’, Rivers writes, ‘the full therapeutic value of autognosis is brought out only through the process of re-education in which the patient is led to understand how this newly acquired knowledge of himself can be utilized’ (Ibid.: 440). For Rivers, one of the leading advocates of Freudian ideas in wartime Britain, re-education promoted the discovery and neutralization of the underlying psychical causes that led to whatever symptoms arose to interfere with a soldier’s capacity to fulfil his duties. Re-education formed part of Rivers’s mental environment of cure. His Craiglockhart colleague Arthur Brock was a general practitioner and sociologist who developed an interest in neurasthenia before the war (Webb 2006: 342). Brock saw re-education as integral to restoring officers afflicted with shell shock to ‘ordinary healthy life’ (Brock 1918: 26). Neurasthenia, in both peace time and wartime, was precipitated in Brock’s view, by the dislocation of the individual from his or her environment. Re-education involved reintegration into one’s environment and encouraged the patient to become a benevolent influence upon his peers: ‘if each patient can be induced to constitute himself a doctor to at least one of his fellows who is in worse straits than himself, so much the better’ (Ibid.: 34). The physical and psychological environment of the war hospital, and the roles the patients performed within it (as cured role models),

Performances of Care

139

were thus integral to the psychologically inflected re-education as practised at Craiglockhart. Meanwhile in London’s Queen Square, a hospital with an international reputation for neurology (Linden, Jones and Lees 2013: 1977), Lewis Yealland and others were developing different treatment protocols that also relied upon re-education. Arriving from Canada, where his work in asylums had aroused his interest in psychology, Yealland came to Queen Square to study neurology and was quickly swept into the effort to care for the overwhelming number of soldiers suffering from so-called hysterical disorders (Buzzard 1918: v). While not in principle antagonistic to psychotherapeutic methods espoused by Rivers and Brock, Yealland was impressed by the volume of cases and understood that treating the underlying cause of hysterical disorders, through psychoanalysis, for example, was simply too time consuming in the context of wartime (Adrian and Yealland 1918: 868). So instead Yealland favoured ‘those methods of treatment which aim only at relieving the functional symptoms’; the principles behind those methods were ‘(1) suggestion, (2) re-education, and (3) discipline’ (Ibid.). According to Yealland, suggestion served to instil belief in the patient that he would be cured, sometimes reinforced by faradism (the application of electric current to the body); discipline broke down the patient’s ‘unconscious resistance’ to the idea of recovery, sometimes through punitive faradism (Ibid.). Re-education involved the physician’s concerted effort to ‘bring the disordered function back to the normal by directing it until the bad habit is lost’ (Ibid.). This was not a belaboured exercise, as rapid re-education was more effective than drawn-out psychotherapeutic approaches like psychoanalysis (Ibid.: 869), and could involve persuasion, persuading the patient through logical argument that his condition was not so serious as all that (Ibid.). For Yealland, confidence trumped accuracy, even in diagnosis: ‘It is quite true that a correct (or rather a confident) diagnosis is the first step,’ Yealland and Edgar Adrian wrote in The Lancet (my emphasis; 1917: 867). A key to Yealland’s re-education was performance. It stands to reasons that the stage for this performance was carefully managed: The treatment is best carried out in a special room set apart for the purpose, where there will be nothing to distract the patient’s attention. As soon as the least sign of recovery has appeared the re-education is begun. […] The patient is never allowed any say in the matter. […] Rapidity and an authoritative manner are the chief factors in the re-educative process. (Ibid.: 870)

140

Discourses of Care

While out of step with contemporary approaches to patient care, to put it mildly, this kind of shock and awe approach to re-education led to impressive short-term successes, which enhanced Yealland’s reputation and led to the publication of a book, Hysterical Disorders of War (1918). In short, the performance of authority and confidence in the physician was paramount to Yealland’s re-education. Since the 1980s, literary-historical accounts of Yealland’s treatment modalities position him as the bogey man of military practitioners tasked with the treatment of war neuroses (Linden, Jones and Lees 2013: 1986). Elaine Showalter referred to him as ‘the worst of military psychiatrists’ on account of his ‘barbarous’ fararadic treatments (cited in Linden, Jones and Lees 2013: 1986). While Yealland did use strong electrical currents punitively, he did so relatively rarely, and not out of line with other physicians in Britain, France and Germany (2013 : 1987). His reputation as an imperious egotist proclaiming 100 per cent cure rates turns out also to be a retrospective fabrication, part of the demonizing myth of Yealland. Evidence from his extensive hospital case records indicates that he recognized the limitations of medical interventions of any kind on many of the badly afflicted soldier patients he treated (2013: 1987). In 1917, Yealland and Adrian acknowledged that the removal of the symptoms did not ensure that relapses would not recur. They further conceded that many patients with formerly intractable conditions will be unsuitable to return to the army life, let alone to active duty (Adrian and Yealland 1917: 872). He recommended only 7 per cent of his patients return to active duty (Linden, Jones and Lees 2013: 1986). Yealland’s ‘neurological deficit model and paternalistic attitude – justification by results and disregard for patient autonomy – [were] later challenged by present patient-centred approaches’ (2013: 1987). But during the war, these patientcentred approaches did not prevail. In the context of contemporary wartime treatments, then, Yealland was no evil outlier ethically speaking. All of these notions of re-education found echoes in Arthur Hurst’s practice in Netley and Seale Hayne where he found ‘a process of re-education and persuasion was sufficient to resolve [the] residual symptoms of trauma’ (Jones 2012: 351). Like Yealland, Hurst acknowledged the pressure of time and emphasized the possibility and, more audaciously, the probability of quick and effective restoration of function (Hurst and Symn 1918: 139). By the summer of 1918, once he was established at Seale Hayne, he wrote about ‘rapid cure’, stating that ‘we are disappointed if complete recovery does not happen within 24 hours of commencing treatment, even in cases which have been in other hospitals for over a year’ (Ibid.). For Hurst, ‘re-education’ required the physical intervention

Performances of Care

141

of medical practitioners that involved ‘massaging stiffened limbs and holding trembling hands still’ but mostly it required ‘encouraging the patient to relearn “proper” movements through copying’ (Watt Smith 2014: 178). This copying was integral to the performative dimensions of re-education indicated by physicians as different as Brock and Yealland. Like Brock, Hurst too urged his recovered patients to model and perform their cure for new patients in his theatrically controlled hospital environments, as I will explore in more detail below. While not exactly playing doctors to their fellow patients, as Brock would have it, Hurst’s patients had an important role to perform in sustaining the ‘proper atmosphere’ (Hurst and Symn 1918: 140) at the hospital, the atmosphere of cure. While Hurst did on occasion use the (not unusual) techniques of suggestion through isolation and faradism favoured by Yealland, he was not quite so dismissive of his patient’s perspective as Yealland was. Hurst afforded his patients ‘a say in the matter’ as supporting actors in his theatre of cure, so long as they performed their roles according to the demands of their impresario. The introduction of the new medium of film into this environment, and the camera’s demand for capturing both illness and recovery, if never exactly the precise mechanisms of re-education, only added to the atmosphere of theatricality in Hurst’s carefully orchestrated and mediated environment. Whether promoting psychological or physiological emphases, all four medical practitioners understood that the ‘re-education’ of the patient was founded upon the patient’s confidence in the authority of the physician. With his ethnographic and anthropological background, Rivers identified psychotherapeutics as the earliest form of medical practice and found profound parallels between this kind of ‘medicine on the one hand and magic and religion on the other’ (Rivers 1919: 433), and therefore between the physician and the priest. ‘Even at the present time’ in Western countries, Rivers argued, ‘the efficacy of therapeutic measures and of religious rites in connexion with disease is largely ascribed by the less educated of the community to the personality of the physician or the priest’ (Ibid.: 436). While Rivers and Brock treated officers (relatively well educated) at Craiglockhart, Hurst and Yealland treated enlisted men (relatively ‘less educated’), and both strove to inculcate among their patients a highly invested belief, or a faith in the curative powers of the physicians and their medical environments. As Rivers attested, as with ancient practices involving spiritual healing, in ‘the most modern forms of medicine […] the confidence of the patient in his physician is generally acknowledged to be the first and most important step toward therapeutic success’ (1919: 437). Both Yealland, with his

142

Discourses of Care

carefully staged coils of wire and electrical apparatuses in his treatment rooms, and Hurst with the imposition of the machinery of film into the hospitals, recruit convincing props of modernity into their persuasive performances. The purpose is the same, as Rivers saw it: to enhance ‘faith in this personality and its influence in directing the process of suggestion’ (Ibid.). Rivers connected the persuasive power of the physician’s personality to the same mechanisms as religious faith, while Hurst understood this persuasive power to reside in the will of the physician and the physical and behavioural environment he is able to construct. The novel technology of film was as integral to this environment of cure as it was to Hurst’s apprehension of care.

Performing re-education Hurst’s more material approach to the problem of war neuroses is evident in the staff he recruited to his hospitals. He recruited neurologists, general practitioners, a retired naval surgeon, but not a single psychologically trained physician (Jones 2012: 350). He made no attempts to integrate himself into the network of other neurasthenia and shell shock hospitals, like Maghull or Craiglockhart, where more psychological modalities prevailed. Initially, Hurst followed treatments favoured by other military physicians without psychological training, including faradization, withdrawing food and isolation (Watt Smith 2014: 172). But through experience he was led to a ‘gradual simplification of methods and increasing certainty and rapidity of cure’ (Hurst and Symns 1918: 139). In the wartime context of high volume patients, simplicity and rapidity were extremely attractive: ‘Our method now is simple persuasion and re-education continued with manipulation’ (Ibid.: 140). Hurst believed that the shell shock he encountered was caused by the excessive nervous strain of combat, the relentless stress of which left the body open to impulses of imitation and suggestion. The tics, mutism, uncontrollable spasms, paralysis, deafness, all could be attributed to the body’s response to a hostile environment, a kind of somatic flight to illness, though Hurst would have rejected any echoes of overt psychology, let alone psychoanalysis in his apprehension of war neuroses. Hurst surmised that if the body was made malleable and shaped by the harsh conditions of modern warfare through the power of suggestion and imitation, then surely that body could be bent back into its proper functional shape by harnessing the same mechanisms, suggestion and imitation (Watt Smith 2014:

Performances of Care

143

176). This explains the rigidity of his approach to the treatment of war neuroses which involved upholding a steadfast atmosphere of cure coupled with the medical staff projecting an unwavering optimism. Hurst described this approach in a 1918 article in The Lancet: [A]n all-important preliminary is the creation of a proper atmosphere. After admission the sister encourages the patient to believe that he will be cured as soon as the doctor has time to see him. If paraplegic or mute, two or three patients in the ward who have been rapidly cured of paraplegia or mutism tell him of their cure. The medical officer sees him some hours later, and after examining him and coming to the conclusion that the condition is hysterical he tells him as a matter of course that he will be cured the next day. By the following morning the patient is fully convinced that the hoped-for cure will take place. (Hurst and Symns 1918: 140)

Physicians, nurses, patients, all were recruited into the ‘atmosphere of cure’ created in the hospital, all required to perform optimism without waver. For Hurst, this enforced optimism produced the environment of care that yielded the unprecedented successes that he claimed for his patients, and that are ‘recorded’ in his film War Neuroses. A fine example of this rapidity and hands-on re-education is found in the fifteenth case, ‘Private Bradshaw: Complete hysterical monoplegia following Salvarson injection March 1917. Had been paraplegic for two months after burial, May 1916. Admitted November 1917 and cured same day’ (16:32). The curious foregrounding of a complication resulting from an injection over the more catastrophically traumatic event of being trapped beneath a collapsed parapet, referred to only laconically as ‘burial’, can be partly explained by the relative prevalence of soldiers living in heavily shelled trenches and muddy landscapes being enshrouded in debris. But the disregard of the ‘burial’ is striking nevertheless. While the patient seems to have partially recovered from the paraplegia induced by his ‘burial’, he presents monoplegia, the paralysis of a single limb, which the intertitle links unequivocally to a Salvarson injection. Salvarson, one of the first synthetic drugs, was designed as a ‘magic bullet’ to treat syphilis (Gelpi et al. 2015: 68), and as such is associated with dubious moral behaviour. This attitude seems to enter into Hurst’s filming of this successful case, one of the few that demonstrates the manipulative re-education at the heart of his treatment. The scene opens when Private Bradshaw attempts to rise from a stool on a tiled open terrace. Curiously, clouds of smoke waft past in

144

Discourses of Care

the background beyond the front pillars. They pass without apparent notice or comment. (But they do echo the fog and smoke of frontline experience, and foreshadow the clouds of smoke Hurst unleashes in the filming of the fictional ‘Battle of Seale Hayne’ that concludes War Neuroses.) Bradshaw in civilian attire and stocking feet struggles to stand upright, and clings to the uniformed medical officer, whose body dominates the middle of the frame, but whose head is absent from the frame. On a daybed placed on the same terrace, Bradshaw, lifts his trembling legs. The next shot is ‘During Treatment’ (17:16). Bradshaw is on an indoor bed, barelegged, his right leg being vigorously manipulated, raised and bent at the knee by the arms of the same officer (so it appears). ‘Cured after ¼ hour’s suggestion and re-education, moves whilst lying down, gets up, and walks’ (17:33), states the next intertitle. In the following shot, Bradshaw pushes himself up from his bed without much struggle. The camera cuts back to the elevated patio terrace and Bradshaw, wearing a necktie and shirt of enormous proportions, sleeves bunched and shirttails hanging below his knees, walks towards the camera. The patient walks to demonstrate his ‘cure’. The rhetoric of a problematic ‘overcoming narrative’ is certainly at play here. But that rhetoric is manipulated so that the triumph accrues not to the patient but to the physician. The hapless patient, with billowing shirt and without trousers, is shown as slightly ridiculous. The ridicule is perhaps a moralistic sleight on Hurst’s part towards a patient whose state of undress, on a bed, can serve as a visual reminder of the ill-advised behaviour that led to the syphilis – and, in turn, to the Salvarson injection that produced monoplegia, and the patient’s stay at Netley. The ‘burial’ of two years ago may be invoked by the background smoke of the scene’s opening but is immediately disavowed by the attribution of the Salvarson injection as the cause of the monoplegia and the visual evidence of the physician’s ability to overcome another patient’s recalcitrant illness. This scene of a formerly resistant patient cured by Hurst’s regime on the day of admission is a scene of patient humiliation and physician triumph, and emblematic of the physician–patient relationship presented in War Neuroses. The very spectacle of film-making, the novelty of the film camera in the hospital and the staging of the scenes captured by the camera aligned perfectly with the prevailing performances of care at Netley and Seale Hayne. Patients were both performers for the camera and performed as audience members for the camera, just as they were first persuaded to be cured and then performed their cures for new patients, an ongoing cycle of curative performance. French neurologists who used film for ‘research and educational purposes’ in 1915 and

Performances of Care

145

1916 form part of the medium context for War Neuroses (Jones 2012: 353), but the performativity in Hurst’s film is certainly indebted to popular contemporary narrative film in at least two ways: humour and spectacle. For Hurst, laughter was harnessed as another tool of persuasion. The fifth case involves Private King, one of the two ‘hysterical “stump orators”’ who arrived at Netley together from the same general hospital in France (6:10). Hurst’s intertitle provides a pithy case background. Both were ‘blown up’ in September 1917: ‘Film was taken 23/1/18, three days after admission to Netley’ (6:20). The patient is introduced with a third intertitle – ‘Pte. King: hysterical gait and speech’ (6:42) – before the camera shows the afflicted modelling his not-yet-fully recovered gait down a walkway before a seated and standing audience of patients heartily bemused by King’s jerky comportment. In the hospital and in some of the parts of the film that twenty-first-century viewers might find most cringe inducing, Hurst ‘encouraged a playful, even humorous response to his patients’ symptoms […] believ[ing] that laughter and fun could diffuse the war-wounded’s obstinate pessimism about the possibility of recovery, and help cultivate a belief in the possibility of change’ (Watt Smith 2014: 198). Watt Smith is not alone in seeing in the jerky gaits of Private King and others Hurst’s echoes of Chaplin’s beloved little tramp, whose belaboured shuffle was in the war years an iconic image for film-going audiences (Ibid.: 199). As evidence of his cure, Hurst shifts ‘two months later’ to the recovery setting of the Devon farm connected to Seale Hayne (8:40), the site of a range of therapeutic light farm duties in the film. Private Sandall, the other ‘stump orator’, is shown leading a cow along a sylvan cow path. And then comes an intertitle that reads like a succinct comedy routine, with the clause following the colon an underscoring of the bookworm punch line: ‘Pte. King digging so incompetently that he was made hospital librarian: he was a bookseller in civil life’ (9:49). The following twenty-three-second scene of King in the field does not disappoint comic expectations. A competent tiller works in the background as a kind of gauge, King in the foreground, flailing away in a performance worthy of Chaplin. He scoops up a clod of soil only to have it slip off before he heaves the empty pitchfork. His foot misses the base when he kicks to drive the fork into the field. Incapable of loading his tool, he tosses little clumps of soil with bare hands. The pitchfork is the key material prop in this comic silent film scene. King wields the pitchfork as an ironic inversion of Chaplin’s key prop. As the little tramp wields his cane with ingenuity and competence, bending its materiality to unexpected purposes, King wields his tool with the ineptitude of a bookworm, bending and stooping himself to compensate for his mechanical

146

Discourses of Care

inadequacy. Regardless of Hurst’s direction, the scene (9:58–10:21) is obviously self-consciously performed according to the tropes of physical comedy in silent film. As Tom Gunning puts it, ‘Chaplin’s work offered something new; he laughed the world into a new physical realm, exploring the ambiguities – indeed the comedy – of the body of modernity. Chaplin’s cinematic body defies verbal description – and that’s the point’ (Gunning 2010: 238). There are fascinating connections between Chaplin and bodies traumatized by war since both are distinctly ‘modern’, as Gunning describes. Hurst concludes War Neuroses with the fictionalized ‘Battle of Seale Hayne’, and a dash of cinematic spectacle. As mentioned above, this faux battle scene is heavily influenced by the 1916 film The Battle of the Somme, ‘the most popular motion picture screened in the UK during the war’, which was seen by 20 million people, nearly half the population of Britain in the six weeks following its late August 1916 release (Jones 2012: 360). As if foreshadowed by the curious smoke that wafts past the terrace behind Private Bradshaw’s treatment ten minutes earlier, the battleground of Seal Hayne is shrouded in smoke. The iconic image of the soldier shot on the parapet as his comrades storm over the top in The Battle of the Somme is prominently revisited in Hurst’s version. In keeping with the ethos of Seale Hayne, Hurst’s version focuses not on the fallen stature of this soldier but on the stalwart efforts of others to oversee his care. Through the performance of film, Hurst’s patients and Hurst embrace the fantasy of the recovered soldiers’ heroic return to battle. But these recovery narratives were just fantasy. Despite Hurst’s claims for his spectacular success, evidence points to the limitations of his patients’ recoveries. They may have been relatively symptom free in the pastoral setting of the Devon countryside, but symptoms inevitably returned when patients were released from the carefully constructed atmosphere of cure. None of Hurst’s cases returned to active duty (Jones 2012: 366). Hurst was not a charlatan, nor did he make claims he believed to be false. It seems that the atmosphere of cure he so carefully stagemanaged and directed brooked no resistance to its optimistic struggle in the face of idiopathic pathologies. Colleagues from the post-war years acknowledged his commitment to his methods. Sir William Osler, Regius Professor of Medicine (Oxford), hailed Hurst’s methods, not so much because they benefitted the patient, but because ‘intelligently followed … [they] should save the country thousands of pounds annually in pensions’ (qtd. in Shepard 2001: 80). Arthur Douthwaite, Hurst’s colleague at Guy’s in the 1920s, thought him ‘brilliant’ but sometimes lacked ‘the power of critical appraisal of his sometimes hastily

Performances of Care

147

conceived theories’ (qtd. in Jones 2012: 371). In a way, he was blind to his own powers of suggestion. Even in 1940, in the face of a new war, Hurst gave a talk at a meeting of the Royal Society of Medicine (Section of Psychiatry) about the treatment of hysteria, accompanied by a screening of War Neuroses, in which he insisted on the value of his ‘direct persuasive methods’ (Report of Societies 1940: 500).

The spectacle of care, or a retrospective ethics I conclude this chapter by considering Ariella Azoulay’s concept of ethical spectatorship as it relates to this film. It is worth noting that to retrospectively apply contemporary ethical values to historical documents and practices offers limited utility. My point is not to condemn or approve of the ethical dimensions of Hurst’s film but to open it up as a cultural text that can offer insights into ethical entanglements contemporary twenty-first-century viewers might confront in this and other like texts they encounter. Azoulay, a visual arts scholar, writes primarily about photography, not film, but her ideas seem particularly relevant to reading the performances of care in War Neuroses. Azoulay’s theory of photography ‘takes into account all participants in photographic acts – camera, photographer, photographed subject, and spectator – approaching the photograph (and its meaning) as an unintentional effect of the encounter between all of these’ (Azoulay 2014: 23). None of the participants has the ‘capacity’, by which Azoulay implies the ethical right, to solely determine the photograph’s meaning, most especially not the photographer (Ibid.). If we substitute ‘film’ for ‘photograph’ and think about War Neuroses, we can apprehend that its meaning is generated by the encounter between all four of the participants Azoulay identifies. First there is the camera, which records the performances played out before it; second, the film-maker, who purports to recruit this new technology to disseminate his ideas, but also to enhance his professional reputation; third, the hapless filmed subjects, who, though mostly named (four out of twenty are not), are stripped of agency (and sometimes dignity) during their re-education; and fourth, the viewers. Initially these viewers were other patients in Netley and Seale Hayne’s atmosphere of cure who observed the spectacle of film-making; some of them were recruited as filmed viewers watching other patients’ recreated performances of symptoms. Later the viewers were physicians attending Hurst’s lectures, members of the Royal Society of Medicine and much later medical

148

Discourses of Care

students studying PTSD (Jones 2012: 363). And later still the viewers become any of us with a computer and a broadband connection. Together, all of these participants – myriad viewers, filmed subjects and film-maker and camera – in the filmic act contribute to the meanings of War Neuroses. Azoulay would caution viewers against accepting at face value the documentary, ‘truth-telling’ aspect of the film. War Neuroses does not capture; it recreates. Film buttressed Hurst’s authority and fostered his capacity to persuade his patients of the veracity of his re-educative processes while helping to obscure the fact that Hurst’s dramatic ‘successes’ had more to do with compelling performances of his patients, the filmed subjects, than with compelling practices of care. The film enacts and embodies the performativity integral to Hurst’s environment of care. It does not exactly record, in an unbiased and unmediated way, the plight and recovery of the individuals it conscripts to the end of demonstrating the power of Hurst’s healing capacity. Instead, the patients are called upon to perform their symptoms, to perform their recovery, all the better to perform the effectiveness of Hurst’s regime of care. The performance of care, in the dramatized and theatrical sense of performance, is paramount. In the end, War Neuroses demonstrates the power and utility of performance rather than the nuances and challenges of care.

References Adrian, E. and L. Yealland (1917), ‘The treatment of some common war neuroses’, The Lancet, 9 June: 867–72. Available online: https​://do​i.org​/10.1​016/S​0140-​6736(​01)48​ 807-6​(accessed 13 May 2018). Azoulay, A. (2014), The Civil Contract of Photography, New York: Zone Books. Brock, A. (1918), ‘The re-education of the adult: The neurasthenic in war and peace’, The Sociological Review, 10 (1): 25–40. Buzzard, E. (1918), ‘Preface’, in L. Yealland, Hysterical Disorders of Warfare, v–viii, London: Macmillan. Gelpi A., A. Gilbertson and J. Tucker (2015), ‘Magic bullet: Paul Ehrlich, Salvarsan and the birth of venereology’, Sexually Transmitted Infections, 91: 68–69. Available online: http:​//dx.​doi.o​rg/10​.1136​/sext​rans-​2014-​05177​9 (accessed 12 May 2018). Gunning, T. (2010) ‘Chaplin and the body of modernity’, Early Popular Visual Culture, 8 (3): 235–45. Hemmings, R. (2008), Modern Nostalgia; Siegfried Sassoon, Trauma and the Second World War, Edinburgh: Edinburgh University Press.

Performances of Care

149

Hurst, A. (1918), Medical Diseases of the War, 2nd edn, London: Edward Arnold. Hurst, A. and J. Symns (1918), ‘The rapid cure of hysterical symptoms in soldiers’, The Lancet, 3 August: 139–41. Available online: https​://ww​w.the​lance​t.com​/jour​nals/​ lance​t/art​icle/​PIIS0​140-6​736(0​1)026​05-8 (accessed 23 August 2017). ‘Hutcheon, Linda and Michael’ (n.d.), University of Toronto UTor Web. Available online: http://individual.utoronto.ca/hutcheons/ (accessed 14 August 2017). Hutcheon, M. (2016), Email to author, 21 June 2016. Jones, E. (2012), ‘War neuroses and Arthur Hurst: A pioneering medical film about the treatment of psychiatric battle casualties’, Journal of the History of Medicine and Allied Sciences, 67 (3): 345–73. Available online: https​://ww​w.ncb​i.nlm​.nih.​gov/p​mc/ ar​ticle​s/PMC​51377​81/ (accessed 12 August 2016). Lindon, S., E. Jones and A. Lees (2013), ‘Shell shock at Queen Square: Lewis Yealland 100 years on’, Brain: A Journal of Neurology, 136: 1976–88. Available online: https​://ww​w.ncb​i.nlm​.nih.​gov/p​ubmed​/2338​4604 (accessed 22 May 2018). Report of Societies (1940), ‘Treatment of war hysteria and neuroses’, British Medical Journal, 23 March 1940: 499–500. Available online: https​://ww​w.ncb​i.nlm​.nih.​gov/p​ mc/ar​ticle​s/PMC​21769​80/ (accessed 14 September 2018). Rivers, W. (1919), ‘Psycho-therapeutics’, in J. Hastings (ed), Encyclopedia of Religion and Ethics, Vol. 10, 433–40, New York: Scribner’s. Shephard, B. (2001), A War of Nerves: Soldiers and Psychiatrists in the Twentieth Century, Cambridge, MA: Harvard University Press. War Neuroses (1918), [Film] Dir. Arthur Hurst, UK: Pathé Motion Picture Company. Watt Smith, T. (2014), ‘A convalescent recoils’, in On Flinching: Theatricality and Scientific Looking from Darwin to Shell Shock, 165–223, Oxford: Oxford University Press. Webb, T. (2006), ‘“Dottyville” – Craiglockhart war hospital and shell-shock treatment in the first world war’, Journal of the Royal Society of Medicine, 99 July: 342–6. Yealland, L. (1918), Hysterical Disorders of Wartime, London: Macmillan.

8

A ‘care-full’ cinema Perspectives on care relationships in French educational film, 1950s–90s Christian Bonah and Joël Danet

Often considered as boring and unsophisticated, educational films, television and videos are in fact numerous and influential since they are viewed by millions of captive audience spectators. These texts therefore act as a useful vantage point for our exploration of how these media forms for professional training and information address practices of care and how they intervene in care providing and caregiving. Our contribution here is in line with a new wave of scholarship concerned with non-theatrical, ephemeral, sometimes orphan audiovisual texts that were previously marginalized by both commercial film industry and film and media studies. ‘Educationals’ are created with the specific intent of imparting knowledge and modifying behaviour. Our question is, therefore, how does this play out when care and caregiving appear in these overtly educational films? By focusing on educational films and thinking about care we are therefore writing and observing from the margins – and the doubly marginal. First, the medical training film usually favours cure over care. In medical educational films there seemed to be little to say about care for a long time. Our chapter offers a first look at how has that changed and what agency these kinds of media have had in the change in care relationships during the second half of the twentieth century. Secondly, we speak from the margins because media history has previously paid little attention to ‘useful’, educational film forms often considered as grey and ‘unhappy’ (Orgeron et al. 2011). To explore the politics and ethics of care relationships as demonstrated in French educational films concerned with health after the Second World War we analysed series of films from three differing educational settings, in chronological

A ‘Care-Full’ Cinema

151

order, from the 1950s, to the 1970s and, finally, the 1990s. They have been collected for and are now part of the collaborative film database MedFilm, an audiovisual platform concerning the history of health (http://medfilm.unistra. fr). As such, they are considered as vectors of information and communication in relation to health policies, prevention and care modalities, whether or not they are addressed to targeted or non-targeted audiences. The first group of films – from the 1950s – belongs to the realm of film creation and screening for school television, yet the films were actually recorded on 16 mm film. These films were shown in classrooms to high school students and were intended to alert them to possibilities for their future choices of profession. Far from contemporary commercial films featuring heroic ‘men and women in white’ or ‘great medical patrons’ (for example, Un Grand Patron (1951), directed by Yves Ciampi) these films present the healing professions and institutions to an audience of teenagers. The second group of films – from the 1970s – emerged when medical postgraduate education integrated the medical film into the curricula as a tool for the training of practising physicians. At this time, medical film production in France and the Western hemisphere generally became institutionalized in the form of medical film libraries often under leadership of the pharmaceutical industry (Hediger and Patrick 2009). Pharmaceutical corporations as Sandoz, Rhone-Poulenc, Spécia, Boehringer, Delagrange UCB, Searle, Ipsen, Roussel, Glaxo among many others set up 16 mm film libraries distributing thousands of films produced by specialized medical and scientific film production companies like ScienceFilm based in Paris and directed by Eric Duvivier (Bonah 2020). Therefore, filmic means and aesthetic ambitions converged to produce these ‘useful films’ (Acland and Wasson 2011) that were co-authored by professional science film directors and physicians for physicians. Although these films are based on an order-based economy, and, as such, they are supposed to enhance the activity and promote the influence of the sponsoring firm, some of these films in fact reflect the critical stance of post-1968 practitioners, questioning the foundations of their care and cure practices and integrating, in particular, recent developments in doctor–patient psychology. The films therefore operate as progressive teaching tools and self-critical educational messages; in terms of their content these films are produced as a hybrid form, with physicians providing scripts which are then turned into film by established film directors. The credits of these films often testify to the close collaboration between the two by announcing a film by ‘A’ ‘the physician’ and ‘B’ ‘the film-maker’. Our final set of films returns to the critical period of the 1990s when in the context of

152

Discourses of Care

the AIDS epidemic, sanitary institutions and medical practices were profoundly affected by patient mobilization requesting more autonomy and challenges to the established patterns of medical authority, prescription and injunction (Buton 2005; Buton 2015; Barbot 2002; Fillon 2009). Mainly produced in video format, these films are genuinely produced and used in joint ventures between state health authorities and patient associations. In our analysis we will deliberately disregard classical visual format distinctions between film, television and video. Instead, by drawing these various texts together we will focus on their primary purpose as ‘message’ films that provide perspectives on situations of care in educational settings. Our analytical unit is – in that sense – functional. Our corpus includes teaching films, television programmes and videos. Their shared focus is on ordinary situations of caregiving, not on narratives of progress or miracle cures with physician heroes. ‘Consulting-the-physician’ is not a plot device here but the main subject of the films. The narrative is not emotional storytelling in a fictional mode where spectator involvement renders analysis of care situations cumbersome. The films present rather than represent care and caregiving and they register and re-project situations and institutions of care in the documentary mode, using on-site settings and real professionals and patients, not actors. Secondly, as educational tools these films are not self-sufficient outside of the context of their projection and use and are more properly understood in relation to the discussion and analysis of the films after their projection (Orgeron et al. 2011). They are not ‘just’ movies but agents within specific media practices, facilitating a mode of education concerning health and practices of caregiving. As such, they employ cinema as a form of interpellation and (re)projection, intended to create a tension between identification and distancing for specific audiences. What is learnt from the film is then mobilized as the spectators put their educational lesson or professional practice into perspective. Our central hypothesis is that these three production and audience contexts employ three different forms of cinematic creation and experience, opening up a space for reflection on attitudes within the caregiver–care receiver relationship and its evolution over time. Our specific focus for this contribution is to explore how directors paid specific attention to the patient’s perspective in the caregiver– care receiver situations screened, a mode of film-making we have labelled ‘carefull cinema’. Within that, we define an initial category as ‘compassionate cinema’ and observe that this mode of address generally depicts the sick person and his/her experience only when he/she is no longer under medical observation,

A ‘Care-Full’ Cinema

153

suggesting a subjective and personal time and ‘space’ of sickness that disturbs or interrupts the patient’s everyday life experience. Placed outside and after the faceto-face consultation with the physician, these film sequences aim to educate or restore the ‘unseen’ aspects of the patient’s experience – their subjective feelings and emotions that are often beyond the physician’s immediate perception. For example, after consultation how does the patient endure their pain or treatment and how has he or she received or interpreted the word of the doctor’s diagnostic sentence (Ostherr 2012)? ‘Solidarity cinema’, our second category, is where we understand that the depiction of the medical consultation and caregiving engage the care provider as central actor and spectator. Care professionals are interconnected through these films: on the one hand, they may relate situations of care that they have experienced as troublesome or as difficult ‘cases’ and, on the other hand, they also appear as spectators who can relate to the experiences of care depicted in the films since they have already encountered or anticipated similar situations. These professional training films are therefore centred on caregiving and care receiving during the consultation process and not afterwards. They are meant to offer professionals self-reflective moments of training where the care provider pays careful attention to the patient’s perspective albeit from the provider’s – the caregiver’s – point of view. The films are not simply intended to interest an audience of professionals in the individual ‘case’ exposed in the film but also to allow them to consider the model of care relationship it necessarily implies. They invite the professional spectators of the films to be self-reflective by analysing the behaviours and positions adopted by their peers representing them in the film. These films ask the professional to consider the following: Have I done the same in a similar situation? Would I do the same if I were confronted with a similar situation? Returning to and reviewing potential and previous consultation scenes, these films and their target audiences are sensitive and attentive – one might say careful – about the patient’s perspectives and experience. Professionals in their reception of these films, through their own reflection and efforts in terms of reform, intend to change the attitudes and dispositions of care providers. ‘Engaged cinema’, our third cinematic category and mode of address, relates to media practices where the voice of the patient becomes autonomous. This filmic trend appeared in the 1980s and 1990s, stimulated by the use of video in professional and associated circles. Audiovisual production was then considered as a tool of moderation for interventions in areas of conflict, or

154

Discourses of Care

as a voice for social minorities in need of expression. Film operates here as a third party between stakeholders who interact within a socially and politically charged context who have conflicting priorities: landlords and renters, municipalities and the homeless, state institutions and users. This requires an implementation team capable of creating the conditions to gather the views of the various parties involved and articulate them to set the terms of the debate in which they may usefully oppose each other. Applied to the medical sector, this approach has encouraged patients and their families to contact doctors and political authorities in charge of their health directly. These films express a point of view that is more engaged and provocative as they relate shared experiences from the side of the medical ‘other’ – the patient or the recipient of care. We will see, through a few examples from each category, that these films have tried to refine the patients’ perspective. Rooted in the daily life of medical practice, they involve anonymous doctors and ordinary patients: it is no longer a question of dazzling the public with the demonstration of modern technology and equipment but of providing them with familiar reference points that allowed audiences to relate these films to their own experience. With regard to production and audience, the films were primarily directed to the medical profession, promoting a critical and reflexive point of view, encouraging the doctor–spectators to be introspective. They resolutely sought to characterize the psychological challenges patients face, or the misunderstandings or communication difficulties they may have experienced during their care. We will see that in each film, the degrees of staging vary. Some films borrow from classic fictional characters, whereas others take advantage of elaborate and adventurous documentary devices. Nevertheless, all these films show the same concern to go beyond an apparently neutral mode of presentation and to favour open forms reproducing as effectively as possible the experience of the practice through realistic descriptions and the capture of spontaneous speech. We suggest through this analysis that these audiovisual educational tools may be used as visual archives and counter-archives to the written discourse on the caregiver–care receiver relationship. For example, they are counter to work that first emerged in the 1980s, including influential studies such as Jay Katz’s The Silent World of Doctor and Patient (1984). In contrast to this, the films allow us to analyse how in discursive, social environments and through gesture and other visual cures, care receiver perspectives and voices were increasingly outspoken and visualized.

A ‘Care-Full’ Cinema

155

Compassionate cinema: Reconstituting patient experience in French school television in the 1950s The production of French school television, aimed at supporting teaching through classroom broadcasts, has regularly dealt with the field of health but has never been limited to simply imparting information. Several films have used fiction to project students into the human situations with which medical practice is a key aspect. Far from espousing a solely technical point of view, the staging in these films does not separate the medical act from its consequences. In the case of educational medical cinema addressed here, we can point to the inclusion of short sequences that are otherwise useless for the main plot and which conveys a side view when a minor character leaves the main action. In the terms provided by the film scholar Alain Bergala, these could be identified as ‘compassionate sequences’ (‘plan de compassion’, Bergala 2014). These are sequences associated with characters who play no further role in the film (and who are not central to the plot) but whose fate is intended to touch the spectator, so that while the characters are dismissed from the main action (and often this means the medical consultation), this is done with compassion. From our ‘carefull’ cinema perspective these scenes refer to a second dimension of meaning. They are intended to display and signify the backlash a patient will experience when faced with the announcement of difficult news. The sequences illustrate to their young spectators how different patients may ‘cope with bad news’ and show how a patient reacts when he/she has left the doctor’s office. In these ‘the moment-after’ sequences, film production is attentive to the ‘afterwards’ and the medical ‘hors champs’ reflecting what happens when the sick person has left the caregiver and when they are alone, in a moment of truth, they let go and express emotions that are usually inaccessible to the caregiver. Let us work through an example of this: the 1959 film A Country Doctor (Un médecin de campagne) directed by André Canténys and produced for the French National Educational Film Board/Centre National de Documentation Pédagogique, is a first-person account by a medical student who is completing his internship with the rural family physician, Doctor Martin. The film is intended to show school teenagers the real professional life of ordinary family physicians and general practitioners. During a consultation scene, Doctor Martin announces to a young woman that she has a primary TB infection and that she will have to go to a sanatorium for a cure and therefore needs to leave both her job and her children. The following sequence shows the woman on the doorstep

156

Discourses of Care

of the doctor’s office as she slowly walks down the stairs in complete silence. Although she is crying, her face is otherwise void of expression as she unfolds a handkerchief to dry her tears before leaving the camera frame. The film sequence is of interest since it contrasts with the rest of the mise en scène that has been organized around the principle that the shots are organized from the exclusive point of view of the medical intern (as the observer’s point of view). Since the beginning of A Country Doctor, the viewer recognizes that while they may not be from an exclusively subjective position, their view of events is controlled by an identified point of view – that of the medical student. Like the student, the spectator discovers the places where the internship takes place and meets, along with the student, the different people involved in this internship – the doctor, his wife, his peers and his patients. However, the sequence which shows the woman diagnosed with tuberculosis leaving the doctor’s office succeeds a sequence during which we see the trainee and the doctor exchanging looks of dismay and concern – here the female patient is out of sight of the student. This exchange of looks, which contravenes the overall narrative principle, shows there is no specific need to focus on this distressed woman immediately after she has left the consultation room. Useless to the story, this additional sequence is intended not to allow viewers to break brutally with the female patient. Instead, the sequence, as a ‘moment outside’ or the ‘after’ of the diagnosis scene, prompts the audience to consider the impact of the physician’s statements and so provokes spectator compassion. It works as a fleeting instance reflecting on the limitations of the ‘silent world of doctors and patients’ – a world where caregivers exchange silently knowing gazes or institutions paternalistically pronounce that things will be alright. In opposition to this, the ‘compassion sequence’ provides a brief interlude that offers an awareness of the patient’s perspective. But it does no more than this. Indeed, it simply anchors the film in the realities of a precarious population, providing an opportunity to draw the viewer’s attention to this moment of vulnerability, but then suggesting, implicitly, that the patient must, now alone, take the news that the doctor has just told them and ‘cope’ (Figure 8.1). In a second film produced for the National Educational Film Board Children like the Others (Des enfants comme les autres), directed in 1955 by Pierre Neurisse, a young mother is alerted to the visual problems of her daughter. Clinical examination establishes that the young girl has amblyopia, a severe eye condition resulting in distorted seeing, which at the time required admission to a special institution for the handicapped and the blind. Before the film concentrates on its primary mission of presenting the Eye Institute, the camera follows the mother.

A ‘Care-Full’ Cinema

157

Figure 8.1  Woman walking down the stairs, crying (A Country Doctor/Un médecin de champagne, 1959).

As she walks alone down the street the voice-over comments, ‘On the way back, the director’s voice is still resonating, reassuringly.’ Yet a close-up on the mother’s face signals her anxiety and distress. Walking among the anonymous crowd of the city, she apparently drops her mask. She does not have to pretend that she is strong as she did previously in relation to her daughter and the director of the Institute. Uniquely, by taking this small diversion, cinema can convey this situation where a mother, sheltered from the view of her environment, gives in to her despair. As in A Country Doctor, the narrative function of this sequence is to leave a character without brutality, to provide a short moment to understand their point of view, by letting them express their distress. The ambiguity of the sequence is part of its effect: the voice-over of the director resonating within her, addressed to her and the spectator in a paternalistic stance, is revealed to be unable to reassure her completely as we witness her visual expression of grief and anxiety. The contradiction between the voice-over and the visual opens a space within the film for interrogation, asking the audience to consider the ‘after’ of the initial confirmation of a serious diagnosis. The voice-over confirms that she has agreed to let the school take over the care of her child. In this sequence the film presents an insight as to the feelings of a mother who has to face the psychological separation with her child as a consequence of the child’s illness and her need for care. In both films these diversionary sequences are not useful

158

Discourses of Care

for the main plot. Following Bergala, we can regard these as compassionate sequences intended to touch the spectator, so that while the characters are dismissed from the main narrative, this is done with compassion. ‘Care-full’ cinema may then be distinguished by the inclusion of these ‘the moment-after’ sequences.

Solidarity cinema: Peer view analysis of doctor–patient relationships in postgraduate medical teaching film Our second corpus of films – produced in the 1970s – addresses the question of the doctor–patient relationship directly. In these films, ordinary physicians become the principal characters in a mise en scène that evokes patient experiences of specific illness in given situations and environments. Drawing on physician’s ability to film in hospitals and consulting rooms and aesthetically connected to contemporary developments in ‘cinema direct’, these films immerse the spectator in real caregiving environments. Rheumatology and the Doctor-Patient Relationship was directed by Eric Duvivier in 1976 and based on a book written by the psychoanalyst Michel Sapir and presents a series of real-life medical interrogations or medical anamnesis during consultation, in a manner reminiscent of clinical case histories used in teaching films for psychiatry from the 1920s (Bonah and Rotzoll 2015). Here, the staging device invites the doctor–spectator to step back from his practice and the relationships it usually stages. Indeed, the film alternates sequences involving a doctor, Professor Quenau, and a patient in dialogue, with later sequences shot in an editing booth where the same Professor Quenau is invited to review these initial consultation images on a viewer. He then analyses them in the company of Michel Sapir, in a conversation that aims both to refine the view of the patient’s behaviour and to highlight what, from this behaviour, may have escaped the doctor when he was first examining the patient (Figures 8.2 and 8.3). The physician’s viewing of the film within the film is a device to distance the ‘medical expert gaze’ so that the film is no longer presenting the ‘Doctor’ as the sole knowledgeable ‘expert’ but as someone who is working towards a diagnosis, and who needs to do this via discussion and self-criticism. The filmic strategy of parallel mounting of filmed case histories and their subsequent analysis on screen by a medical authority is intended to highlight

A ‘Care-Full’ Cinema

159

Figure 8.2  Patient account (Rheumatology and the Doctor–Patient Relationship, 1976).

Figure 8.3 Switch to mounting table discussion (Rheumatology and the Doctor– Patient Relationship, 1976).

caregivers’ uncertainties, hesitations and even shortcomings, and exposes a situation where the physician is less a knowledgeable expert, than a practitioner faced with doubt and failure. From the first five minutes of the film, when the patient filmed in consultation explains to Professor Quenau that the medical follow-up he received, following numerous work stoppages, had no decisive

160

Discourses of Care

effect on his physical health and the depression he suffered as a result, Professor Quenau notes, ‘Through the failure of the escalation of drug and surgical treatments, it is certainly the failure of the medical power and the institution.’ At the end of the presentation of the various cases envisaged by Professor Quenau and Dr Sapir, the latter asks himself ‘how much the doctor, indeed, must seek to understand but at the same time, maintain a certain distance from his patient’. But what does it mean to ‘keep your distance’? Self-critical reflection and a reflection on iatrogenesis – the doctor’s participation in constructing or entertaining disease – are at the heart of the filmed commentaries and of the film itself. The film functions like a mise en abyme of the medical gaze and medical power and exploits the ability of cinema to ‘double’ the real. Even more explicit in terms of its title, Short-comings in Emergency Care was produced according to the same principle ten years later, in 1985. Shot in the psychiatric emergency department of the Hôtel-Dieu in Paris, this film similarly alternates between care scenes, filmed in the ‘direct cinema’ mode (i.e. without the intervention of the director and with as few cuts as possible in the editing of the sequences), and scenes shot in an editing room where the previously filmed scenes are subjected to the analysis of Dr Grivois, a psychiatrist. Animating the different analytical scenes, another doctor asks Dr Grivois about the motivations for the psychiatrist’s intervention in each of the emergency scenes that has just been filmed. The tone of questioning is no longer entirely beholden to the apparent authority of the specialist medical practitioner, and the questioner openly interrogates the validity of the intervention, for instance, where he comments in relation to one scene: ‘Here, (the patient) is very calm, he is talking to a psychiatrist. But anything he says, he could express to an intern on duty. What does the psychiatrist bring? It wasn’t for him particularly, anyone could have made him talk that way.’ In this instance, the doctor who questions Dr Grivois acts as a surrogate for the voice of the spectator who may not be convinced by the example that he or she has just seen. It is up to Dr Grivois – as the psychiatrist – to defend his position by calling for a better interpretation of the images. The images here are now read dialectically, and are no longer presented as an unambiguous demonstration, or simply as an illustration for medical practice. Following Balint/Sur les traces de Balint produced in 1977 is distinct from the previous two films in that it depicts a discussion group – bringing together a group of doctors – rather than a single pair of physicians. This film’s intention is to demonstrate the usefulness of the group-oriented approach initiated after the

A ‘Care-Full’ Cinema

161

Second World War by the psychoanalyst Michael Balint. It is also an opportunity, through the restitution of a typical session, to access the authentic speech of physicians, even when their discussion expresses a doubt in the diagnosis or indicates their ethical unease, often caused by prejudices that ‘make noise’ in the establishment of a therapeutic relationship. In this instance, however, there is no audiovisual replay of the recording of a consultation and recall of cases is limited to verbal narratives. Following Balint returns to ‘real’ clinical situations that were first noted down by physicians participating in a Balint group (a peer group for psychoanalytical professional experience exchange and analysis) which has been adapted and replayed by professional actors performing as the physicians who originally participated in the peer group meetings. Consisting of a ‘behind closed doors’ discussion of a group of physicians reflecting on different situations of consultation and caregiving they are prompted by the group leader’s invitation – ‘Who has a case?’ (Figure 8.4). Details of specific doctor–patient relationship pitfalls follow as they are interpreted collectively under the supervision of the group leader. At the centre of the discussions – and the film – are self-critical physicians’ testimonies of professionally difficult relationships or situations that are then analysed within this peer group. Situations include an aversion for an obese man, attraction for a young woman, or irritation with an inconsistent character: at the heart of the film are emotional reactions of the doctors to the ‘Other’ of their consulting subjects.

Figure 8.4  Balint group discussion (Following Balint/Sur les traces de Balint, 1977).

162

Discourses of Care

The cinematic choice to re-enact these real situations using professional actors rather than filming the physicians themselves underlines the film director’s choice to pay privileged attention to the physician’s emotions as interpreted and emphasized by the work of the screen actors involved (including celebrities such as Michael Lonsdale and Robert Wilson). Shared verbal exchanges about care relationships and mutual support are at the heart of the screen experience for the caregivers mirroring their own lived caregiving experience (Bonah and Danet 2017). In the three films analysed in this category, the screened discussion between practitioners invites the physician–spectator to situate the reality of his/her practice in the multitude of similar experiences provided by his/her peers and aims to overcome resistance to the acceptance of individual blame or guilt when critically scrutinizing his/her attitudes and disposition. The sense in which the physician is being told, ‘You are not alone’ means that the more discomforting and fragile aspects of a (self-)critical reappraisal are mitigated as they are interpreted or imagined as a delicate and careful dialogue between peers. Professional solidarity is used here in the attempt to break with an authoritarian, paternalistic expertise. This intent is aligned to the self-critique of cinema itself, in the post-1968 film industry. For internal use, these films are ‘haunted’ by the third-party ‘patient’ and seem to be less about the study of the patient’s disease than a report and investigation into misunderstandings during consultation. They expose the underlying incommunicability that burdens medical practice that no analysis could exhaust. In this respect, the films are ‘open’ documents, which privilege witnessing over learning and reflection over response, even if it means weakening the image of the profession. They establish from within, a reform movement that reflects critically on medical nemesis, described in 1974 by Ivan Illich as the expropriation of individual’s health by medical professionals (Illich 1974; O’Mahony 2016).

Engaged cinema: Facing patient activism on the screen The films that sit within our third category raise the question as to whether we are still in the realm of educational cinema. These films, which focus on the issues of AIDS, are not directed at a targeted audience of medical professionals, but seem to present themselves as creative, sole-authored documentaries aimed at a general public. One educational aspect remains. The cinematographic austerity

A ‘Care-Full’ Cinema

163

of these films and the density of their content indicate that we remain far from the kind of spectacle of promotional or mainstream cinema, where fiction is used to dramatize the plot of the film, and where film stars are employed, or where animation is integrated into the visual narrative to enhance the audience’s comprehension. The films discussed in this category are more like documents. Professionals from within the healthcare system are called upon as an audience to look at them, but they are no longer the exclusive or primary audience for the films. Medical professionals are solicited by these films in the same way as members of patient associations, political leaders or any other stakeholder in debates initiated in relation to improving patient support, including prioritizing investment in research, choices made to communicate prevention and, above all, a reflection on the forms of social cohesion required by isolated and suffering patients. Professional caregivers are invited to study these films as evidence alongside other spectators whether they are from patient movements, the political sphere or civil society in order to get a better idea of what living with AIDS implies. Understood from a production point of view, these videos articulate a model of social mediation between the conflicting views of caregivers, care receivers, political actors and society as a whole. In the educational films we have approached in this chapter so far, patients were represented sometimes as fictional characters, sometimes as case studies in documentary recordings, or sometimes simply evoked in reconstructions of conversations between doctors. In none of these films do we see them as central protagonists who speak directly to the viewer about their truth or about their experience of care. In this last category, however, which we would term as an ‘engaged cinema’ it is now the care receiver who takes charge of the story and it is his/her voice and his/her body that animates the images. The care receiver is now positioned as an autonomous expert and no longer as a subject of study. Giving the care receiver a voice means forcing physicians and caregivers to listen to the patient – to learn their lexicon and what matters to them. The documentary form here is established as part of their treatment with the form of interview and investigation outside the limits of the usual professional space of care. The camera is here no longer an aid to an analytical discourse, providing professionals with apparently objective documentary evidence: instead it opens up a new space for the patient’s story. Freed from the pressure of a power relationship with a medical authority, or the challenge of a therapeutic response, this third category of a visual discourse of care refers to the totality of a social experience and the intransigent logic of a given interiority.

164

Discourses of Care

This shift to a fully engaged ‘care-full cinema’ is supported via the momentum of the post-1968 movements which sought to increase the number of forums accessible to social minorities, including official productions, and it corresponds directly to the new positioning of the patient after the collective tragedy of AIDS. The new positioning is determined by the absence of a therapeutic response and by the rise of patient associations. Mobilizing both the views of care receiver and caregiver, these documentaries address the first-person experience of living with AIDS, demonstrating the daily routine of the sick and depict illness as a narrative. Here, criticism of medical institutions and biopower is aligned with the powerlessness of the patient and the inadequacies of the organization and technological bureaucracy of sanitary institutions that were overwhelmed by the emerging disease. Furthermore, following the sexual revolution of the 1970s the emergence of AIDS informed and challenged previous models of ‘safe sex’ debates, reintroducing moral questions into social debate. Testimonies and interviews address these subjects frequently in these health education videos often co-produced by state institutions and patient associations. The attention given to the voice of the patient – which goes beyond the framework of care planning and practice – even if it means giving free rein to their critical discourse alongside the concern to allow us to fully enter into his/her experience is particularly acute in Witnessing Tritherapy/Témoignages sur les trithérapies. This video was directed by Pierre-Yves Attia in 1998; the scenario was written by Catherine Tourette-Turgis, an assistant professor for health education and founding member of the association How to Say/ Comment dire (Contal 2013). The association, created in 1991 and accredited by the French Ministry of Health, supports health professionals and patient association personnel communicating AIDS-related health messages to the public by developing tools for information and education including audiovisual materials. Witnessing Tritherapy is therefore intended to create awareness about the constrictions on the everyday life experiences of HIV-infected persons despite what was otherwise considered as the revolutionary progress in handling the disease. Centred on the side effects of the therapies and drugs and the complications of compliance, Witnessing Tritherapy opens with an early morning scene in which indistinct forms progressively take shape: the silhouette of a tree emerges from a dark skyline, lights flash from a piece of technical equipment in a room. Over these images we hear the sound of a generator, the kind of noise we usually only perceive in the morning silence before the business of the day begins. The following sequence transports the spectator abruptly into

A ‘Care-Full’ Cinema

165

a room that is already lit. A young man opens his eyes and wipes his hands over his face. His first gesture consists of grabbing a tube of medicines that have been placed next to his bed. He swallows them with a glass of water that seems to have been equally prepared for his morning routine. We see the patient take the prescribed medication at the prescribed time. In sympathy with him, the viewer experiences the interruption of his sleep and the fear of missing a dose. Later in the film we find the protagonist, now dressed, sitting at his living room table, which is covered with boxes and tubes of medication. He explains, ‘I take this at 7 am, this at lunch, these at 6 pm, those for diner and these at 11 pm. OK, that one is difficult to take since you have to dissolve it first. Not easy when you are outside. When you take it you have to have water with you or go to a café: rather expensive.’ Later in the film he relates the drugs’ side effects and explains how these have caused him to lose his job and have his girlfriend walk out on him. No longer constrained within the hospital site or the medical office the patient’s testimony is fixed in his territory, his home and embedded within the intimacy of his ordinary everyday life. The scene is reminiscent of the writer and AIDS sufferer Hervé Guibert’s video journal La pudeur et l’impudeur produced between 1990 and 1991 which was screened on French television (Figure 8.5).

Figure 8.5 Opening scene, at dawn (Witnessing Tritherapy/Témoignages sur les trithérapies, 1998).

166

Discourses of Care

In a series of films like the one described here, the illness narrative becomes tangible through the intimacy of the films’ setting. Spectators are directed to the ‘infra-ordinary’ details of suffering while the patient struggles to exist. The concept of ‘infra-ordinary’ is borrowed from Georges Perec. The concept emerges from his writing and in particular his book L’infra-ordinaire where he observes, ‘In our haste to measure the historical, the significant, the revealing, let us not leave aside the essential: the truly intolerable, the truly unacceptable: the scandal is not the firedamp, it is the work in the mines. “Social inequality” is not “worrying” in times of strike, it is intolerable twenty-four hours a day, three hundred and sixtyfive days a year’ (Perec 1989). Transferring this concept – the intolerable aspect of the ‘everyday’ – to the experience of illness captures the essence of this ‘engaged cinema’. In this category of ‘care-full’ cinema, videos are made by care receivers for caregivers to allow them to experience, close up, the raw reality of illness. In these films, the focus is on the ordinary and ongoing experience of suffering, the hidden ordeal of an illness that continues to afflict the subject before and after the visit to the caregiver. These films no longer reflect the caregiver’s version of the patient’s story and no longer present a situation where the physician might expect praise and gratitude for immense medical progress – the first successful AIDS therapy – instead, the focus is on the patient’s perspective, which suggests that what is being experienced is a form of survival rather than properly ‘living’. There is now a close bond between film-maker and patient-as-subject. As the director of the film, Attia, observes, ‘My trajectory as a documentary film-maker for the last twenty years has always brought me to become intimately acquainted with and establish a long term involvement with the protagonists of my films’ (http​://fr​ .viad​eo.co​m/pro​file/​pierr​e.yve​s.att​ia). The film-maker has, in this third category of health films, swapped sides. He is working radically with and for the patient. This is the key difference in the move from compassionate to an engaged cinema. The interviews in Witnessing Tritherapy employ current everyday language and provide simple explanations. But it is the context of their enunciation that varies and which matters. The film now amounts to an exchange between the director and the patient, one that is mediated by the camera and the microphone: it is no longer shaped or performed as a medical consultation. Another step towards an engaged cinema operating as a mediating tool associating and confronting the caregiver and care receivers’ words and worlds appears in films such as Living with AIDS /Le SIDA, vivre avec co-produced in 1988 by French Social Security and the patient association AIDES. This series of three films shows patients complaining about the conditions of their reception

A ‘Care-Full’ Cinema

167

and treatment; nurses confessing their fear of being contaminated when handling the patients; and physicians deploring insufficient and inadequate information about the disease in the public sphere. One scene, staged in an apartment, shows two men sitting next to each other on a sofa. One of them, diagnosed with AIDS, describes how he was received in a general hospital. His sheets were made of paper and his cutlery of plastic, unlike the other patients. ‘It’s offensive, and you don’t sleep well in paper sheets. They tell you: “You are sick, you are contagious.”’ He adds that the relatives and friends who came to see him were invited by the caregiving team to wear masks and gloves. A friend, who was ‘very well informed’ refused to wear them, he comments, ‘She was right.’ The principle of another film, AIDS, a History without End/SIDA, une histoire qui n’a pas de fin, is similar. The film was produced in 1993 by the French Agency for Fight against AIDS. Co-directed by Paule Muxel et Bertrand des Solliers, it follows a project where the two directors had worked in a psychiatric ward on a documentary (Figure 8.6). This is another series, this time consisting of two films: one dedicated to the words of patients (Words from One to Another/Paroles de l’un à l’autre), the other to the words of caregivers (Words of Care-Givers/Paroles de soignants). In the latter film, the speakers are filmed in mid-shot as they are driving a car around town. The confined atmosphere of the driving car becomes a space of confidence where the speech of the caregivers becomes a confession. The choice of this immensely intimate and cinematographic film setting – comparable to the set-up of Abbas Kiarostami’s film Ten (Abbas Kiarostami 2002) in which

Figure 8.6  Talking about AIDS (AIDS, a History without End / SIDA, une histoire qui n’a pas de fin, 1993).

168

Discourses of Care

a female taxi driver engages in a series of intimate conversations with a number of different passengers – reinvents the way in which personal observations and emotions are expressed by the protagonists in the medical film. In Words of CareGivers one of the physicians comments, ‘I never thought that that could happen to me in my professional life, a new disease that I discover. I thought that that is impossible in the twentieth century. […] Fascinating, but we were not prepared for that.’ Another adds, ‘Even in our internal training sessions, physicians made unthinking remarks about it being the patient’s fault. It is the fault of the sick person if he/she got the virus that has transferred into the ecosystem of the community of humans.’ It is the engaged nature of the cinema with the patient’s discourse that triggers caregivers reflectiveness and obliges them to fully confront the patient’s words and worlds. This mode of health cinema therefore becomes a tool of moderation for interventions in conflict areas between caregivers and care receivers. It is interesting to observe that in films like Living with AIDS or AIDS, a History without End no indication is provided for the spectator as to who is talking, or whether they are a caregiver or a care receiver. The spectator has to figure this out him/herself from the words spoken as the director works to provide the same level of credibility to the expert and the lay person as well as the physician and the patient. In this cinema both perspectives are equally valuable. Engaged cinema displaces the caregiver as spectator and demands that they engage in a different dialogue with the medical ‘Other’, who we might now understand as an ‘im-patient’ or an ‘un-patient’. This engaged cinema is more than just a mediating tool or technology to enhance so-called caregiver empathy. In the context of this visual discourse analysis this means that the discourse is now open-ended and that the negotiation between caregiver and care receiver is more symmetrical and the films are grounded in and concerned to provoke actual dialogue between care receiver and caregiver. These visual discourses of care signal the destabilization of the representation of silent, paternalistic or even godlike acts of intervention that previously characterized the perception of the world of doctors and patients.

Conclusion Our objective has been to analyse the strategies of mise en scène and narrative employed in these films to engage the audience (professional or not) and to ask

A ‘Care-Full’ Cinema

169

them to reflect upon their professional personality and their routine practice in everyday caregiving and ‘care-full’ relationships with patients. In these instances of medical educational cinema, film-makers propose to the caregiver – as spectator – that they should distance him/herself from his/her routine practice by observing it from someone else’s point of view, whether this is from the perspective of a professional peer or the patient. ‘Care-full’ medical cinema has always aimed to offer the opportunity for self-reflection, as can be seen from its very beginning, for instance, in the surgical films produced in 1900 by Eugène Doyen (Lefebvre 2004). The depiction of actual working conditions is essential in each instance: screening sickness and care in their ordinary, everyday settings allows the professional viewer an opportunity for identification. In our first category, the inclusion of a compassionate sequence – which shifts the storyline for a short moment to the patient revealing his or her suffering and emotions – makes this experience visible to the caregiver–spectator. The increasing significance of the psychology of the caregiver–care receiver relationship is concomitant with the aesthetic and narrative shifts in educational film, which, since the 1950s, as we have demonstrated, follows a path from compassion to solidarity to activism. The films described here not only function as visual testimonies opening a perspective of alterity to the medical ‘Other’ but specifically produce a mode of displacement and intrusion intended to cinematically visualize a professional blind spot. From the professional’s point of view this is the ‘unseen’ subjective experience of the patient. Visual media and their discourses are conceived here not merely as a mirror or expression of the care relationships they depict but as media and art endowed with their own distinct, interactive, performative power. This matters because the approach goes far beyond fostering empathy and improving the caregiver’s bedside manner, as this ‘care-full’ cinema evolves to provoke critical analysis which situates the sick person as a constitutive and active agent in caregiving, diagnosis and treatment – no longer a ‘patient’ patient but a subject invested by and investing in sickness. It is precisely this critical and engaged perspective, rather than the morally educating stance of these films, that makes returning to these orphan films in teaching medical humanities so useful today (Bonah and Danet 2014).1

Note 1 That is the aim of the Strasbourg Medical Humanities department MedFilm internet platform (Bonah and Danet 2017) concerning the history of health. Implementing

170

Discourses of Care

a mixed-method approach by collecting and providing direct access to a corpus of medical and health related to twentieth-century ephemeral ‘utility’ films, including the films studied here, combined with their descriptive analysis and complementary archival non-film materials intended for contextualization (http​s://m​edfil​m.uni​stra.​ fr/wi​ki/Ac​cueil​).

References Acland, C. and H. Wasson (eds) (2011), Useful Cinema, Durham: Duke University Press. Bergala, Alain (2014), Conference in the Cinémathèque française, Le plan-séquence, 5 October. Barbot, J. (2002), Les malades en mouvement: la médecine et la science à l’épreuve du sida, Paris: Balland. Bonah, C. (2018), ‘Business and art: Pharmaceutical industries, film production and circulation, and the French film production company science film, 1960–1980’, in V. Hediger, F. Hoof, Y. Zimmermann and A. Scott (eds), Films That Work Harder: The Global Circulations of Industrial Cinema, Amsterdam: Amsterdam University Press. Bonah, C. (2019), « Réservé strictement au corps médical » : l’industrie pharmaceutique, les sociétés de production audiovisuelles d’Eric Duvivier et les stratégies de marketing scientifique, 1950–1980 », Cahiers d’histoire du CNAM, N° spécial Le cinématographe pour l’industrie et dans les entreprises (1890–1970): histoire, acteurs, usages et configurations, forthcoming (2020). Bonah, C. and J. Danet (2014), ‘MEDFILM Enseigner « par et pour la recherche » : les SHS en milieu médical à l’aide du film « utilitaire »’, in A. Bernard, M. Dell’Angelo, S. de Montgolfier, A.-S. Godfroy, M. Huchette, A. Mayrargue et C. Roux (éds), SHST 2013-UPEC: sciences humaines en sciences et techniques – Les sciences humaines dans les parcours scientifiques et techniques professionnalisant: quelles finalités et quelles modalités pratiques?, SHS Web of Conferences13, 04001, pp. 1–24. Available online: http:​//dx.​doi.o​rg/10​.1051​/shsc​onf/2​01413​04001​ (accessed 28 August 2019). Bonah, C. and M. Rotzoll (2015), ‘Psychopathologie en mouvement. Histoire des films psychiatriques à Strasbourg et à Heidelberg’, in C. Bonah et al., Le Pré-Programme, 255–280, Heidelberg-Strasbourg: Verlag A 25 Rhinfilm. Bonah, Christian and Joël Danet (2017), ‘Le moment anthropologique du cinéma industriel pharmaceutique. Retour sur le film utilitaire médico-pharmaceutique francophone des années 1970’, Images du travail Travail des images, Special issue N°4 « La relation soignants/soignés à l’épreuve de l’image », eds. Lucia Candelise, Sylvaine Conord, Nadine Michau and Gilles Remillet 4 (2017). Available online: http:​//09.​edel.​univ-​poiti​ers.f​r/ima​gesdu​trava​il/in​dex.p​hp?id​=1436​ (accessed 28 August 2019).

A ‘Care-Full’ Cinema

171

Buton, F. (2005), ‘Sida et politique : saisir les formes de la lutte’, Revue française de science politique, 5: 787–810. Buton, F. (2015), Socio-histoire de l’Etat sanitaire, Mémoire pour l’Habilitation à diriger des recherches: Université Lumière Lyon 2. Fillon, E. (2009), À l’épreuve du sang contaminé: pour une sociologie des affaires médicales, Paris: Éd. de l’École des hautes études en sciences sociales. Hediger, Vinzenz and Patrick Vonderau (éds) (2009), Films That Work: Industrial Film and the Productivity of Media, Amsterdam: Amsterdam University Press. Katz, Jay, (1984) The Silent World of Doctor and Patient (Baltimore, MD: Johns Hopkins University Press. Illich, I. (1974), Medical Nemesis, London: Calder & Boyars. Lefebvre, T. (2004), La chair et le celluloïd. Le cinéma chirurgical du docteur Doyen, Brionne: Jean Doyen Editeur. Maryse Contal (2013), Communication audio-visuelle sanitaire: étude d’un corpus de films de prévention contre le sida produits entre 1987 et 1999, thèse, Université de Strasbourg. Orgeron, D., M. Orgeron and D. Streible, éds. (2011), Learning with the Lights Off: Educational Film in the United States, New York: Oxford University Press. O’Mahony, S. (2016), ‘Medical nemesis 40 years on: The enduring legacy of Ivan Illich’, Journal of the Royal College of Physicians of Edinburgh, 46 (2): 134–9. Ostherr, K. (2012), Medical Visions: Producing the Patient through Film, Television and Imaging Technologies, New York: Oxford University Press. Perec, G. (1989), L’infra-ordinaire, Paris: La Librairie du XXe siècle. Ten directed by Abbas Kiarostami, 94’, 2002.

9

Assessing changes to the welfare state An investigation into the effects of regional media on local services and recipients of care in 1980s North East England Ben Lamb

This chapter examines how different forms of regional media challenged 1980s welfare reform on a local level. Using a critical discourse analysis, I will assess how regionally produced ITV Tyne Tees content – broadcast exclusively within North East England – educated viewers about the purpose of the welfare state. This material is then compared to the discourse utilized by Newcastlebased production companies Trade Films and Amber Films, who provided an alternative context through which community care issues could be discussed. Then this study investigates what the working practices of each production company were and if there was any resultant impact to health and social care services. I will apply Eva Feder Kittay’s ethics of inclusion to regional productions to determine how grassroots media outlets can intervene as a mode of care, as well as providing representations of care. Landmark historical studies by Lowe (2005), Glennerster (2007) and Fraser (2009) have charted how social welfare policy was transformed by central government. Regionally, Doyle (2007) and Webster (2002) have investigated how national policies were translated into practice throughout the North East in the interwar years. However, historians have not investigated how regional television or community-based media intervened in social security reform. This is especially important given social policy implementation is understood as a ‘complex web of decisions and actions, resulting in change and avoidance of change, taken at every level within the government machine’ (Lowe 2005: 62). An accurate understanding of past challenges is essential to future

Assessing Changes to the Welfare State

173

discussions of care, as the welfare state’s purpose continues to be debated amid austerity. In the 1980s social care services received their most radical shake-up since 1945. The 1988 Griffiths Report stipulated that local authorities should ‘enable’ rather than ‘provide’ services in partnership ‘between individuals, their families, voluntary associations and the state’ (Fraser 2009: 309).1 This starkly contrasted with the 1966–8 Fulton Committee, which stated the civil service should be ‘active and positive’ rather than ‘passive and regulatory’ in handling the ‘social’ and ‘economic … problems of our time’ (quoted in Lowe 2005: 98). Meanwhile Tyneside-based Amber and Trade were instrumental in negotiating the 1982 Workshop Declaration, which ensured a network of non-commercial production units were recognized by the Association of Cinematograph and Television Technicians (ACTT) union. Regional and national funding were now secured ‘to resource production’ alongside Channel 4, which broadcast Workshop productions weekly (Thomas 2011: 196). Amber – founded by Murray Martin in 1968 – documented North Eastern working-class localities by adhering to Collingwood’s philosophy that the artist acts as ‘spokesman of his community’ (Collingwood 1958: 324). Trade – under Stewart Mackinnon – explored major forces shaping the North East’s ‘industrial, economic and social structure and the working class response to it’ in collaboration with trade unions (Davis 2014: 30).

Defining care According to contemporary nursing textbooks, providing ‘care’ is to balance between ‘a sensitive regard for the unique needs of the individual person, as valued in themselves’ (moral theory) and ‘the general duty of care based on a contractual and institutional duties and rules designed to protect the vulnerability of those who depend on the care and protection of others’ (ethics) (Thompson 2006: 122). How doctors and nurses are instructed to balance personal morals with ethical guidelines changes over time. Before the 1960s the philosophy of Thomas Percival’s Hippocratic Medical Ethics (1803) still underpinned medical professionals’ approach towards care; doctors were instructed that ‘patients were to be protected from information and the burdens of decision making’ within a paternal doctor–patient relationship (Brannan 2012: 3).2 Now the British Medical Association’s (BMA) ethical guidelines insist providing care must

174

Discourses of Care

‘respect patients’ autonomy’ (Brannan 2012: 2). Patients are perceived as best placed to interpret what is in their own interests and so ‘good communication is critical’ (Ibid: 744). As such, providing care is to fully restore patient ‘autonomy’ and ‘recover their independence’ (Thompson 2006: 121). However, according to ethicist Eva Feder Kittay this notion of ‘autonomy’, from a justice perspective, characterizes ‘assistance as a limitation’, so the ‘carer’ and ‘cared for’ are inadvertently ‘unequals’ (Feder Kittay 2011: 49). To eradicate this autonomy–dependency binary, Feder Kittay proposes an ethics of inclusion model guided by four principles that informs her work on interdependency. First, all persons should be understood as ‘moving in and out of relationships of dependence through different life-stages and conditions of health and functioning’ (Ibid: 54), so people reliant on caregivers will not be maligned as exceptions. Relationships between vulnerable adults and care providers must be ‘cooperative, respectful, and attentive’ rather than ‘paternalistic’ (Ibid: 55). The moral sentiment of care (restricted to the private sphere) should be merged with the moral sentiment of justice (cultivated in the public domain) through a private–public dialogue to enable society to ‘support relations of dependency work that takes place in the more intimate settings’ (Ibid: 56). The virtues of acknowledged dependence must be recognized to confront the ‘fear and loathing of dependency’ that inform legal conceptions of care (Ibid: 57). To assess whether ITV, Trade or Amber entertain Feder Kittay’s ethics of inclusion, Wodack’s and Reisgi’s discourse historical approach to critical discourse analysis informs each textual analysis. This methodology ensures that contradictions are uncovered and ‘manipulative’ discursive practices are demystified (Reisigl and Wodak 2009: 88). Utilizing this linguistic analysis will determine whether texts perpetuate the importance of autonomy or challenge the autonomy–dependency binary that can underpin ethical perceptions of care.

ITV Tyne Tees – Northern Scene ITV’s Northern Scene was a magazine programme exclusively broadcast in the Tyne Tees area to discuss local sociopolitical issues. One episode, ‘You’re Only as Old as You Feel’ (ITV, 1979) – or ‘OAPs’, a shortened title penned by ITV staff on the film reel’s outer casing – addresses the socio-economic ramifications of an ageing population by enquiring how the elderly should be cared for and whose responsibility it is. The programme consistently labels older people as a passive

Assessing Changes to the Welfare State

175

subsection of society. ‘OAPs’ commences with the narrator stating that ‘there are currently 8 ½ million pensioners’, before asking, ‘What do we do for them and what do they do for themselves?’ This question informs viewers that pensioners are not a party to the debate. While the programme states it is ‘society who sees old people as a decrepit separate species’, it attempts to qualify this statement by claiming ‘only 5% of pensioners are institutionalized as an economic burden for the next’. The central contradiction of ‘OAPs’ is that while overtly attempting to distance itself from labelling pensioners as a lesser species, the programme fails to address older people directly and presents their potentially dependent existence as burdensome for others. ‘OAPs’ interviews a number of pensioners living in North Eastern communities. Instead of focusing the discussion on how to best care for older people in relation to their individual needs, the programme champions autonomy. First, viewers are introduced to eighty-six-year-old Dorothy who bakes cakes in her kitchen while discussing her tutoring work. The interviewer asks, ‘There must be times that you feel lonely?’ The underlying argumentation strategy infers that loneliness is an inherent feeling that pensioners must overcome. Elizabeth agrees to experiencing brief spells of loneliness that she quells through writing poetry and cooking instead of using the meals on wheels service. In contrast to Dorothy, seventy-four-year-old Elizabeth feels isolated from her local town centre Rothbury, which is six miles away and to her feels ‘the other side of the world’. Elizabeth is asked, ‘What do you do to forget you’re lonely?’ Rather than asking if there are times she feels lonely the argumentation strategy equates Elizabeth’s loneliness with her inactivity. Elizabeth is asked, ‘How worried are you if you’re taken ill?’ The questions enquire into the extent of her worries rather than asking whether she worries in general. Being dependent on services is presented as an isolating existence that must be avoided in comparison to Dorothy who viewers must aspire towards. The programme concludes asking, ‘Councillors, young people, what are they prepared to do? Join us in The Power of the Pensioners.’ This following studio debate is centred on what the community will do for pensioners without asking pensioners directly what they need. Both programmes avoid a responsive twoway dialogue expected from a mode of care to provide an outcome that satisfies the cared for. The Hippocratic address of ‘OAPs’ is particularly evident given that the pensioners are referred to by their first name only compared to the experts who are provided their full name and title, for example, Isabella Reid of Age Concern. Given this clear distinction between the professionals and the subjects

176

Discourses of Care

of the documentary, it is clear both programmes make judgements on behalf of those in receipt of care and protects them from the decision-making process that ultimately propagates an autonomy–dependency binary.

Farewell to the Welfare State The Hippocratic mode of address regularly adopted by Northern Scene contrasts sharply with Trade Films productions. Trade’s documentary Farewell to the Welfare State (Channel 4, 1985) is an intriguing point of comparison. The broadcast opens with the camera slowly zooming into an old man’s face while a narrator states, This man was born in the last years of Queen Victoria’s reign. Coming from a working class family in the North East of England, there was a one in ten chance he would die in his first year. If he survived he might expect to reach fifty, but if he became too old or sick to work six days a week, all he could look forward to was the workhouse. … On his fiftieth birthday, he could celebrate the arrival of a free national health service, part of a comprehensive programme of social reform that came to be known as the welfare state. … He was eighty when a prime minister was elected preaching the values of a Victorian society.

As the camera focuses on the old man’s face we hear a baby crying for two seconds before a cut reveals a close-up of the newly born baby. Then a cut to Margaret Thatcher sees her announcing, One of the easiest things in the world is to succumb to the temptation of believing that the state – that kind of imaginary mother figure of our age – will be able to provide for all to protect us from all harsh reality, and to shoulder our burdens. But the mother figure can so easily end up not succouring but suffocating.

While this opening could be accused of pigeonholing the unnamed pensioner for not permitting him to speak, the programme actually advocates Feder Kittay’s ethics of inclusion. The documentary recognizes that one lives through various episodes of dependency. Usually milestones such as the ages twenty-one, thirty, forty and fifty are celebrated in terms of reaching the next stage of independence. Here, however, such milestones are presented alongside significant social reforms reminding viewers that improvements to the welfare state have enabled people to live longer lives. The startling cut to a baby crying is recognition that life begins and ends with heightened ‘relationships of dependence’ (Feder Kittay

Assessing Changes to the Welfare State

177

2011: 54). This is an ideological departure from ITV’s ‘OAPs’ that reprimands dependency as a burden for others. Instead, juxtaposing Thatcher’s speech with dependency reveals medical understandings of autonomy are being usurped by neoliberal notions of autonomy where ‘dependency is […] the sign of abjection’ (Dave 2016: 13). Furthermore, experts interviewed in the documentary directly address their audience using a different mode of address from ITV. Viewers are informed, ‘We need to ask ourselves what type of welfare state do we want to see produced.’ Directly addressing viewers and asking their opinion as part of an ‘honest’, ‘open’ and responsive dialogue abides by the BMA’s definition of care where patients have the right to reach their own conclusions (Brannan 2012: 7). Similarly, the documentary complies with the BMA’s understanding of care for disseminating complex information to its audience in ‘a way that they can understand’ and offering solutions with varying outcomes (Brannan 2012: 7). A worker from the Department of Health and Social Security (DHSS) headquarters in Newcastle explains the state pension scheme is ‘the cheapest to administer’ because only 1 per cent of costs are spent on administration, compared to the 18.5 per cent of private pension schemes. She claims, ‘It’s a nonsense to say we can’t afford a state pension.’ Also, in line with medical understandings of care, Farewell to the Welfare State presents information in ‘a fair and well informed way’ so viewers can ‘make the decisions that best suit them’ to lead the quality of life and type of society they want (Brannan 2012:22). Politicians from different parties are quoted in equal measure by a dispassionate narrator to provide balance and locate points of agreement across the political spectrum. These range from Edward Heath’s claim that ‘the basis of early capitalism was … the prosperity of the few depended on the poverty of many’ to William Gladstone’s view that ‘if the government takes into its hands that which the man ought to do for himself, it will inflict upon him greater mischiefs than all the benefits he will have received’. While this mode of address is synonymous with a contemporary BMA approved mode of care, the documentary simultaneously challenges the underlying ethics of care. A central argument repeatedly made is identical to the third principle of Feder Kittay’s ethics of inclusion – that public policy needs to understand the subjugated nature of private care work. In Farewell to the Welfare State a woman dependent on benefits explains that at a recent Labour Party conference, ‘workers, university researchers […] they all got up and made speeches about what was good for us; but we weren’t actually allowed to speak’.

178

Discourses of Care

Ultimately, Farewell to the Welfare State challenges an ethics of care and advocates an ethics of inclusion by repeatedly drawing attention to dependencies experienced through a lifetime while lobbying for a public policy informed by recipients of care. In comparison ITV’s ‘OAPs’ redraws oppositions between the independent and the dependent by dogmatically stating what the problem is, what needs to be done and enquiring how much you as a viewer are willing to contribute to their proposed solution. Instead, Trade asks viewers directly what ethical system ‘we’ want to be constructed.

Shields Stories In contrast, Amber’s Shields Stories (1988) is a series of ten-minute dramas designed to remove the stigma of those dependent on the DHSS, now the Department for Work and Pensions (DWP). Highlighting a variety of social issues within a soap format, Shields Stories was intended to be screened in public spaces such as doctors’ waiting rooms, council offices and housing departments. Over ten episodes, the series follows the fortunes of seven interlinked characters as they make sense of their lives in a community affected by cuts to health, education and social services. In each episode somebody from a council or community organization offers a solution to the fictional character’s problem. In ‘Truant’ Educational Welfare Officer Pauline Moriarty, playing herself, offers to help struggling mother Betty (Amber Styles) pay her son’s dinner money. In ‘Debt’ real members of the Meadow Well Credit Union inform Betty they can alleviate her reliance on loan sharks. Although solutions to the characters’ complex predicaments appear simplistic, Shields Stories is unique because it is designed to be watched by unsuspecting members of the public in community settings. The series operates as a mode of care because it attempts to intervene in the lives of North Shields residents. Having real local authority service staff consistently explain the rights of, and the services available to, local residents in a direct and matter-of-fact manner ensures the advice delivered stands out in stark contrast to the naturalistic dialogue of the characters played by trained actors. The eponymously titled ‘Florrie’ focuses on the retired pensioner’s (Jean Southern) inability to afford a working cooker. Florrie is reluctant to apply for a Social Fund grant from the DHSS because she considers it ‘begging’ despite her friend’s plea that it is her ‘right’. Although this episode does not feature real DHSS staff or highlight the issues associated

Assessing Changes to the Welfare State

179

with the Social Fund (i.e. most applicants were given loans as opposed to grants, pushing many into further debt), it attempts to remove the stigma likely to be felt by potential DHSS claimants and recasts claims as entitlements. Therefore, Shields Stories can be understood as a mode of care because ‘how to support your service users in the exercise of their rights’ is traditionally an integral aspect of health and social care (Nolan 2003: 2). In line with Feder Kittay’s primary ethics of inclusion principle, Shields Stories depicts a series of characters experiencing life through a number of dependencies. Housewife Betty relies on her older dinner lady friend Lil (Norma Day) for money; many are financially dependent on pub landlord Bert (Art Davis); and Bert’s son Derek (Robson Green) drives Betty’s intoxicated husband Ray (Ray Stubbs) home. There is consistent recognition that dependency represents an intrinsic aspect of our social bond, as well as being required formally in times of need. The series does not challenge an ethics of care as overtly as Trade’s documentaries because the purpose of each episode is to educate people in local authority services. Amber member Pat Murphy (2016) felt people did not necessarily know what local authorities did and so Shields Stores was ‘our attempt to create something where people would watch a documentary embedded in a drama that dealt with issues connected to local authorities’ ranging from ‘housing’ to ‘childcare’, and ‘literacy’ (Murphy 2016). Like Feder Kittay’s ethics of inclusion, the resulting dramas confront the ‘fear and loathing’ associated with dependency that were also infiltrating political and medical discourse (Feder Kittay 2011:57).

The Privatisation Tapes Shields Stories arose from Amber’s previous project The Privatisation Tapes (1986) – a series of short films screened at union meetings to examine the prospects for local authority workers whose jobs were threatened by privatization. ‘The Public Good’ tape highlights the administrative disjuncture that exists between the management that run hospitals and the medical staff who serve them. A union rep disseminates confidential documents informing viewers that the district health authority believes making the general hospital efficient will involve making sixty people redundant while providing remaining staff with 15 per cent cuts in pay for their increased workloads. The contracts being put out to tender are translated as if the viewer is a patient being given specialized information

180

Discourses of Care

‘in a way that they can understand’ so that they can be fully informed of the facts surrounding this procedure before formulating a decision (Brannan 2012: 7). The ideological message here is that hospital management treat their staff in a Hippocratic manner as workers are shielded from decision-making and are not given the full facts compared to how medical professionals are expected to treat patients. Additionally, in ‘The Darlington Tape’ Electrical Electronic Telecommunications and Plumbing Union (EETPU) shop steward Vic Spensley explains how his members have formed a committee alongside councillors to secure an increase in pay and no job losses. He instructs and advises audiences how to emulate this working practice. So, having conducted a discourse historical approach mode of critical discourse analysis, which uncovers contradictions in texts to demystify manipulative discursive practices, I argue that the work of Trade Films and Amber Films operated as modes of care. Each production disseminates information in a way that challenges mainstream political discourse. More importantly, though, the texts encourage viewers to formulate opinions regarding issues that directly implicate the health and well-being of themselves and their communities. Compared to ITV regional programming, Workshop productions present viewers with differing arguments, interpretations and solutions in a similar way to how doctors and nurses are instructed to relay options to patients. Ideologically, the texts are aligned with Feder Kittay’s ethics of inclusion because life is depicted as a process of moving in and out of dependent relationships. Viewers are also instructed how to campaign for a democratic welfare system where public policy is informed by the cared for. The production attempts to empower viewers by demonstrating that anyone reliant on care or working in health and social care possess a valued outlook that can make a difference. The type of autonomy being fostered here is one that brings people together through a renewed solidarity project. This is anathema to neoliberal ideology that conceives of citizens as individuals ‘whose most pressing obligation to society is to empower her or himself ’ as part of a ‘political climate that demands selfenterprise’ and non-reliance (Ouellette and Hay 2008: 3, 4).

Behind the scenes In order to deduce whether Trade and Amber content can be understood as modes of care, each company’s differing employment practices will be examined.

Assessing Changes to the Welfare State

181

Accessing this material via Amber’s archives and the Tyne and Wear Archives will determine to what extent each company understands their work as a form of care. Amber’s working practices were uniquely devised compared to the traditional structures of creative industry labour. First, Amber abided by what cultural sociologists Vail and Hollands (2013) have termed ‘the norm of collective scrutiny’. Whereas the industrial model of film-making keeps production personnel resolutely focused on matters of their own craft and expertise, Amber’s most oft-repeated aphorism was ‘the clapper loader can have as many good ideas as the director’ (Vail and Hollands 2013: 359). In practice all creative choices (plot lines, character development, dialogue, editing, etc.) ‘faced collective scrutiny from every member of the collective, no matter their craft position’ (Ibid). Furthermore, a ‘norm of empowerment’ ensured it was the social right of every member to participate creatively in artistic projects (Vail and Hollands 2013: 361). Amber operated a wage pooling system that meant any money received for commercial work (including advertisements) was distributed equally among the staff. Being able to rely on fellow members’ paid work meant individuals had ‘less anxiety regarding the volatility of their own job prospects’ (Vail and Hollands 2012: 341). Amber’s system of collective labour meant all members were trained in the administrative running of their photography gallery, cinema and offices. In essence these guiding principles attest to Amber’s social role as a provider of care. Amber’s idiosyncratic approach to labour fostered dependency between its members so that each worker could diversify their skill set and achieve their full creative potential. Amber’s working practices correspond with the ideology of Shields Stories and The Privatisation Tapes that advocate the virtues of acknowledged dependence between members of a union, workplace and community. The fundamental principles underlying Feder Kittay’s ethics of inclusion are inadvertently formalized within a contract of employment. Trade’s approach was marginally different. Amid Trade’s 1986/7 funding crisis they reassessed their priorities. Initially Trade’s Northern Newsreel service existed as ‘a regular newsreel’, ‘produced under the terms of the ACTT Workshop agreement’, ‘distributed exclusively on videocassette’ and was ‘financed primarily or exclusively by the trade union movement’ (Spence 1987b: unpaginated). Soon experience proved ‘that the criteria are incompatible’ because content for a broad trade union audience was of ‘limited use to a trade union education officer’ concerned with ‘the interests of specific members’ (Ibid). After

182

Discourses of Care

discovering tapes were often screened while divisional executive meetings were gathering or dispersing, Trade abandons their commitment to distributing material exclusively on cassette in favour of ‘established channels of mass audiovisual communication’ (Ibid). This solution permits Trade to produce Northern Newsreel while forgoing their obligation to be reliant on trade union finances. Trade prioritizes ‘editorial independence’ fearing that financial ‘dependency’ (Spence 1987a: unpaginated) on unions could ‘control’ their ‘independent’ voice (Spence 1985: unpaginated). Prioritizing this independent agency contrasts with Amber, whose work was dependent on close collaboration between their staff and the communities of Byker and North Shields whom they worked closely with during periods of residency. As Murphy (2016) states, ‘Amber is all about being embedded in communities and everything we make comes from that embedment … you’re listening to people. You listen to what’s happening. You believe in the wisdom of people.’ Although Trade was reluctant to be as dependent on others, it can still be understood as intending to provide a form of care for its viewers. Correspondences sent from Trade to their trade union clients repeatedly stress how an open and responsive dialogue with their subscribers is of fundamental importance. Their portfolio entitled Getting Our Message Across concludes stating, ‘The labour movement must above all communicate’ (Trade Films n.d.: unpaginated). Concluding on this note suggests that effective communication with their trade union subscribers is key to maintaining a service that is ‘independent of the major corporations’ and can ‘express the views of people within the region’ (Spence n.d.: unpaginated) albeit with an independent editorial eye. What can be discerned from this archival research is that Amber’s role as a caring organization is reaffirmed by their interdependent approach to labour. Although Trade is unwilling to sacrifice its editorial autonomy, content is still provided to foster discussion and educate its viewers. When distributing educational packages Trade instructs their subscribers that programmes ‘must be presented together with suitable written backup material or at least with a well briefed tutor’ (Spence 1987c: unpaginated). Trade documents emphasize repeatedly the importance of generating discussion and of presenting their material through the appropriate context. As such their AGM is launched to ensure their Northern Newsreel can ‘respond to and reflect the interests of the broad labour movement’ like a medical professional maintaining an open and responsive dialogue with clients in their care (Spence 1985: unpaginated).

Assessing Changes to the Welfare State

183

Impact In order for a mode of care to occur Feder Kittay argues a carer must first ‘engage in actions’ because ‘the intention to care [alone] cannot be adequate as a form of care’ (Feder Kittay 2014: 35). This action must intervene in somebody’s circumstances and be ‘experienced as an act of care by its object’ (Ibid: 36). This intervention must be acknowledged by the ‘cared for’ who chooses to ‘take up the action as care’ (Ibid: 35). So far, this chapter has determined how the caring discourse utilized by Amber and Trade – compared to mainstream regional broadcasts – were distributed in particular environments to educate people in their rights as a way of improving their circumstances. Producing this content in close collaboration with specific communities to cultivate a mode of communication that improves viewers’ circumstances can be understood as a caring action. Proving Trade and Amber intervened in individuals’ circumstances is slightly more difficult. Despite the intention of Shields Stories, its broadcast was blocked by North Tyneside Council. Murphy (2016) ascribes this censorship to Conservative councillors who felt the dramas unfairly advertised the achievements of Labour Party initiatives. Murphy also believes there was a ‘lack of trust’ from the Council, which was reluctant to grant Amber the editorial freedom to produce a series of programmes on a monthly basis as a ‘visual newsletter’ that encouraged ‘people to have their say’ (Murphy 2016). The Council felt that the broadcasts highlighted problematic elements of the area that could damage its wider reputation. However, there is some evidence to suggest that The Privatisation Tapes did intervene in people’s circumstances. Although the tapes were unable to stem the sweeping tide of privatization from encompassing local authority services, they can still be considered as interventionist. Murphy (2016) recalls the tapes empowered people to voice their opinions and become active in debates; ‘they worked as a trigger because people recognized places and issues that were their life and so engaged in debates afterwards’. Following union meeting screenings ‘people felt they had something to say’ (Murphy 2016). For Trade this intervention is slightly more difficult to prove. Rather than tackling localized predicaments with a very specific audience in mind, their content was aimed towards a general viewership. Trade’s Northern Newsreel was not exclusive to unions but was distributed to libraries and training centres as far afield as Sheffield, Leicester, Merseyside and London. As Bob Davis and Derek Stubbs (2017) of Trade recall, they saw their role as ‘contributing to a larger

184

Discourses of Care

debate’ rather than actively attempting to ‘intervene in local authority service delivery’. Nevertheless, there is some indication that people recognized Trade’s work as a form of care. Some unedited rushes from the second Northern Newsreel bulletin feature Northern Regional Secretary of the TUC (Trades Union Congress) Tom Burlison opening the Trades Union Council in the centre of Newcastle. Burlison’s speech cites ‘Trade films’ as a company ‘prepared to put themselves upfront as a caring organisation […] to help the people in this region’. Similarly, Trade’s research discovers that people felt The Miners’ Campaign Tapes were ‘significant in the growth of a national womens [sic] support network’ (Trade films 1984: 2). Beyond personal testimony and anecdotal evidence, though, there are no official records to suggest that local social services acknowledged Amber and Trade’s work as aiding vulnerable people in their care. Instead Trade’s significance is recognized within an economic development context. That is, the Tyne and Wear Economic Development Committee contributed to the employment costs of four Trade staff members; The Shipyard Tapes (1984) was funded by Tyne and Wear Council’s ‘Save our Shipyards’ campaign; and Gateshead MBC provided improvement grants to restore a derelict building on Bottle Bank for Trade’s headquarters and archive. Tyne and Wear Council’s social service records reveal that Trade’s and Amber’s criticisms of district health authorities, councils and local authorities – as an extension of national government in implementing welfare reform – are partially unjustified. Various bodies were resisting changes that they felt negatively affected vulnerable citizens within their community. For example, a Tyne and Wear Council Social Services Committee meeting on the Unicorn House DHSS office closure concluded that ‘the leader of the council [will] write to the Secretary of State in the strongest possible terms’ and ‘section 137 of the 1972 Local Government Act be utilized to prevent hardship occurring’ to people facing delayed DHSS payments (Social Services Committee 1986: 255). Here local government actively intervenes to improve the care and well-being of their residents. Similarly, Newcastle City Council’s Poverty, Debt and Welfare Rights Sub-committee is formed in the late 1980s to ‘review welfare rights and debt advice provisions in the city given increased indebtedness and growing poverty resulting from social security benefit cuts, unemployment, poll tax, and an economic recession’ (Poverty, Debt and Welfare Rights Subcommittee 1990a: 4). Given the Council’s budget crisis, they ask ‘serious questions’ of their traditional service model that is expected to do things ‘for’ people, rather than

Assessing Changes to the Welfare State

185

‘for themselves’ and ‘encourages dependency’ (Poverty, Debt and Welfare Rights Subcommittee 1990b: 14). While the Subcommittee ‘are in no way opposed to the principle of advice on demand for all’, it is no longer considered viable due to ‘major resource implications’ (Poverty, Debt and Welfare Rights Subcommittee 1990b: 14). Social care services that have questioned national policy directives are now forced into advocating autonomy and independency in correspondence with central government following depleted resources.

Swingbridge Media To find definitive proof that regional productions intervened in individuals’ circumstances – as modes of care – community media access centres operating outside the Workshop movement require further analysis. Founded by Hugh Kelly in 1979, Swingbridge Media is a centre that chronicled the social histories of Gateshead and Tyneside. Films such as Unemployment in Scotswood (1980) and Happy Families (1988) depict people enduring poverty amid benefit changes as they candidly discuss their perspective and experiences. Such productions followed the tradition of community arts instead of Grierson’s political filmmaking as adopted by Trade given its 1985 Grierson Award for The Miners’ Campaign Tapes (1984). Swingbridge’s aim was to produce texts through pedagogies of participation as theorized by Friere (Lloyd 1972) and Giroux (1992) who advocate developing ‘critical consciousness through reflection and action’ to produce ‘radical social change’ (Lloyd 1972: 3). Kelly (2017) believes this theoretical outlook made Swingbridge ‘unique’ within the collection of alternative community-based media discourses operating in 1980s Tyneside. In line with this pedagogic practice, Swingbridge fostered interdependency between themselves and their filmed subjects by training participants to use media equipment and providing them with the final creative say. Thus Swingbridge adhered to Feder Kittay’s ethics of inclusion differently from Trade and Amber who preserved their creative autonomy. Like Amber and Trade, though, Swingbridge was equally invested in ‘exposing power relationships’ where autonomy and dependency were concerned (Kelly and Jeffrey 2016: 77). But vowing to challenge the local state’s tendency to ‘reproduce inequalities’ within policies ‘designed to alleviate the effects of poverty’ can be an unfair summation of local authority work as previously discussed (Kelly and Jeffrey 2016: 73). Even so, providing residents of impoverished communities with a certain degree of

186

Discourses of Care

creative agency in productions is where the caregiving dimension to their work can be located. This differs from Amber and Trade where the caring element to their work can be ascribed largely to their texts’ educational mode of address designed to inform viewers of their rights.

Conclusion In conclusion, regionally produced ITV Tyne Tees content amid 1980s welfare reform utilized a Hippocratic address to encourage viewers to lead autonomous lives and avoid dependency on social care services. In comparison, Trade and Amber outputs can be understood as modes of care because they disseminate complex information for their audience, offering solutions while educating their viewers in the specific entitlements and support services available to them. Concurrently, each production contests binary understandings of autonomy and dependency implicit within social care relationships. Each text depicts life as a process where people move in and out of dependencies, where relationships between vulnerable adults and care providers must be more cooperative rather than paternalistic, where public policy must be informed by the day-to-day experience of the cared for and where the virtues of dependence must be recognized. This ideology – synonymous with Feder Kittay’s ethics of inclusion – is reaffirmed by Amber’s employment practices that foster dependency within the workplace and between their production unit and surrounding community of temporary residence. Something Swingbridge can be seen to develop further by involving filmed subjects in the processes of film-making. Even Trade who are keen to prevent trade unions compromising their editorial autonomy maintain a responsive dialogue between themselves and their clients while educating viewers in their care provision rights. Beyond personal testimony, however, there is little evidence to suggest Amber’s, Trade’s, or Swingbridge’s content was widely understood as modes of care by social care services or those in receipt of care. Nonetheless, their content was clearly challenging the dominant sociopolitical narrative that dependency on the welfare state can be anathema to a productive economy. This neoliberal view is perpetuated by mainstream regional media and the central government, and is eventually attained by local authorities who have to utilize their stretched resources productively. In recent years, health and social care qualifications have also begun to adopt this view. The 2003 edition of Nolan’s Care: NVQ level 2

Assessing Changes to the Welfare State

187

begins with a core unit entitled ‘Foster People’s Equality, Diversity, and Rights’ (Nolan 2003: 1). Here students are instructed to learn ‘the rights your service users have’ and ‘how to support your service users in the exercise of their rights’ in terms of ‘basic human rights’ and ‘rights provided by law’ (Ibid: 2). However, in the 2005 edition the ‘renewed health and social care’ qualification omits this rights section from its series of core units given ‘new legislation guidelines’ (Nolan 2005: 1). Overall, it is vital that social care continues to be understood as a fundamental human right. This understanding is becoming increasingly deprioritized by the educational sector and social care services in light of diminishing resources and overworked staff. It is imperative that grassroots media continues to educate viewers and hold the implementation of national government policy to account on behalf of the specific social needs of communities wherever possible. The academic framework established by this article can determine the extent to which this intervention is achieved. My method assesses the ideological implications of the content, production practices and impact provided by different types of regional media outlets through a discourse historical approach of critical discourse analysis aligned to an established tradition of journalism scholarship. Having this ideological analysis guided by Feder Kittay’s philosophically astute ‘ethics of inclusion’ from the medical humanities discipline can deduce at each stage of production and then reception whether the text in question is indeed a mode of care. By applying this new methodological framework to all forms of mainstream and grassroots regional media which exist and have existed throughout different localities within the country and beyond, academia can start to develop a more accurate understanding of precisely how the welfare state has developed along geographical lines. This process of geographical mapping that has been instigated here can begin to take into account regional nuance rather than brushing over the precise differences existing between communities that are often overlooked by isolated regional histories and nationally focused Westminster-centric histories of the welfare state.

Acknowledgements David Parsons, Graham Relton (North East Film Archive), Bob Davis, Derek Stubbs (Trade Films), Pat Murphy, Graeme Rigby (Amber), Hugh Kelly (Swingbridge Media) and Professor Natasha Vall (Teesside University).

188

Discourses of Care

Notes 1 The 1988 Griffiths Report, full title ‘Community Care: Agenda for Action. A Report to the Secretary of State for Social Services’ (HMSO 1988) was commissioned in 1983 and was fairly well received by groups such as Carers UK (then Carers’ National Association), for recommending direct support for carers. 2 See also Susan Sontag’s Illness as Metaphor that refers to concealments of cancer diagnoses from patients for their ‘own good’ in the early twentieth century.

References Aguirre, M. S. and C. Iffland, eds (2014), Care Professions and Globalization: Theoretical and Practical Perspectives, Basingstoke: Palgrave Macmillan. Brannan, S. (2012), Medical Ethics Today: The BMA’s Handbook of Ethics and Law, 3rd edn, Oxford: Wiley-Blackwell. Collingwood, R. G. (1958), The Principles of Art, Oxford: Oxford University Press. Dave, P. (2016), ‘Contemporary British social realist film: Bypass, obscure forces and ontological unrest’, Paper Presented to Social Realism Seminar, Teesside University, 4 February 2016. Davis, B. (2014), ‘Thirty years on: A footnote on the history of the regional film archive’, North East History, 14: 29–42. Davis, B. and D. Stubbs (2017), Interview with the author, 29 September. Doyle, B. M. (2007), ‘Competition and cooperation in hospital provision in Middlesbrough, 1918–48’, Medical History, 51 (3): 337–56. Farewell to the Welfare State (1985), [TV Programme] Channel 4, 3 February, 23.00. Feder Kittay, E. (2011), ‘The ethics of care, dependence, and disability’, Ratio Juris, 24 (1): 49–58. Feder Kittay, E. (2014), ‘The completion of care – with implications for a duty to receive care graciously’, in M. S. Aguirre and C. Iffland (eds), Care Professions and Globalization: Theoretical and Practical Perspectives, 33–42, Basingstoke: Palgrave Macmillan. Fraser, D. (2009), The Evolution of the British Welfare State, 4th edn, Basingstoke: Palgrave Macmillan. Giroux, H. A. (1992), Border Crossings: Cultural Workers and the Politics of Education, London: Routledge. Glennerster, H. (2007), British Social Policy: 1945 to the Present, 3rd edn, Oxford: Blackwell. Happy Families (1988), [Film], UK: Swingbridge Media. Kelly, H. (2017), Interview with the author, 6 November.

Assessing Changes to the Welfare State

189

Kelly, H. and G. Jeffrey (2016), ‘Community media and cultural politics on Tyneside’, in The People’s Knowledge Editorial Collective (ed), People’s Knowledge and Participatory Action Research: Escaping the White-Walled Labyrinth, 73–82, Rugby: Practical Action Publishing. Lloyd, A. S. (1972), ‘Freire, conscientization and adult education’, Adult Education Quarterly, 23 (1): 3–20. Lowe, R. (2005), The Welfare State in Britain since 1945, 3rd edn, Basingstoke: Palgrave Macmillan. Murphy, P. (2016), Interview with the author, 27 July. Newcastle City Council Social Services Poverty Debt and Welfare Rights Advisory Sub-Committee (1990a), Report by Welfare Rights Staff, Newcastle: Newcastle City Council, (T/125). Newcastle City Council Social Services Poverty Debt and Welfare Rights Advisory SubCommittee (1990b), Conclusions of the Sub-Committee, Newcastle: Newcastle City Council, (T/132). Nolan, Y. (2003), Care: NVQ Level 2 Student Handbook, 2nd edn, Oxford: Heinemann Educational. Nolan, Y. (2005), Health & Social Care: S/NVQ Level 2, 3rd edn, Oxford: Heinemann. Northern Newsreel Bulletin 2: Tape 2 (1986), [Film], UK: Trade Films. Northern Scene: ‘You’re Only as Old as You Feel: OAPs’ (1979), [TV programme] ITV Tyne Tees, 2 February. North Tyneside Council Social Services Committee (1986), ‘Item 254. D.H.S.S. office closure- unicorn house – resultant public hardship’, Proceedings of the Council, 29 May 1986. Ouellette, L. and J. Hay (2008), Better Living through Reality TV: Television and PostWelfare Citizenship, Oxford: Wiley-Blackwell. Percival, T. ([1849] 2016), Medical Ethics, Victoria: Leopold Classic Library. Reisigl, M. and R. Wodak (2009), ‘The discourse-historical approach (DHA)’, in R Wodak and M Meyer (eds), Methods for Critical Discourse Analysis, 87–121, 2nd edn, London: Sage. Shields Stories (1988), [Film], UK: Amber Current Affairs Unit. Shipyard Tapes (1984), [Film], UK: Trade Films. Sontag, S. ([1978] 2002), Illness as Metaphor & AIDS and Its Metaphors, London: Penguin. Spence, M. (1985), Northern Newsreel: Advisory Group Outline Mk. 1, Tyne and Wear Archives 4383/10 (D6348). Spence, M. (1987a), Northern Newsreel: Notes on Future Strategy and Funding, Tyne and Wear Archives 4383/10 (D6348). Spence, M. (1987b), Northern Newsreel and the Labour Movement, Tyne and Wear Archives 4383/10 (D6348).

190

Discourses of Care

Spence, M. (1987c), Northern Newsreel: Educational Packages, Tyne and Wear Archives 4383/10 (D6348). Spence, Martin (n.d.), Lines for Counter Attack Trade and Political Bias, Tyne and Wear Archives 4383/10 (D6348). The Miners’ Campaign Tapes (1984), [Film], UK: Trade Films. The Privatisation Tapes (1986), [Film], UK: Amber Current Affairs Unit. Thomas, P. (2011), ‘The British workshop movement and Amber film’, Studies in European Cinema, 8 (3): 195–209. Thompson, I. E. (2006), Nursing Ethics, 5th edn, Edinburgh: Churchill Livingstone Elsevier. Unemployment in Scotswood (1980), [Film], UK: Swingbridge Media. Trade Films (n.d.), Getting Our Message Across: The Northern Newsreel Portfolio, Tyne and Wear Archives 4384/10 (D6348). Trade Films (1984), Miners Campaign Tapes Research Project: Final Summary Report, North East Film Archive. Vail, J. and R. Hollands (2012), ‘Cultural work and transformative arts’, Journal of Cultural Economy, 5 (3): 337–53. Vail, J. and R. Hollands, (2013), ‘Creative democracy and the arts: The participatory democracy of the amber collective’, Cultural Sociology, 7 (3): 352–67. Webster, C. (2002), Nation Health Service: A Political History, Oxford: Oxford University Publishing.

Section Four

Bad care

192 

10

Failings in the duty of care Mediated discourses on children at risk Maggie Sweeney

Ideas of contemporary childhood According to some scholars, contemporary society is marked by a universal surge in parental and cultural anxieties about matters of child welfare and safety (Backett-Milburn and Harden, 2004). Indeed, as F. Furedi has observed, the invention of ‘the concept of “children at risk”’ (2001: 25) reinforces the sense that childhood has become defined by an ever-increasing possibility of exposure to a variety of dangers. As a result, the hegemonic rhetoric of contemporary childhood politics has become suffused by discourses that emphasize notions of vulnerability and risk, so much so that such fears have become ‘amplified to an excruciating pitch’ (Brooks 2006: 16). For some, this intensification of perceived risks can be attributed to the increasing encroachment of mass media in the delivery of news and information to the wider public (Bourke 2005), with Burgess observing that the media ‘play an active role in framing risk controversies’ (2010: 59). Alongside discourses pertaining to children at risk, however, mediated narratives about perceived failings in the duty of care by those working within the field of child protection and social care services have also become an increasingly dominant narrative within the politics of childhood. This is not a purely contemporary issue: in 1973 Maria Colwell’s death at the hands of her stepfather precipitated a shift in public and political attitudes towards issues of child welfare. It also marked a turning point in terms of the media’s response to incidents of child abuse in that this particular event captured an unprecedented level of ‘hostile media coverage’ (Warner 2014: 1639). Much of the media hostility following Maria Colwell’s death was directed towards the apparent shortcomings of East Sussex child protection services, with the social

194

Discourses of Care

worker who managed the case being subjected to extensive ‘media criticism’ (Lonne and Parton 2014: 6). More than forty-five years on from Maria Colwell’s death, the level of media interest in high-profile episodes of child neglect has continued unabated. Media reporting remains focused on the failings of individual social workers and professionals – with Victoria Climbié (2000),1 ‘Baby P’ (2007), Khyra Ishaq (2008), Daniel Pelka (2012), Ellie Butler (2013) and Liam Fee (2014), to name some of the more well-known cases. As I. Butler and M. Drakeford observe, ‘the ghost of each successive scandal haunts the next’ in child abuse cases (2011: 194) and the discourses that permeate such stories emphasize the continuing risks, dangers and vulnerability of young children. Focusing on the reporting of child neglect and abuse of Ellie Butler (d. 2013) and Liam Fee (d. 2014), this chapter will examine the ways ‘children at risk’ and ‘failings in the duty of care’ have become the dominant narrative tropes within media reporting of ‘bad care’. I argue that repeated references to ‘bad social work’ and ‘bad parenting’ mutually reinforce one another in news reporting on child neglect and abuse.

Childhood politics: Vulnerability, risk and well-being In Centuries of Childhood, historian Philippe Ariès (1962) posited that the concept of childhood is itself a social construction. He presents childhood as having cultural and temporal specificity and allows for the recognition that childhood is open to adaptation and re-invention at key historical junctures. By the advent of the eighteenth century, what we recognize as modern-day childhood entered the public sphere.2 There emerged a category of childhood whose subject and material position were distinctly demarcated from the sphere of adulthood. H. Hendricks observes that by the 1840s [a] new construction of childhood was put together so that by the end of the period the wage-earning child was no longer considered to be the norm. Instead, childhood was now seen as constituting a separate and distinct set of characteristics requiring protection and fostering through school education. (2007: 39)

This emerging recognition of the distinctive status of childhood was further evidenced with the advent of various legal, medical, social and political institutional forces at the turn of the twentieth century. As a result, ambiguous

Failings in the Duty of Care

195

vestiges surrounding the nature of childhood were gradually displaced and there emerged ‘a recognizably modern notion of childhood’ (James and Prout 2007: 35). Framed within this paradigm, ‘the new sacred child occupied a special and separate world, regulated by affection and education, not work or profit’ (Zelizer 1994: 209). A focus on the well-being and safeguarding of children was embedded within an idealized model of familial structures and the wider social fabric of the community, which sought to collectively provide an environment where children would be protected, nurtured and cared for until their entry into the realm of adulthood. While the principles of nurturing, safeguarding and well-being continue to govern the discourses that shape our understanding of how childhood should be experienced within the twenty-first century, highly publicized incidents of child mortality as a result of neglect and abuse challenge the consensus as to how childhood is actually being experienced. These crimes occurred in a period in which ‘issues of children’s personal safety and the risks and dangers they face in the course of their daily lives have become key social and parental concerns’ (Backett-Milburn and Harding 2004: 430). As a result, not only have media reports suggesting that social workers are perpetuating bad care promoted a sense of ‘exaggerated vulnerability’, but they have also contributed to the formation of discourses marked by ‘paranoid parenting’ and ‘child-panic’ (Furedi 2001; Brooks 2006). As L. Brooks (2006: 16) suggests, Concerns about the vulnerability of children have been traduced by an allpervading child-panic. Childhood has become the crucible into which is ground each and every adult anxiety about sex, consumerism, technology, safety […]. This is a time of child-panic.

Alongside this preoccupation with child welfare and the ‘exaggerated vulnerability’ of the child sits the concept of risk. As documented by Furedi the hegemonic forces that surround parental and cultural anxieties about child safety have resulted in a situation whereby [w]e are so scared about children taking risks that we have invented the concept of ‘children at risk’. It is a concept that warns parents that children are in constant danger [...]. From this perspective parents can never feel too much anxiety for the welfare of their children. (2001: 25)

Furedi suggests that this nurturing of a culture that emphasizes the vulnerability and possible risks associated with issues of child safety – as opposed to one that

196

Discourses of Care

highlights childhood as a period of freedom and playful experimentation – has been conveniently attributed to the media. In turn, the media have been presented as producers of wider societal ills: ‘it is all the fault of the sensationalist media. Panics about children’s safety are interpreted as “media-led” and television is accused of making parents unnecessarily apprehensive’ (Furedi 2001: 11). For Furedi, however, this prevailing viewpoint is misplaced. Instead, he suggests the central crux of the crisis surrounding the well-being of children coupled with the complexities associated with contemporary parenting can be directly related to what he describes as ‘the breakdown of adult solidarity’: Adult solidarity is one of those unspoken facts of life that people used to take for granted … throughout the world adults assume a modicum of public responsibility for the welfare of children even if they have no ties to them. (2001: 11–12)

Arguably, such a standpoint belongs to a bygone age and presents an idealized version of civic culture, whereby notions of adult solidarity were characterized by extended familial ties, intergenerational support and close-knit communities who monitored children’s activities and behaviours from the sidelines. In the contemporary period, however, many of these social structures and intimate relationships have become displaced and no longer reflect the reality of the day-to-day patterns of living for many parents and children. Within the context of British society, this is in part attributed to the breakdown of the post-war settlement and value consensus, which by the late 1990s had been eroded. With extended familial networks becoming geographically dispersed owing to shifting patterns in the workplace (e.g. the migration of individuals from areas of high unemployment to those that provided greater opportunities for work, together with the rise in single-parent households), the day-to-day practice of ‘adult solidarity’ gradually became unravelled from the central fabric of society. Arguably, this breakdown of adult solidarity was further exacerbated by the waning influence of institutions such as organized religion, together with reductions in local police presence and officers who would previously have informally monitored the activities and safety of children within their local communities. One only has to reflect upon the media’s coverage of the murder of the two-year-old toddler James Bulger in Bootle in 1993, to trace the rhetoric of risk. Not only did Bulger’s death have a significant and lasting imprint on parents’ perceptions of potential risks to their offspring (Furedi 2001), but media reports also highlighted the reluctance of bystanders to

Failings in the Duty of Care

197

intercede in the situation. Politicians, the media and ordinary citizens became preoccupied with the apparent ‘demise of childhood’, the ‘erosion of family life’ and ‘degenerate communities’ (Scraton 1997: vii), indicating that UK society was apparently gripped by a sense of moral collapse (Green 2008). J. Bourke argues that, ‘with the vast expansion in the mass media during the twentieth century, dangers were publicised to an unprecedented degree, making them seem more boundless’ (2005: 350), and mediated constructs of ‘stranger-danger’ became deeply embedded within the sphere of child politics (Kitzinger 2004). However, these discourses also implied that those involved in the protection and care of children – either professionally or personally – were failing to do so. It comes as no surprise that by the late twentieth century notions of risk and threats to child well-being – real or imagined – had seeped their way into the cultural psyche. Unsurprisingly, issues relating to notions of vulnerability, risk and well-being are fraught within the context of twenty-first-century child politics. This is particularly the case when there appears to be a complete breakdown in adult solidarity, whereby the victims of neglect and abuse are failed by the very individuals – such as parents and child protection agencies – who have a duty of care towards safeguarding their welfare.

Childhood: Fictionalized discourses of failings in care In 2008, Barbara Baird coined the term ‘child fundamentalism’ to describe the discursive strategies which have come to permeate Western formations of child politics. As such, debates framing the concept of ‘childhood’ within the public sphere have come to be dominated by discourses that emphasize notions of carefree innocence and vulnerability, with the tacit acceptance that children require sustained nurturing and protection until the transition from childhood to adulthood is seamlessly achieved. Such discourses not only are evident within the context of day-to-day news output but are also mediated through fictionalized representations. The Slap (2011), an Australian production aired on BBC Four, and Kiri, a 2018 drama produced for Channel 4, focus on the complexities and sensitivities that surround the monitoring, supervision and care of young children. Adapted from the novel by Christos Tsiolkas (2008), The Slap centres on the repercussions resulting from a barbecue party where an adult guest (Harry) slaps a young

198

Discourses of Care

child (Hugo) across the face. As a consequence, Hugo’s parents make a formal complaint to the police, claiming Hugo was assaulted, and friends and family who witnessed the event are forced to take sides. When the case is finally brought to court, the parents, and in particular Hugo’s mother (Rosie), are portrayed as chaotic, hard drinking and irresponsible carers of their (undisciplined) child. Rosie’s credibility is further undermined by her working-class background – in contrast to Harry who, in spite of a history of domestic violence, is presented as the epitome of the successful, middle-class businessman, and is outwardly a well-respected member of the local community. The story ends with the charges against Harry being dropped, and with Hugo and his parents moving out of the area. Released seven years after The Slap, Kiri focuses on the difficulties that engulf a social worker Miriam (played by Sarah Lancashire), who has a history of being a maverick and unorthodox in her professional practice. When Kiri, a black child in Miriam’s care, disappears during an unsupervised visit to her biological grandparents, Kiri’s (white) foster parents, the media and the police, together with Miriam’s colleagues focus their anger and criticism on Miriam as the (ir)responsible party. The level of hostility levelled at Miriam intensifies when Kiri is found dead. Miriam is suspended and eventually fired from her job. In both of these television dramas, the discourses that frame these narratives shine a spotlight on the problematic nature of contemporary parenting, care and the supervision of young children – which are further complicated by issues of cultural difference (specifically, race and class). Together they challenge viewers to question who has the authority to monitor and discipline other peoples’ children – particularly if a child (as in the case of Hugo) appears to be on the receiving end of what could be perceived as ‘bad parenting’. At the same time, Kiri also invites us to reflect upon the pressures associated with working in the social care sector, and the way in which a well-intentioned decision can have catastrophic consequences for all those involved – particularly children. Combined, these dramatizations highlight what can happen when children experience bad care, whether at the hands of their primary carer, such as a parent or legal guardian, or as a result of failings within child protection services. Moreover, The Slap, Kiri and other similar programmes also reinforce the continuing centrality of the child within the family unit and reveal the tensions that can surface when the private realm of the family is monitored by outsiders – be they family acquaintances, social care agencies or the media.

Failings in the Duty of Care

199

Children, risk and ‘newsworthiness’ As observed, fictionalized accounts on childhood, parenting and childcare services contribute to popular discourses that frame public understanding and knowledge of contemporary child politics. Such insights are, of course, augmented by the reporting of actual incidents of child neglect by mainstream media channels. In many instances childcare agencies and social workers become the central focus of the story – and invariably the coverage is hostile at professionals’ mishandling of yet another case of child abuse. As R. Jones observes, ‘public perceptions of children’s services, and especially services to protect children […] are heavily influenced by media coverage and commentary’, much of which is critical, and ‘reflects an absence of trust and faith, and sometimes a hostility towards, professionals’ (2012: 83). Moreover, as speculated by P. Ayre this lack of public confidence in, and media criticism of, child protection services can in some ways be attributed to the child agencies themselves, and their reluctance to engage constructively with the media: [A]ll too often the media are regarded as essentially hostile to child protection services and the only strategic approach deployed is avoidance at all costs […] [T]his strategy has consisted of non-co-operation with press enquiries […] refusal to comment and failure to provide background information or to make credible spokespersons available for interview. (2001: 898)

Such an approach inevitably provides an opportunity for the media to take ownership of the narrative and construct stories which are commonly framed within discourses relating to children at risk and failings in the duty of care. These discourses are invariably the dominant narrative tropes adopted not only by the media but also by politicians, particularly in response to the findings of public enquiries into the deaths of children through neglect and abuse. This trend is evident in a 2003 statement made to the House of Commons by the then secretary of state for health, Alan Milburn, following the publication of Lord Laming’s Inquiry into the death of Victoria Climbié. Milburn stated that, despite ‘dozens of enquiries over the past few decades into awful cases of child abuse and neglect’, there continued to be ‘a remarkable consistency in both what went wrong and what is advocated to put it right’ (Hansard 2003). Furthermore, N. Parton (2004) highlights that ‘this theme of failure […] was a central one’ (2004: 80–81) not only within the context of parliamentary debates but also within the media coverage – as illustrated in

200

Discourses of Care

an article published in The Daily Mail following Milburn’s speech (29 January 2003): Thirty years ago Britain was shocked when seven-year-old Maria Colwell was beaten to death by her stepfather. Then too, there was utter determination that such tragedies would never happen again. Yet despite other victims and countless inquiries since, have the fundamental lessons really been learned? Hardly.

In a contemporary mediated public sphere, dominated by twenty-four-hour uninterrupted news cycles across multiple platforms, news agencies seek out stories that will capture the public’s imagination (and frequently draw on a pre-existing range of stereotypes and biases). For example, in the case of Victoria Climbié the circumstances surrounding the responsibility for her care were unconventional by Western standards. Born in the Ivory Coast, Climbié’s parents informally fostered her out to maternal aunt, Marie-Thérèse Kouao – a woman of whom they had limited knowledge and contact with prior to the agreement. Kouao, a French national, initially lived with Climbié in Paris in 1998. While residing there, Kouao came under the scrutiny of French social care authorities after Climbié’s school issued a child-at-risk notification. This, combined with Kouao’s rent arrears and a requirement to repay child benefit which was mistakenly paid to her, triggered her decision to relocate to the UK in 1999. Climbié’s domestic arrangements were unusual in comparison to the normative expectations associated with family and parenting within a UK context. In the preceding months leading up to Climbié’s murder at the hands of her guardians, Kouao, her boyfriend, Carl Manning, and Climbié herself came into contact with a variety of public agencies, and Climbié was admitted to two separate hospitals on suspicion that she was being harmed. She was known by four social services departments, two Metropolitan Police child protection teams and a specialist manager at the National Society for the Prevention of Child Cruelty (Laming 2003). The circumstances of Climbié’s upbringing and the failings of the child protection and related agencies in their duty of care assumed a heightened sense of newsworthiness following the findings of the Laming Inquiry. Incidents involving the unlawful deaths of children are considered to be ‘an area of major public concern’ and, as a consequence, receive a considerable degree of media scrutiny (Berry et al. 2012: 568). As Ayre argues, much of that scrutiny ‘in the absence of any contribution from official sources […] is usually highly critical’ of the child protection services (2001: 898), who stand accused of having failed in their duty to protect vulnerable children in their care. However, by focusing

Failings in the Duty of Care

201

solely on this one aspect of the narrative – the repeated representations of social workers’ bad care practices – the media can foster the sense that there is a continuous crisis in the care and monitoring of those who are recognized as being at greatest risk. Recently, this has been illustrated in relation to the cases of Ellie Butler (d. 2013) and Liam Fee (d. 2014). However, what is notable in the case of Ellie Butler is that while routine criticisms were levelled at the independent child protection service that was responsible for the monitoring of her care, condemnation extended beyond these traditional frames of reference to include the criminal justice system itself.

Ellie Butler On 21 June 2016 Ben Butler was convicted of the murder of his daughter Ellie Butler, and sentenced to a minimum of twenty-three years. Ellie Butler’s mother, Jennie Gray, was jailed for forty-two months for perverting the course of justice. Both parents were found guilty of child cruelty. During the trial, Ben Butler was described in court as being an ‘angry, overbearing and manipulative’ individual who appeared to exhibit a ‘volatile temper which could explode at any time’ (BBC News [online]: 21 June 2016). The events leading up to the death of Ellie Butler on 28 October 2013 provide a catalogue of missed opportunities and errors in judgement by those who were directly responsible for the monitoring of her care. Between 2007 and 2012 Ellie Butler had been in the care of her maternal grandparents, Neal and Linda Gray, following the conviction of Ben Butler in 2007 at the family court, where he was found guilty of causing serious injury to his daughter. In July 2012 this conviction was overturned on appeal by Lady Justice Hogg, who, according to The Daily Mail (22 June 2016) ‘exonerated Butler’, ‘dismissed evidence of domestic abuse’ and ‘ignored social services’ pleas’ not to return Ellie to the parental home. Furthermore, Lady Justice Hogg had issued a court order at Butler’s appeal in 2012 which stipulated that an independent social work agency (Services for Children (S4C)) be appointed to monitor Ellie on her return to the parental home. This decision was made in spite of protestations from social services staff at Sutton Council, who until the implementation of the court order had overseen Ellie’s care and recommended that she should not be returned to her parents. By November 2012 Ellie was back living in the family home – where approximately one year later she was murdered by her father.

202

Discourses of Care

Following Ben Butler’s trial and conviction, Malcolm McHaffie, deputy chief crown prosecutor for CPS London, was reported as stating, ‘Ellie Butler was murdered in her home, where she should have felt safe, by her violent father who should have loved and protected her’ (BBC News [online]: 21 June 2016). At the same time there was also a recognition by the media that particular agencies and organizations had failed in their duty to safeguard Ellie from a home where violence and cruelty were commonplace. In a report in The Guardian (23 June 2016) the headline ran, ‘Ellie Butler Had Begged Not to Be Sent Back to Her Parents, Says Aunt.’ In the account provided, the article states, In another email exchange on 29 October 2012 with Julie Gray, one of the social workers – who worked for Services for Children (S4C) – admitted knowing Ellie did not want to return to her parents and said for that reason the handover was going to be speeded up. (Taylor, The Guardian, 23 June, 2016)

Given that this highlights Ellie Butler’s reluctance at being returned to the parental home, it does of course raise questions as to why S4C ignored both the child and the extended family’s request not to place Ellie back in the care of her parents. In their defence, S4C argued that it was not within their remit to challenge the order delivered by Justice Hogg in 2012 and that they were simply acting on her recommendations that Ellie should be returned to her parents, as reported in The Sun (26 June 2016). In the article ‘Ellie – 3 Who Failed Victim?’, a representative for S4C stated, ‘Services for Children […] were to look at Ellie going back – if it was in her best interests. Yes, they did agree Ellie should. But they were acting from a judge saying they (Ellie's parents) were completely exonerated.’ Arguably, this indicates that the independent social work agency S4C were attempting to distance themselves from the decisionmaking process that contributed to Ellie Butler’s death, despite the fact that ‘the wider Gray family say they repeatedly warned of the dangers of returning Ellie to her parents, but complained that they were ignored’ (The Sun 26 June 2016). However, in this instance, in relation to the question of care as represented in the media, in contrast to previous patterns of reporting on child abuse and neglect, Justice Hogg does not escape the media’s scrutiny. As highlighted in the headline of The Mirror (22 June 2016), ‘Blood on their hands – A catalogue of concern against pair ignored. Chilling prediction given to judge who sent Ellie back to evil parents.’ The article states, The violent father of little Ellie Butler has begun a life sentence for her murder as it was revealed the judge who returned the child to his care was warned: ‘You’ll have blood on your hands.’

Failings in the Duty of Care

203

The source of the warning is Ellie’s grandfather who, we are subsequently informed, has written to children’s minister Edward Timpson to raise his concerns about what he believes was a failure of the judiciary to protect his granddaughter from her abusive and violent father. (The Mirror, 22 June 2016)

Clearly, the person primarily responsible for Ellie Butler’s death was her father. However, in documenting the failings of particular institutions and individuals, the media identified legitimate concerns about practices and approaches in relation to the safeguarding of children. In doing so, they highlight the continuing inability of child protection services and the judiciary to provide a place of safety. This incident also highlights some interesting developments within the contemporary child care sector that are less remarked upon in the press reports – in particular, the outsourcing of Council-run child protection services to the private sector. Following a judicial order, the responsibility for Ellie Butler’s social care was removed from Sutton Council’s child protection services and handed over to S4C, a private childcare agency. It is clear from associated documentation submitted to the court that while Sutton Council recommended that Ellie Butler should not be returned to the parental home, S4C, in spite of Ellie Butler’s protestations and in line with the judge’s recommendations, not only returned Ellie but also expedited her return to the parental home. This underlines the conflicting tensions and complexities between the private and the public sector in relation to childcare services, in that in this instance both clearly had conflicting views about Ellie Butler’s return to the parental home. It also raises questions about the visibility of responsibility and accountability when care goes wrong. Ultimately, the paradox of this case is that the normally maligned state-run social services attempted to act appropriately in terms of safeguarding a vulnerable child’s well-being, while the privatized S4C, acting on judicial advice, returned Ellie Butler to a family environment that was evidently unsafe.

Liam Fee During January to April 2014, ‘three child deaths occurred in quick succession’ in Fife, Scotland – one of which was that of the two-year-old toddler Liam Fee (BBC Scotland: 2 August 2017). As with Ellie Butler, Liam Fee was murdered

204

Discourses of Care

by his primary carers – his mother, Rachel Fee, and her wife, Nyomi Fee. Both women were convicted for the killing of the young child and were sentenced to life imprisonment at Livingston High Court on 6 July 2016. In a BBC Scotland documentary, Fife’s Child Killings: The Untold Story (2 August 2017), the investigative journalist Lisa Summers invites the audience to consider the role of social services in relation to Liam Fee’s case. As she observes, ‘The responsibility for Liam’s murder sits squarely with Rachel and Nyomi Fee […] but, what I really want to know is, could an earlier intervention by social services have saved Liam?’ Clearly, by raising the question there is an underlying assumption that had Fife Social Services intervened earlier, then Liam Fee’s death might have been prevented. This sense that the child protection team failed in its responsibility towards Liam Fee is reinforced by the revelations of his former childminder, Heather Farmer. During the course of her interview, Farmer reveals that on three separate occasions she contacted the social work department in Fife, such was her anxiety about the nature of Liam Fee’s welfare. When social services eventually responded to her concerns and visited the Fee household, they informed Farmer that they were satisfied with the care that Liam Fee was receiving and planned to take no further action; this was apparently in spite of the fact that on the day of their visit Liam had very noticeable bruising on his forehead (Fife’s Child Killings). It comes as no surprise that the media’s coverage of the case focused on ‘the systemic failures’ of Fife’s Child Protection Services (The Daily Record: 20 September 2016), with Lesley Bate, the former social worker assigned to Liam Fee’s case coming in for particular criticism. On 30 August 2016, The Times described Bate as ‘chaotic’, while The Scotsman (1 September 2016) noted that Bate ‘failed to assess potential risks’ that Liam was exposed to as a result of bad parenting. The media’s privileging of a risk-centred narrative is continued in the following days coverage by The Daily Express (2 September 2016), with the main headline declaring, ‘Social worker did put murdered toddler Liam Fee at risk.’ Meanwhile, The Times states, ‘Liam Fee was “failed” by his social worker’ (2 September 2016). Collectively, this brief summary of two high-profile cases reveals a series of mediated discourses that places an emphasis on apparent failures within the childcare sector rather than in relation to the family itself. As with Ellie Butler, however, the combined media narrative raises questions about accountability and responsibility. Rachel and Nyomi Fee were individuals with violent and abusive tendencies and while under their care Liam Fee was clearly at risk from exposure to ‘bad parenting’. Yet, as the aforementioned examples illustrate, it

Failings in the Duty of Care

205

would appear that a significant part of the media reportage apportioned the blame for Liam Fee’s situation to the particular social worker involved in the case.

Conclusion Cultural anxieties about child welfare and safety have become a dominant feature within contemporary culture. Over the past four decades, these concerns have been reflected in the media’s coverage of high-profile incidents of child abuse and neglect. With the death of Maria Colwell in 1973, discourses around notions of ‘children at risk’ and ‘failings in the duty of care’ began to emerge and became commonplace – within both the media and wider society. As a result, such terms became intrinsically linked not only to concerns about the day-today practice of child protection services. While previous generations focused on notions of ‘stranger-danger’ as being the ultimate threat to the safety of children, with the death of Maria there was a growing recognition that for some children the real risks and dangers were located within their own familial households. At the same time, however, from the media’s perspective, children were being let down not only by their parents but also by the very agencies and organizations who had a statutory and legal obligation to protect them from harm: the child protection services (private or state controlled) and the criminal justice system. As illustrated, mediated discourses about vulnerable children, be they fictionalized or actual episodes, signify the complexities associated with their monitoring, supervision and care of children, and where the identification of guilt is often confusingly spread between the private domain of parental neglect and abuse exacerbated by the apparent failures of public agencies. In doing so, media discourses raise uncomfortable questions as to who ultimately is responsible for the care of young children and who is to blame when bad care enters the frame. This has been evident in a series of prominent incidents over the past two decades, of which the case of Ellie Butler and Liam Fee are but two examples. Both of these children were classified as children at risk, as a result of prolonged exposure to bad parenting. As reported in the media, failings in the duty of care by child protection agencies and the judiciary were contributing factors in exposing them to this bad care. As a result of such episodes, child protection services and associated agencies received widespread criticism for failing to act in order to safeguard those children who were under their

206

Discourses of Care

jurisdiction. The media painted a picture of a system that was dysfunctional and in crisis, describing social workers as chaotic and disorganized – noting that they had missed opportunities to prevent further abuse being inflicted on both Ellie Butler and Liam Fee. In response to criticisms, those at the frontline of the childcare services became defensive and evasive. Indeed, as highlighted by Ayre, this has led those working within the childcare system to point their own finger of blame, this time at the media itself, for sensationalizing and distorting the incidents they report: When looking for explanations for the fault-oriented bias which characterizes child abuse reporting, it seems to have become conventional within the professions most associated with child abuse to place responsibility primarily on the news media. (2001: 891)

This defensive approach, although understandable, is unhelpful and potentially stifles the ability of child protection services to usefully reflect on reasons for failures of care. Ayre, for instance, advises that such a response is ill-judged and suggests that ‘a little reflection on the role played by the child protection system itself in the generation of this situation may be appropriate’ – even if, as is likely, the agencies feel under siege by the media. As Backett-Milburn and Harden argue, in the twenty-first century British society developed a preoccupation with children’s well-being, especially in terms of their day-to-day individual safety (2004: 430). Many of these concerns were and continue to be filtered through the prism of the media. While it can be assumed that the majority of children within the UK are reared in a nurturing and caring environment, as evidenced in subsequent public inquiries, there remain a substantial number of children who are at risk of bad care. Findings from the Serious Case Review on Ellie Butler by the Sutton Safeguarding Children Board (22 June 2016) catalogue a list of systemic failings and shortcomings on the part of the social services and portray a sector in a state of crisis. These failings on the part of such services are then amplified by media discourses – which in turn feed into the public perceptions about the inadequacies of the child care sector. While this blaming of the child protection agencies is in part a response to wider societal anxieties about children at risk, it can also dissuade those working within the sector from engaging with the wider debates around the nature of contemporary childcare services and responsibilities. Issues relating to children and care are undoubtedly complex, and those at the frontline of delivering such services work in demanding and challenging environments. At the same time,

Failings in the Duty of Care

207

however, repeated guarantees of learning from mistakes and a conviction that this must never happen again provide little reassurance to the public when further episodes of child abuse and neglect are reported in the media. Indeed, at the time of writing, yet another episode of infant mortality was reported in The Herald: the headline read ‘Tragedy of Repeated Failures in Neglected Boy’s Death’ (23 February 2018). As with previous cases, the story focused on the apparent ‘failures’, ‘chaos’ and ‘lack of intervention’ by the social care team responsible for the monitoring of two-year-old Clyde Campbell in Inverness. Once again, a familiar narrative is rehearsed and the notion that, when it comes to issues of children and care, the dominant discourses are unfailingly focused on the perception of risk and failings in the (state’s) duty of care .

Notes 1 See Lord Laming (2003) The Victoria Climbié Inquiry: Report of an Inquiry by Lord Laming, Cmnd 5730, London: The Stationary Office. 2 While Ariès’s controversial claims have been challenged by some medieval scholars (Orme 2001), arguably, certain aspects of his general thesis still act as the benchmark for understanding childhood.

References Ariès, P., ed (1962), Centuries of Childhood: A Social History of Family Life, London: Jonathan Cape. Anthony, A. (2009), ‘Baby P: Born into a nightmare of abuse, violence and despair, he never stood a chance’ [online] The Guardian. Available at https​://ww​w.the​guard​ian.c​ om/so​ciety​/2009​/aug/​16/ba​by-p-​famil​y (Accessed 4 December 2019). Ayre, P. (2001), ‘Child protection and the media: Lessons from the last three decades’, British Journal of Social Work, 31 (6): 887–901. Backett-Milburn, J. and J. Harden (2004), ‘How children and their families construct and negotiate risk, safety and danger’, Childhood, 11 (4): 429–91. BBC News (2016), ‘Ben Butler jailed for murdering daughter Ellie after custody battle’, [online] Available at: http:​//www​.bbc.​co.uk​/news​/uk-e​nglan​d-lon​don-3​65871​03 (accessed 6 November 2017). BBC News (2010), ‘Starved girl Khyra Ishaq’s death was preventable’, [online] Available at: http:​//www​.bbc.​com/n​ews/u​k-eng​land-​birmi​ngham​-1077​0907 (accessed 4 December 2019).

208

Discourses of Care

BBC News (2013), ‘Starved boy Daniel Pelka ‘invisible’ to professionals’, [online] Available at: http//: www.b​bc.co​.uk/n​ews/u​k-eng​land-​coven​try-2​41068​23 (accessed 4 December 2019). BBC News (2016), ‘Liam Fee: Mother and partner guilty of murdering two-year old boy’, [online] Available at: http:​//www​.bbc.​co.uk​/news​/uk-s​cotla​nd-ed​inbur​ghea​st-fi​fe-36​41741​5 (accessed 4 December 2019). Beatson, J. (2016a), ‘Social worker in Liam Fee case was chaotic, conduct hearing told’, The Times, 30 August, Available online: https​://ww​w.the​times​.co.u​k/edi​tion/​scotl​ and/s​ocial​-work​er-in​-liam​-fee-​case-​was-c​haoti​c-con​duct-​heari​ng-to​ld-82​s30c8​sh (accessed 15 November 2017). Beatson, J. (2016b), ‘Liam Fee – social worker “failed” to assess potential risks’, The Scotsman, 1 September, Available online: https​://ww​w.sco​tsman​.com/​regio​ns/ed​ inbur​gh-fi​fe-lo​thian​s/lia​m-fee​-soci​al-wo​rker-​faile​d-to-​asses​s-pot​entia​l-ris​ks-1-​ 42191​75 (accessed 15 November 2017). Beatson, J. (2016c), ‘Liam Fee was “failed” by his social worker, inquiry hears’, The Times, 2 September, Available online: https​://ww​w.the​times​.co.u​k/art​icle/​liam-​fee-w​as-fa​ iled-​by-hi​s-soc​ial-w​orker​-inqu​iry-h​ears-​j6mlz​3sns (accessed 14 November 2017). Beatson, J. (2016d), ‘Social worker did put murdered toddler Liam Fee at risk, inquiry told’, The Daily Express, 2 September, Available online: https​://ww​w.exp​ress.​co.uk​/ news​/uk/7​06767​/Soci​al-wo​rker-​murde​red-t​oddle​r-Lia​m-Fee​-risk​-hear​ing (accessed 14 November 2017). Berry, M., G. Philo, G. Tiripelli, S. Docherty and C. Macpherson (2012), ‘Media coverage and public understanding of sentencing policy in relation to crimes against children’, Criminology & Criminal Justice, 12 (5): 567–91. Bourke, J., ed (2005), Fear: A Cultural History, London: Virago. Brooks, L., ed (2006), The Story of Childhood: Growing Up in Modern Britain, London: Bloomsbury. Burgess, A., (2010), ‘Media risk campaigning in the UK: From mobile phones to “Baby P”’, Journal of Risk Research, 13 (1): 59–72. Butler, I. and M. Drakeford (2011), Social Work on Trial: The Colwell Inquiry and the State of Welfare, Bristol: Policy Press. Daily Mail (2003) Comment, 29 January, 12. Fife’s Child Killings: The Untold Story (2017), [TV programme] BBC1, Scotland, 2 August. Furedi, F., ed (2001), Paranoid Parenting: Why Ignoring the Experts May Be Best for Your Child, London: Allen Lane. Green, D. A. (2008), ‘Suitable vehicles: Framing blame and justice when children kill a child’, Crime Media, Culture, 4 (2): 197–220. Hansard (2003), House of Commons Debate, 28 January, Column 739, London: The Stationary Office. Hendricks, H. (2007), ‘Constructions and reconstructions of British childhood: An interpretative survey 1800 to the present’, in A. James and A. Prout (eds),

Failings in the Duty of Care

209

Constructing and Reconstructing Childhood: Contemporary Issues in the Sociological Study of Childhood, 3rd edn, London: Falmer. ITV News (2016), ‘Father jailed for life for six-year-old daughters murder’ [online]. Available https​://ww​w.itv​.com/​news/​story​/2016​-06-2​1/fat​her-j​ailed​-for-​life-​fors​ix-ye​ar-ol​d-dau​ghter​s-mur​der/ (accessed 4 December 2019). James, A. and A. Prout, eds (2007). Constructing and Reconstructing Childhood: Contemporary Issues in the Sociological Study of Childhood, 3rd edn, London: Falmer. Jones, R. (2012), ‘Child protection, social work and the media: Doing as well as being done to’, Research, Policy and Planning, 29 (2): 83–94. Kiri (2018), [TV programme] Channel 4, 10–31 January. Kitzinger, J. (2004), Framing Abuse: Media Influence and Public Understandings of Sexual Violence Against Children, London: Pluto Press. Lord Laming (2003), The Victoria Climbié Inquiry: Report of an Inquiry by Lord Laming, Cmnd 5730, London: The Stationary Office. Lonne, B. and N., Parton (2014), ‘Portrayals of child abuse scandals in the media in Australia and England: Impact on practice, policy, and systems’, Child Abuse & Neglect, 38 (5): 822–36. Moncur, J. (2016), ‘Liam Fee social worker struck off over catalogue of misconduct charges’, Daily Record, 20 September, Available online: https​://ww​w.dai​lyrec​ord.c​ o.uk/​news/​scott​ish-n​ews/l​iam-f​ee-so​cial-​worke​r-fou​nd-88​75143​ (accessed 15 January 2018). Naysmith, S. (2018), ‘Tragedy of repeated failures in neglected boy’s death’, The Herald, 23 February. Orme, N. (2001), Medieval Children, New Haven and London: Yale University Press. Parton, N. (2004), ‘From Maria Colwell to Victoria Climbié: Reflections on public inquiries into child abuse a generation apart’, Child Abuse Review, 13 (2): 80–94. Scraton, P. (1997), Childhood in Crisis, London: UCL Press. Spillett, R. (2016), ‘Judge with “blood on Her Hands”’, Daily Mail, 21 June, Available online: http:​//www​.dail​ymail​.co.u​k/new​s/art​icle-​36005​45/Fa​mily-​court​-judg​e-ret​ urned​-Elli​e-kil​ler-f​ather​-desp​ite-k​nowin​g-dis​hones​t-vio​lent.​html (accessed 18 January 2018). Taylor, D. (2016), ‘Ellie Butler had begged not to be sent home, aunt says’, The Guardian, 22 June, Available online: https​://ww​w.the​guard​ian.c​om/uk​-news​/2016​/jun/​22/ el​lie-b​utler​-had-​begge​d-not​-to-b​e-sen​t-bac​k-to-​her-p​arent​s-say​s-aun​t (accessed 18 January 2018). The Slap (2011), [TV programme] BBC 4, 27 October–15 December. Tsiolkas, C. (2008), The Slap, Crows Nest NSW: Allen & Unwin. Warner, J. (2014). ‘“Heads must roll?” Emotional politics, the press and the death of Baby P’, British Journal of Social Work, 44 (6): 1637–53. Zelizer, V., ed (1994), Pricing the Priceless Child: The Changing Social Values of Children, 2nd edn, Princeton: Princeton University Press.

11

Care and cultures of television news production The case of BBC Newsnight Rowan Aust

Care is claimed as central to the work of the British Broadcasting Corporation (BBC). The corporation’s declaration to prospective employees on the BBC website states, ‘Our values’ are as follows: Our aim is simple – to enrich people’s lives with programmes and services that inform, educate and entertain by being the most creative organisation in the world. But we don’t focus simply on what we do – we also care how we do it. (BBC 2019; emphasis added)

The meaning is clear: to work at the BBC, one must care about how one works. The intent of this chapter is to demonstrate how the BBC, despite its stated aim, has failed to institute a structure of care within its news division. What I wish to consider are the possibilities and, arguably, the impossibilities of implementing an ethics of care within television production. Situated within the aims of this collection this chapter seeks to contribute to the analysis of the practices and discourses of care that circulate within media production through a case study of the BBC2’s flagship weeknight news and current affairs programme, Newsnight (1979–). In particular I will focus on two recent and interconnected scandals – Savile and McAlpine – that engulfed the programme and the BBC reports that were commissioned in their wake. The chapter draws upon these reports into the BBC’s news production practice following the scandals, alongside anonymized interviews with Newsnight staff members both past and present, in order to question the efficacy of the BBC’s self-declared ethos of care.1 The context of this discussion, the Savile and McAlpine scandals, is as follows: In October 2011, the broadcaster and celebrity Jimmy Savile died. Soon after, producer Meirion Jones and reporter Liz McKean of the BBC’s Newsnight

Care and Cultures of Television News Production

211

programme started an investigation into allegations of paedophilia involving Savile.2 This investigation was shelved by Newsnight. A year later, the Savile allegations surfaced in an ITV programme, Exposure. The original Newsnight investigation was revealed and the resulting scandal over its shelving resulted in the then BBC director general, George Entwistle, resigning and the Newsnight editor, Peter Rippon, being recused from his job. Contemporaneously, Newsnight had commenced an investigation into abuse within care homes. The report, transmitted on 2 November 2012, contained a reference to an anonymized Tory peer who, it was alleged, took part in the reported abuse at one of the homes under investigation. This peer was identified on the internet as Lord McAlpine, who subsequently sued the BBC for libel and won. Numerous members of the news division lost their positions. The timeline of events was as follows:3 29 October 2011: Jimmy Savile dies.

31 October 2011: Meirion Jones and Liz McKean commence Newsnight investigation.

9 December 2011: Peter Rippon, Newsnight editor, pulls the investigation.

2 October 2012: catalysed by the pre-publicity surrounding the imminent transmission of an ITV broadcast on Savile, Peter Rippon writes a blog for the BBC website explaining the pulling of the investigation.

3 October 2012: ITV’s Exposure: The Other Side of Jimmy Savile is aired. It is presented by Mark Williams-Thomas, who had worked with Jones and McKean on the Newsnight investigation.

12 October 2012: BBC launches the Pollard Review into the management of the Newsnight story and the Smith Review, to examine the culture of the BBC during the time Savile worked at the corporation.

22 October 2012: Newsnight editor Peter Rippon is recused from his job; Jimmy Savile - What the BBC Knew is broadcast on BBC ONE as part of its Panorama strand.

2 November 2012: Newsnight airs a report into alleged abuse in children’s care homes in North Wales; it is this report that subsequently becomes known as ‘McAlpine’, despite the fact the peer was not named - he was named on Twitter by other parties.

10 November 2012: BBC Director General George Entwistle resigns.

12 November 2012: Ken MacQuarrie reports to the Executive Board on the handling of McAlpine, concluding ‘basic journalistic checks were not completed’. The same day, BBC director of news Helen Boaden and her deputy Stephen Mitchell are asked to ‘step aside’; Boaden subsequently returns to her role but Mitchell resigns. Both Peter Rippon and Liz Gibbons (the acting Editor of Newsnight after Rippon was recused post-Savile and in charge on 2 November) are moved permanently to different roles within the BBC.

North Wales; it is this report that subsequently becomes known as ‘McAlpine’, despite the fact the peer was not named - he was named on Twitter by other parties.

212

Discourses of Care

10 November 2012: BBC Director General George Entwistle resigns.

12 November 2012: Ken MacQuarrie reports to the Executive Board on the handling of McAlpine, concluding ‘basic journalistic checks were not completed’. The same day, BBC director of news Helen Boaden and her deputy Stephen Mitchell are asked to ‘step aside’; Boaden subsequently returns to her role but Mitchell resigns. Both Peter Rippon and Liz Gibbons (the acting Editor of Newsnight after Rippon was recused post-Savile and in charge on 2 November) are moved permanently to different roles within the BBC.

18 December 2012: the Pollard Review is released.

2 May 2013: Respect at Work report, set up to investigate bullying and harassment at the BBC post-Savile, is released.

25 February 2016: the Dame Janet Smith report on Jimmy Savile’s crimes and the historic culture of the BBC, is released.

This chapter focuses on the contemporary care culture of the BBC as demonstrated by the Savile and McAlpine crises. For the purposes of my argument, care is defined as having two key elements, which together articulate a means of care that can be applied in a systematized, practical way. First, it uses Joan Tronto’s summation of care as responsive and being enacted within a process of recognition/action/giving/receiving (Tronto 1993). These ‘four phases’ (ibid., 105) of care are interdependent. For care to be complete(d), both the carer and the recipient need to recognize their active participation in the caring process. So, the recognition of care must be dual, between carer and recipient; the action must be apposite as deemed by both parties; care should be met directly, not secondarily (e.g. in the giving of money for care); finally, the care must be recognized by the recipient as beneficial, not merely deemed so by the carer. Within the definition used here is Eva Feder Kittay’s foundational element of ‘selves in-relation’. This places as paramount an operational model that foregrounds the idea ‘if we see ourselves as always selves in-relation, we [can] understand that our own sense of well-being is tied to the adequate care and well-being of another’ (Kittay 2011: 54). Together, these elements are considered as a form of integrated care: where care for the individual is made essential to the operation of an institution through its integration into practice. This concept is transposed from healthcare theory, which although maintains that integrated care maintains by definition a measure of fluidity in practice, is described as follows: Integration is at the heart of systems theory and, therefore, central to organisational design and performance All organisations (and systems) are, to some extent,

Care and Cultures of Television News Production

213

hierarchical structures that are comprised of separate, but interconnected components; these components are supposed to play complementary roles in order to accomplish their joint tasks. However, the division, decentralisation, and specialisation found in the architecture of more complex organisations usually interfere with efficiency and quality goals. Therefore, the fulfilment of system aims necessitates co-operation and collaboration among and between the various parts of the organisation or system. In this sense, integration is the ‘glue’ that bonds the entity together. (Kodner 2002: 2)

Integrated care – ‘the “glue” that bonds the entity together’ via ‘cooperation and collaboration’ – is what the BBC purports to do within its declared BBC Values. Additionally, the BBC commissioned its own ‘Respect at Work’ initiative, convened ostensibly to investigate bullying and harassment at the BBC postSavile scandal (BBC 2013). Within this context an examination of care within the corporation is apposite.

Care at the BBC: BBC values and their interpretative possibilities The BBC website states that ‘we don’t focus simply on what we do – we also care how we do it. We have six values, or standards, which people across the BBC share. They represent the expectations we have for ourselves and each other, they guide our day-to-day decisions and the way we behave.’ The purpose of care in this statement is explicit as it directs the action, that people should use ‘care’ in how they behave. There is, however, no instruction on how care is activated or what the word might mean. Instead, that is left for individual interpretation. Meaning slips throughout this statement, as the use of the word ‘we’ shifts from the corporation to the employee, fusing the two into a symbiotic interdependency: employees make the BBC. But this remains distinct from Feder Kittay’s conception of ‘selves in-relation’, as the BBC statement demands a devotion to the corporation, which is in opposition to ‘well-being is tied to the adequate care and well-being of another’. The BBC declares that its work rests on shared ‘values’, ‘standards’ and ‘the expectations we have for ourselves and each other, they guide our day-to-day decisions and the way we behave’. Autonomy, however, is removed as the self is subsumed into the corporation. The BBC constitutes the conceptual governing body, from which behavioural and cultural approval must be sought and gained in order to progress. This is an active barrier

214

Discourses of Care

to either recognizing and activating care as per Tronto or understanding one’s own actions as occurring as part of a consequential network as per Feder Kittay, because the self is recognized only in relation to the corporation. The BBC has long relied upon the cultural approval that BBC employees sought from the corporation. Tom Burns identified in 1977 a ‘BBC type’ who, through a system of ‘approved conduct and demeanour [...] consonant with the prevailing code by which individuals (inter pares) were selected and gained approval and promotion’ (1977: 45–6). The meaning in ‘Our values’ is also a form of identification as employees seek to become a ‘BBC type’, which demands a vertical relationship with the idea of the BBC as paramount and one that is validated by the employer, not by practice within a community. (An interviewee echoed this sensibility when they commented, ‘The ultimate goal is management. […] The idea that making television is merely a step to managing television is key at the BBC’ (Anonymous, June 2019).) This itself denies care because it denies caring conditions. If vertical approbation was replaced by horizontal, communitarian practice, the employment demand would be integrated across the different strata, not just upwards. Communitarian practice, again turning to Feder Kittay, recognizes the problem that ‘begins with the assumption that society [here the BBC] is an association of equals, of those who can function independently and who are equally situated with respect to power’ (Kittay 2001: 528). The corporation, with its hierarchical structure and systems of ascension by approval, is palpably not an association of equals. Inequality occludes caring conditions because it occludes dependency, itself a condition of care. Feder Kittay states, As long as we continue to occlude the existence of dependency, our political theory excludes, first, those who are temporarily or permanently dependent [and second] those whose labor is devoted to the care of dependents […] and third, the moral, social, and political importance of relationships of dependency rooted in the facts of human vulnerability and frailty. (ibid., 529)

Frailty and dependency have to be recognized for care to be possible. If this were done, the behavioural recognition the ‘BBC Values’ purport to articulate could be enacted. In my professional experience at the BBC, the systems of ‘care’ in day-to-day news production revolve around the completion of risk assessments, where a form is completed prior to any shoot to highlight likely risks and ‘referring up’, by which risks or ongoing difficulties are referred to a more senior staff member.

Care and Cultures of Television News Production

215

Identification with the corporate body continues further through the BBC Values, the headings of which are as follows: Trust is the foundation of the BBC; we are independent, impartial and honest Audiences are at the heart of everything we do We take pride in delivering quality and value for money Creativity is the lifeblood of our organisation We respect each other and celebrate our diversity We are one BBC; great things happen when we work together. (BBC 2019)

Philip Schlesinger traces how the above management system was developed and articulated under the directorship of Greg Dyke through a process of staff consultation and management theory learnt by Dyke himself – a process that occurred at a time viewed by BBC staff as one of a highpoint of morale, where communication between management and staff at the corporation was seen as occurring effectively (2010: 276). The values additionally recall a time that, following the Hutton crisis, has definitely passed. Greg Dyke resigned as director general after the Hutton Report found him culpable when Andrew Gilligan revealed on the Today programme that Dr David Kelly was the source of a BBC report into the ‘sexed-up’ government dossier report into Iraqi WMDs. After he was named, Kelly committed suicide. In doing so, these values can be seen as representative of a nostalgia for a BBC that was ended by its own scandal. The resulting ‘BBC Values’ remain only as emphatic of an ethos by which staff should work. The keywords of ‘trust … audiences … pride … quality … value … creativity … respect … diversity’ deliver an accumulation of ethical vagaries, culminating in ‘We are one BBC’. When it described BBC staff as having a ‘strong affiliation’ with the corporation, the ‘Respect at Work’ report highlighted their continuing identification with work as being a ‘personally shared endeavour’ (BBC 2013: 10). However, despite the continued use of the word ‘we’, the ‘shared endeavour’ of the BBC as articulated in the BBC Values is inherently individualistic because access to the ‘we’ is contingent on the individual behaving in a certain way: the individual carries the responsibility. These values constitute the ‘lifeworld’ of the BBC, the ‘frame-of-reference that provides individuals with implicit guidelines for organizing, shaping their interpretations and enacting meaning to events and situations’ (Bjørn and Ngwenyama 2009: 229). Therefore, a lifeworld is described which makes conflicting demands on the identity of its inhabitants, as it stresses the dual primacy of the corporate and individual bodies with no

216

Discourses of Care

description of how to enact communal activity – while broadcast production is inherently collaborative and communal. The ‘values’ deliver no substantive guidance on how to confront and overcome the everyday existential challenges of operating within the organization and they offer no guidance on what care means in practice. It is these quotidian tests that are revealed in the reported actions surrounding the Savile and McAlpine scandals. These reported actions suggest a lack of cohesion between staff – a lack of structured responsiveness in the sense of recognition/action/giving/receiving and no conception of working in-relation to each other.

Newsnight, the Savile/McAlpine crises and the BBC: ‘Bad’ care in practice The circumstances surrounding the Savile and McAlpine crises at the BBC are worthy of scrutiny as they reveal fissures in the BBC system in place and also provide extensive documentary evidence owing to the Pollard Review, the McQuarrie Review and the subsequent Respect at Work report. The two initial investigations looked at the surrounding context of the Savile and McAlpine scandals, while Respect at Work followed the revelations that Savile had been able to abuse on BBC premises. These reports are the culmination of a systematic implementation of care policies within the BBC that started under the tenure of Greg Dyke as director general. As has been described, the BBC’s self-scrutiny was catalysed by its inadequate account for a shelved Newsnight investigation into Jimmy Savile in 2011 and a subsequent mistake on a different report into abuse within care homes, which resulted in a libel loss for the corporation. The punitive aspects of post-Savile and McAlpine sought to highlight individual failures, with staff removed from their posts as a declarative act of who was to blame. The reports – both Pollard, into Savile, and McQuarrie, into McAlpine – afford numerous glimpses into the working culture of the BBC news division. The Pollard Review, convened to investigate the circumstances surrounding the shelving of the Newsnight report into Jimmy Savile, identified a ‘silo mentality’ at the BBC – the notion that everyone knows what his or her job is, but there is a reluctance to step into someone else’s territory, and indeed, a person who does would be criticised. (Pollard 2012: 185)

Care and Cultures of Television News Production

217

The articulated fear of being ‘criticised’ and the territorialism are in direct contradiction of understanding selves as related to one another – or if there is an understanding, there is a conceptual barrier to acting upon it. It also fails the criteria of ‘one BBC’ as per the value of ‘work[ing] together’ purported in the declarative care of ‘BBC values’. The Pollard Review offers various instances of care, in the sense described above, failing in its inaction. These include Helen Boaden, the former director of news, who said ‘it has been known for editors to use bosses or editorial policy as arse-covering reasons’ (Pollard, 2012: 77). Boaden illuminates a structure that allows blame to be placed elsewhere as a means of avoiding responsibility and also permits the employee to isolate themselves from any relational activity because of the protection the corporate body affords. The lack of trust from senior management towards Meirion Jones (who started the first Newsnight investigation into Savile), who was viewed by many as the source of leaks to the press, is made explicit. There are 24 references to Jones’s supposed ‘leaking’ across the 185-page document; the widespread perception of his disloyalty led James Hardy, then head of communications for BBC News, to say he would ‘drip poison about Meirion’s suspected role’ (ibid., 121). A system is described that is profoundly concerned with the way others behave but performed in a climate of mistrust. The report is also striking in its revelations regarding the dependence on email of senior BBC staff, both in everyday work and as the Savile crisis unfolded. The dependency on email by the actors in the Savile scandal is evident from Pollard’s first action: he trawled the email accounts of those asked to contribute to the review (ibid., 3). An enormous amount of the report is a forensic analysis of emails sent. The dependency on email is understandable as television production and management is inherently collaborative and requires a great deal of knowledge sharing across a spread of geographical locations; email allows a traceable conversation as work progresses. Yet, email’s inefficiencies as a medium are manifold: it provides ‘deficient information quality’, has an ‘inferior ability [...] in allowing synchronous communication (i.e. fast exchange of messages) and also deficiencies in allowing trust-based relations’; the ‘collaboration inefficiencies resulting from email usage are particularly salient in group settings’, while ‘email does not provide a public arena in which communal knowledge can be built, and shared meanings established’ (Pillet & Carillo 2016: 114). In other words, the efficacy of email is unreliable, particularly

218

Discourses of Care

in a fast-paced, stressful environment such as television production: haste makes the writer often unable to consider their words or remember their causation, while the medium itself also mitigates against trust because meaning, without the additional communicative strategies of voice and/or facial recognition, is easily misinterpreted. There are incidences where the failure of email is particularly evident. In the description given by Pollard of the creation of Peter Rippon’s blog (created to explain the shelving of the Savile story), Rippon sent the draft to six original recipients, who then disseminated (by evidence of subsequent advice or ‘tweaking’) to three further offices, allowing commentary from an unspecified number of contributors. In this light, and considering email as an ineffective medium for collaborative work, the description of its preparation as ‘chaotic’ feels near-generous, while it is unsurprising the published blog was deemed ‘inaccurate’ (Pollard 2012: 145–6 and 150). Pollard delivers a picture of a networked system where voices were raised but not heard, and statements made but either ignored or unacknowledged. This points to a further problem, highlighted by Pollard, around the inconsistent ways in which email is used. George Entwistle, the director general in crisis, could have a lag of three days before receiving an email ‘due to the way [his] mailbox is arranged’ (ibid., 166); he also admitted to ignoring emails from colleagues he considered often ‘out-of-sync’ with events (ibid., 110). Email, although central to operations, is still something that can be ignored by the highest staff members (or perhaps because). It cannot be assumed the recipient of a message has seen it or will acknowledge its contents. Email as written record also presents other problems. As an interviewee points out, the persistence of email causes fearfulness: [W]hen I started there was no email or mobile phone texts. There were production secretaries, departmental secretaries and chief assistants. [...] you had someone to talk to when things were going wrong. [...] Also people were a lot less scared and intimidated. Maybe because there was no written record you were asked your opinion on people or events. (Anonymous 2019)

Email networks people but simultaneously atomizes them. Certainly, it disallows any process of care in the recognition/action/giving/receiving model. Present here instead is a rush of voices and an accumulation of ideas: interference and inference as opposed to clarity. No care is taken, however one might conceptualize the term.

Care and Cultures of Television News Production

219

McAlpine and the wider culture of newsgathering The McAlpine scandal and the subsequent report into it by Ken MacQuarrie reveal different failures of care that reside within the culture of the newsroom. First, there is the obvious pressure the staff were under: as MacQuarrie says, ‘The Newsnight editorial management structure had been seriously weakened since the editor stood aside and one of the deputy editors left the organisation. The editorial leadership of the team was under very considerable pressure’ (MacQuarrie 2012). That the BBC did not put in place measures to alleviate the pressure on staff points to the wider culture of news production; as one interviewee phrased it, ‘the more senior you got, the bigger [the] stories and you were expected to deliver them [...] there was an “are you up to the job” feeling as well’ (Anonymous 2018c). Pressure was there to be withstood, not recognized as even sporadically unbearable; the need for care, however occasional, is omitted as per Tronto’s model of recognizing and responding to given situations and conditions. MacQuarrie goes on with reference to the editorial failures made in the McAlpine report: ‘During the editorial decision-making process, some of the basic journalistic checks were not completed. Specifically, identification was not confirmed by photograph with the first victim. The second victim could not be traced in order to provide up to date corroboration’ (MacQuarrie 2012). Another interviewee commented on these failures ‘there but for the grace of God’ (Anonymous 2018b): the mistakes identified as made by the production team in the case of McAlpine were common practice, not in fact anything unordinary. In addition to this, an interviewee revealed that there was an impetus ‘to prove the programme had not been harmed [by Savile]’ (Anonymous 2018c). There is, therefore, a culture of pressure, evidenced in rapidity and fast turnaround, combined with the cultural weight of protecting the corporate body in the shape of the programme. This culture of the newsroom contains a tendency that actively mitigates against care: individualism. As we have seen, the BBC defines its work system and includes its own implication of ‘care’ in the terms outlined in its ‘BBC Values’ (BBC 2019). These however place the onus on the individual as he/she operates within the hierarchy of the corporation: the relationship to care is horizontal, with recourse to care being taken and given only within the boundaries of what benefits the corporation. This is a positioning that denies the collaborative nature of production. The emphasis on the individual within broadcast production has historical precedent with auteurism. More often associated with

220

Discourses of Care

cinema, but visible in television within the elevation of the television director or showrunner, and in news, specifically with the position of star presenter or correspondent, auteurism elevates the vision of single individuals over the shared endeavour. Stemming from literary theory it places as paramount the figure whose specific contribution, most visible in the style of a work, is deemed the most significant factor in the overall effect. An emphasis on individualism also allows the corporation to remain distanced from the individuals who work within it; responsibility is borne by the individual and in any crisis the corporate body remains relatively unscathed. The conflict inherent here is between the collaborative nature of production work and the individualized culture. This leaves individuals conceptually stranded and unable to function effectively: this is the failure of institutional care in the case of the BBC. Television news broadcasting amplifies individualism. News work involves visiting warzones, achieving access to the most sought-after people in the world, winning in a perpetual race to be watched and listened to first, not just delivering a story but delivering it first. It means engaging in a practice that is intensely competitive and as such demands a level of individualism that opposes any construct of communal care practice. Philip Schlesinger identified two key constants of newsgathering practice as ‘immediacy and competition’ (1987: 87), while further work on newsgathering has identified technological changes as placing increasing pressures on producers as their work is accelerated (Allan and Thorsen 2010; Cottle and Ashton 1999). The quotidian relationship between care, risk and newsgathering might be summed up in a description of a scene in Grozny during the Chechen war in 1995. BBC correspondent Jeremy Bowen, writing in his autobiography War Stories, describes Grozny as ‘the most violent, dangerous place I have ever been’. He states, ‘We had an appointment to meet Nigel Chandler, a freelance cameraman who was selling his pictures to the BBC. He had been living in cellars and shell holes with Chechen fighters for days and was relying on us for a lift out. I did not want to abandon him – and we needed his material’ (2006: 200–3). While care is at first glance foregrounded in this quote as Bowen seeks to rescue Chandler the cameraman, the caring act is contingent on Chandler having the material Bowen wants to use for his report. The extremity of the act of newsgathering, of ‘living in cellars and shell holes’ is undertaken not by Bowen but by Chandler, yet the pictures gathered by Chandler were to be used in a report fronted and therefore led by Bowen. Perhaps Bowen declines to recall other more selfless acts, but this quoted event illuminates nonetheless the networks relied upon to thrust the on-screen face forward. It is this ethos

Care and Cultures of Television News Production

221

that is held as exemplary in BBC newsgathering practice. As one interviewee explained, when promising producers are inducted into BBC management, they are sent on ‘creative retreats’. On these retreats, war correspondents demonstrate how to ‘be’ in news (Anonymous 2018c) and tasked with bringing this ethos into day-to-day practice. The war reporter is therefore valorized, both on screen and in news production. This is also present in political reporting, which places access to key personalities as paramount. This is cultivated by networks, which have to be built and maintained. Political correspondents are political operators themselves: their bodies act as the fulcrum of the network and the gatekeepers to information. There is, therefore, an accumulation of necessities that drives newsgathering practice and which are placed as central to ongoing practice: speed, exclusivity, access, competition, visibility and obscuration. However, not all news is newsgathering: in the cases of both Savile and McApline, they were investigative reports, where rapid delivery was not paramount; it can in fact be argued that speed was detrimental, at least in relation to McAlpine. Investigative journalism exists for the ‘exposure of information in the public interest’ (Carson and Farhall 2018: 1900); it is by its nature longer form and does not have the urgency of on-the-day reporting, such as that from a war zone or political crisis. It was a shift to urgency that catalysed the broadcast of the McAlpine story. When Channel 4’s political correspondent Michael Crick tweeted on the lunchtime of the Newsnight broadcast that ‘“senior political figure” due to be accused tonight by BBC of being paedophile denies allegations + tells me he’ll issue libel writ agst BBC [sic]’ (Sweney 2012), he pushed it into the daily news arena, amplifying the already stringent pressures on the Newsnight team and challenging the agenda of a rival channel. Crick’s actions are described by anonymous producer as ‘determined to spoil it all. [...] He got the story out the safest possible way by being on McAlpine’s denial side of things. But that was a really nasty piece of news reporting’ (Anonymous 2018c). Crick’s embodiment of the individualism, speed, competition, exclusivity and visibility served only to obscure the actual story: ‘Until [Crick] happened, it was the North Wales child abuse scandal’ (ibid.). In the case of McAlpine, rapidity was forced to overtake consideration (which also, though not a focus of this chapter, asks at which point Crick or Newsnight was thinking about the victims of the abuse investigated in the report and how their political machinations might affect them).4 In this instance there was, therefore, a conflation of newsgathering practice with investigative journalistic practice, forced by Crick’s actions. As MacQuarrie

222

Discourses of Care

concluded, the pressures upon the staff were already intolerable; care was not present. Rapidity, according to some, is endemic within BBC News – Helen Boaden made the case for a slower news cycle when she left the BBC in 2016. In an article for The Independent newspaper she states, We are unconstrained in our speed of coverage, unmatched in our fleetness of foot but do we lack the depth that we might achieve if we took our foot off the accelerator, or put the handbrake on, and stopped to observe more closely the world on which we are reporting? [...] I am unapologetically speaking up for the virtues of Slow. Slow Journalism which is engaging and dynamic of course but embodies impartiality, accuracy, expertise and evidence; the things which take time and resource. (Boaden 2016)

A slower investigative news production practice, that makes room for care, is therefore possible, but it requires ‘time and resource’. Slowing down news production may not be possible in all cases – a war does not cease, events will not unfold slower because coverage would like more time – but it is applicable in many cases. Boaden’s reference to ‘time’ is, in her speech, a call for lessening dependency on technology – she says technology ‘can – at worst – hinder, not help, the cause [of journalism] through the speed of the coverage it has engendered’ (ibid.) This is exemplified in the case of McAlpine. The reference to resources has its roots in the Producer Choice programme of change at the BBC in the 1990s.

Producer Choice: News in the BBC marketplace Producer Choice was the internal reform of the BBC that took place under Director General John Birt. Its central tenet was the shifting of production budgetary control to producers, who, by this thinking, would control their own project spending and reform the BBC from the point of its core broadcast function, making it more efficient in its spending of the licence fee: to ‘shake off the bureaucratic excesses of the past and redeem itself as a worthy recipient of public funding’ (Wegg‐Prosser and Harris 2007: 293). Annemarie Mol, writing in the context of healthcare and patient choice, illuminates the incompatibility of a logic of choice and a logic of care in their relation to temporality when she argues: In the logic of choice time is linear. The key moment, the moment a choice is being made, is embedded in a sequence: (neutral) facts (value-laden) choice

Care and Cultures of Television News Production

223

(technical) action. Once the action is over, it becomes possible to evaluate it. As an afterthought. In the logic of care this is different: time twists and turns. There is no single, crucial moment when all relevant facts/values are available. Problems emerge and as they are tackled new problems arise. (Mol 2008: 54)

Within the context of Producer Choice and care within new production, this incompatibility is applicable as the systems of choice applied within the new model engendered emphasis on the linearity of production while denying its unruly tendencies, the back and forth, the need for time and consideration. In doing this it introduced a ‘new morality within the corporation, one spread with missionary zeal by the accounting cadre, and one that was highly critical of what was seen as the wasteful and libertine past’ (Born 2005: 107). It transformed the BBC into an internal market where producers bid to make their programmes: the ‘new morality’ prescribed by cost, not care. Among the legion implications, the most pertinent here is the rise of casualization as the BBC shifted to a freelance staffing model, the ‘reductions in labour costs through cuts to core staffing were an inevitable result of the budget cuts imposed by efficiency drives’ (ibid., 181). Permanent staff left or were made redundant and were replaced by short-term contracted workers. Virginia Held makes note of the marketization of corporate institutions and the subsequent deleterious effects when she writes ‘from the perspective of the ideal market, values that cannot be reduced to market values are flaws. Social relations such as trust and caring are invisible’ (2006: 112). Trust and caring are not only invisible; they are impracticable within precarity. As an interviewee who went from staff to freelance commented, ‘the freelance game. I didn’t feel secure […] I did feel differently as a freelancer [I thought,] “Well, you’re paying me and you’re my boss […] who am I to argue?”’ (Anonymous 2018c). Social relations are elided from interactions as freelance staff lose both security and their place as stakeholders, and the possibility of care disappears. An everyday practice, ‘emerging from the ongoing and situated actions [of staff and managers] as they engage the world […] grounded in what it is people do every day’ (Orlikowski 2002: 249) is arrived at where people do not speak up and argue, let alone actively care. As with the embeddedness of email, freelance workers are atomized. Producer Choice can therefore be seen as removing the sense of full participation in a project, replaced by the notion that a worker is there for one function only. This mitigates against an idea of community and against the idea of a BBC that ‘works together’ in the way the BBC Values claim to aim for. A ‘notion of community

224

Discourses of Care

offers a way of situating notions of responsibility (social as well as individual), of interdependency, of non-voluntary, but still binding obligations, and of a self that is always embedded in a network of relationships’ (Kittay 2001: 523–4). Can community, and with it care, function within a corporation that encompasses neither? In its acceleration of the atomizing of production culture, Producer Choice also reiterated individualism. In newsrooms, where the primacy of the war reporter resides, individualism is therefore amplified further. Virginia Held describes the impossibility of collective caring – supposedly central to the operational activities of the BBC – when ‘individual preferences’ are maximized. Held argues, ‘The values of shared enjoyment or social responsibility or collective caring may well be worth promoting in the realm of culture and in the activities or practices of communication, but these are values that cannot even be registered in calculations of maximising individual preferences’ (Held 2006: 118). Therefore, not only is the purpose of taking care and how it should, or even could, be activated left unclear by the BBC Values; it is actively mitigated against with the onus they place on individual interpretation of care itself: Held’s ‘maximising of individual preferences.’ Staff are left with a startling lack of clarity. Instead of the BBC being held as a market, there is the possibility of its primary function being reimagined as a public service, reversing the ‘shift from treating broadcasting as a means to treating broadcasting as an end’ identified by Tom Burns (1977: 125) and culminating in Producer Choice and its ongoing repercussion. As Tronto argues, care must be a ‘moral choice’ for our public services (1993: 125). This also moves care away from the conception of care as derived from childcare or the caring institutions (hospitals, care homes, schools); it must be re-seen as an everyday, mundane act that is intrinsic to our being. As the BBC Values articulate, to care is to make an active choice of a particular situation. Instead, not to care about it must be the choice. Care should be integrated into being, not just practice. This radically shifts the way institutions might exist and has the potential to integrate an entirely different mind-set. How might care be enacted in an institution such as the BBC? Virginia Held’s thoughts on the marketization of education might be readily applied to the BBC: [S]eeing education and the market as totally opposed opens education to such misplaced criticism as that educators do not care at all about the inefficiencies, mismanagement and incompetence that can be found in their practices. It seems

Care and Cultures of Television News Production

225

better to see education and the market as having different priorities, as ordering their values differently. [...] This view of how we can appreciate multiple values in human activities while according them different priorities and recognising how important it is to order those priorities appropriately. (Held 2006: 125; emphasis in original)

By appreciating the multiplicities of care, of allowing time and guarding against the ‘immediacy and competition’ (Schlesinger 1987: 87) intrinsic to news culture but no longer required in long-form news production, care can reside.

Conclusion News production exists – and has long existed – within a network of relationships that oscillate in intensity as they are used to advance any one production. Some are protected, such as sources, while some are transparent, such as office colleagues. But all have an opaqueness that is endemic to the culture of television news production that values protectionism as paramount, rather than care. The value system at play is one unchanged since the time of Burns and Schlesinger, where exclusivity and immediacy are the factors by which achievement is judged (Burns 1977; Schlesinger 1987). As the news cycle has sped up, these values are redundant in long-form investigative news, which is now able to distinguish itself definitely from on-the-day programming: long form no longer needs to operate in the same cycle that envelops the constancy necessitated by online, even though it may retain the networks and the same sense of being fast-turnaround news. There may even be a more radical change needed within long-form investigative journalism, encompassing a ‘shift in […] practice from the “old model” of highly competitive single newsroom investigations to a collaborative model of multiple newsrooms (and countries) sharing information to expose wrongdoing’ (Carson and Farhall 2018: 1901). Sharing and collaboration are key in this model. The mistakes made in the Savile and the McAlpine cases were that the old values were applied to this long-form journalism. This ecology of relationships and values is where care can reside. It is, however, unable to settle because of the demands placed upon producers. These demands are where the cracks can take place, as evidenced by the Savile and the McAlpine scandals. There is a second aspect to this analysis: that the newsroom was an arena that omitted to care for its workers and that the aftermath of Savile/McAlpine ignored care, replacing it instead with ‘respect’ – as evidenced by ‘Respect at Work’, itself

226

Discourses of Care

an extension of BBC Values. These have little substantive to offer in practice to those at which they are aimed. The inadequacy of the Respect at Work review is its failure to articulate how a fundamental shift to an ethics of care might take place. The McAlpine crisis was about time and a broadcast forced to air because of the actions of a rival. Savile revealed far more about the internal mechanics of the BBC and how priorities and considerations were not shared but individuated. Within this, careers were ended, multiple lives damaged and one in particular left without time to recover: Liz McKean, the reporter on the original Savile story, died in 2017 aged fifty-two after suffering a stroke. In discussing McKean’s death, a Newsnight staffer commented that ‘her partner [McKean] felt it added to her stress. I really think the BBC didn’t take their duty of care seriously’ (Anonymous 2018a). The staffer recognizes here Tronto’s model of care: provision, in the need for the BBC’s ‘duty of care’ and a concomitant failure by the BBC to activate the requirements of that care. It is assumed, however, that the corporation understood its duty. Another interviewee commented, ‘The establishment closed ranks. Liz was called up to see the acting DG […] and told that whilst she could not be fired she would never advance at the BBC’ (Anonymous 2019). Here, an understanding of selves in-relation, as per Feder Kittay, is both foregrounded and denied by the institution. Care is needed, as the BBC acknowledges, but it cannot advance when the institution is paramount.

Notes 1 The interviews were gained informally through a network built during my own time working in the Newsnight office as part of the Newsnight Review and Review Show teams, respectively. This leant a candid nature to the information gathered. Time spent working on these shows, in 2007 and 2010, afforded a chance to observe how Newsnight operates, seeing as I was within the office but apart from it, working on an affiliated but separate programme. 2 Meirion Jones had a long-standing interest in Savile as his aunt was, until 1980, the head of Duncroft School, one of the centres of Savile’s abuses. In his interview for the Pollard Review, Jones said Savile’s death was ‘the cue for me to begin my investigation in earnest’ (Pollard 2012: 44). 3 The sources for this timeline are: Anonymous 2012a, b; MacQuarrie 2012; Pollard 2012. 4 The oscillating media treatment of Savile’s victims, depending on their age, gender and perceived authenticity, as well as where they sat within the media cycle of the posthumous revelations of Savile’s offending, is examined by Karen Boyle (2018).

Care and Cultures of Television News Production

227

References Allan, S. and E. Thorsen (2010), ‘Journalism, public service and BBC News Online’, in G. Meikle and G. Redden (eds), News Online: Transformation and Continuities, New York: Palgrave Macmillan. Anonymous (2012a, 19 December), ‘BBC inquiries: Who goes and who stays?’ Available online: https://www.bbc.co.uk/news/uk-20786533 (accessed 17 August 2019). Anonymous (2012b, 19 December), ‘Crisis at the BBC: Timeline of events’, Available online: https://www.bbc.co.uk/news/uk-20286848 (accessed 17 August 2019). Anonymous (2018a, February), [Correspondence with Newsnight staffer]. Anonymous (2018b, October), Interview with Newsnight producer/Interviewer: R. Aust. Anonymous (2018c, November), Interview with Newsnight producer/Interviewer: R. Aust. Anonymous (2019, January), Interview with Newsnight producer/Interviewer: R. Aust. BBC (2013), ‘Respect at work’, Available online: http:​//www​.bbc.​co.uk​/corp​orate​2/ins​ ideth​ebbc/​howwe​work/​repor​ts/re​spect​atwor​k.htm​l (accessed 17 August 2019). BBC (2019), ‘Our values’, Available online: https​://ww​w.bbc​.co.u​k/car​eers/​why-j​oin-u​s/ val​ues Bjørn, P. and O. Ngwenyama (2009), ‘Virtual team collaboration: Building shared meaning, resolving breakdowns and creating translucence’, Information Systems Journal, 19 (3): 227–53. Boaden, H. (2016, 29 September), ‘BBC Radio Director Helen Boaden resigns, criticising state of journalism’, The Independent. Available online: https​://ww​w.ind​ epend​ent.c​o.uk/​news/​media​/tv-r​adio/​bbc-r​adio-​direc​tor-h​elen-​boade​n-to-​annou​ nce-r​esign​ation​-at-p​rix-i​talia​-prev​iew-i​n-lam​pedus​a-a73​37181​.html​ (accessed 17 August 2019). Born, G. (2005), Uncertain Vision: Birt, Dyke and the Reinvention of the BBC, Vintage: London. Bowen, J. (2006), War Stories, London: Simon & Schuster. Boyle, K. (2018), ‘Television and/as testimony in the Jimmy Savile case’, Critical Studies in Television, 13 (4): 387–404. Burns, T. (1977), The BBC: Public Institution and Private World, London: Macmillan. Carson, A. and K. Farhall (2018), ‘Understanding collaborative investigative journalism in a “post-truth” age’, Journalism Studies, 19 (13): 1899–911. Cottle, S. and M. Ashton (1999), ‘From BBC newsroom to BBC newscentre: On changing technology and journalist practices’, Convergence: The International Journal of Research into New Media Technologies, 5 (3): 22–43. Held, V. (2006), The Ethics of Care: Personal, Political, and Global, New York & Oxford: Oxford University Press. Kittay, E. F. (2001), ‘A feminist public ethic of care meets the new communitarian family policy’, Ethics, 111 (3): 523–47.

228

Discourses of Care

Kittay, E. F. (2011), ‘The ethics of care, dependence, and disability’, Ratio Juris, 24 (1): 49–58. Kodner, D. L. and C. Spreeuwenberg (2002), ‘Integrated care: Meaning, logic, applications, and implications – a discussion paper’, International Journal of Integrated Care, 2 (4): 1–6. MacQuarrie, K. (2012), ‘Ken MacQuarrie report: Summary of findings’, Available online: https://www.bbc.co.uk/news/uk-20306096. Mol, A. (2008), The Logic of Care: Health and the Problem of Patient Choice, London: Routledge. Orlikowski, W. J. (2002), ‘Knowing in practice: Enacting a collective capability in distributed organizing’, Organization Science, 13 (3): 249–73. Pillet, J.-C. and K. D. A. Carillo (2016), ‘Email-free collaboration: An explanatory study on the formation of new work habits among knowledge workers’, International Journal of Information Management, 36: 113–25. Pollard, N. (2012), The Pollard Review. Retrieved from bbc.co.uk: http:​//dow​nload​s.bbc. co.u​k/bbc​trust​/asse​ts/fi​les/p​df/ou​r_wor​k/pol​lard_​revie​w/pol​lard_​revie​w.pdf​. Schlesinger, P. (1987), Putting ‘Reality’ Together: BBC News, London: Methuen. Schlesinger, P. (2010), ‘“The most creative organization in the world?” The BBC, “creativity” and managerial style’, International Journal of Cultural Policy, 16 (3): 271–85. Sweney, M. (2012), ‘Timeline: How Newsnight’s inaccurate Lord McAlpine report came about’, The Guardian. Available online: https​://ww​w.the​guard​ian.c​om/me​dia/2​012/d​ ec/20​/time​line-​newsn​ight-​lord-​mcalp​ine-r​eport​. Tronto, J. C. (1993). Moral Boundaries: A Political Argument for an Ethic of Care, New York and London: Routledge. Wegg‐Prosser, V. and M. Harris (2007), ‘Post bureaucracy and the politics of forgetting: The management of change at the BBC, 1991–2002’, Journal of Organizational Change Management, 20 (3): 290–303.

Section Five

Care and collaboration: Reflections on caregiving, receiving and the creative process

230 

12

B is for … Body Andrew Kötting

They make art as they breathe, hard and fast and memorable; paintings, postcards, installations, rants, poems and freewheeling film ‘songs’ … . Eden ventriloquizes her father to provide the written text for her drawings and paintings that are already replete with meaning. … she provides a commentary and series of foot-notes for the Grand Projects that her father is undertaking … . An agenda or appendix in a different form and much truer or closer to the original sign makings and drawings on the walls of caves. Iain Sinclair 2018 In 2016 I gave a performance paper under the guise of A Discourse of Care at the University of Glasgow in which I attempted to contextualize the impact that my daughter Eden had (has) had on my practice. There was the work before Eden and there was the work after Eden. I had also decided that I did not want the experience for the audience to be too academic or intellectually arcane in its tone, so I set about performing the paper. However I did want the experience to echo in part, or at least contain trace elements of, the thing that is the ‘unfathomability’ of living and collaborating with someone like Eden. There was no overriding argument or ‘abstract’ that I wanted to deliver and there most definitely wasn’t any coherent discourse on care. Instead what there was was what there was: a song and dance with intermittent moving image sequences, which sometimes helped me and sometimes hindered me. I wanted to make tangible a metaphor to better illustrate what it was (is) like to live with someone like Eden. Imagine that someone or something is constantly pulling at one’s sleeve as one moves forwards through time and space, imagine that the pressure is not too uncomfortable but it is most definitely not comfortable but also imagine

232

Discourses of Care

that the slight tugging or pulling goes on and on. The longer it goes on the more uncomfortable it becomes, but by then one has become reasonably comfortable with the uncomfortable and in my particular situation one has learnt to live with the uncomfortable as an ongoing irritant and hindrance and when it is not there then an overwhelming sense of liberation yet guilt is experienced. In fact, in conclusion, what I’ve learnt is that I’m only ever truly comfortable with the uncomfortable. Having revisited the performance, I offer hereunder an amended paper which is designed to be read rather than performed and which might perhaps with hindsight be seen as a more controlled collage and bombardment of ideas. NB: Eden presented work with me in December 2018 around the themes of ‘Exploring the Lived Experience’ at the De La Warr Pavilion as part of a conference involving collaboration, non-verbal communication, institutional empathy and the practice of artists with complex needs. She was on a stage in front of 200 people and decided that she wanted to conclude our presentation by singing along to I’m Only Human. A collaboration in which she managed to ventriloquize both myself and Rag & Bone Man, perhaps truer and closer to anything that I might have attempted to articulate myself (Figure 12.1). Diary entry 7th April 1988: Leila induced last night @ 5.4cm 11.45pm – A baby girl was born – emergency cesarean section – delivered by Doctor Fish – 8lbs 10ozs – food pumped directly into her stomach – doctors concerned that baby is not behaving normally. Later. A church step somewhere in the French Pyrenees. Medieval. Archival. On a day so hot I was worried that the top of her head might burn off. Eden, a daughter. Eden, a catalyst for my new beginning. Life before Eden and life after Eden. What was to become of me? Us? Her Joubert Syndrome meant that she was missing a bit of her cerebellum. Her vermis. Some brains. I’d finished at the University and the thing that is the wholeoflife was in front of me. Us. And this remembering like the urge to tongue a wobbly milk tooth. Consuming. It takes me right back to when things are never that clear.

B is for … Body

233

Figure 12.1  ‘Perched on the church steps. Barely two years old’. Eden and Andrew Kötting. Courtesy Andrew Kötting. Not then. Not now. They never were. Are. But. There it is. There you have it. In the picture. In the frame. Fairly full to overflowing with the pain, of the notknowing. The philosophical, physiological, biological and historical pain of notknowing. Those elements, those autobiographical components that inform the whole. The corpus. Her body. My body.

234

Discourses of Care

The remembrances leap out at me again. Comes the pain, come to remind me of the heaviness of my step upon realising that the diagnosis for her condition meant that her life expectancy was not good. Was not long. She might soon be gone. Dead and buried. Thus; There she is. Was. Perched on the church steps. Barely two years old. Top girl on the top step, about to topple over. She leans into me and I kiss her. My kisses prevent her from falling. Falling back into the ambition and naïve determination to keep going. Me, thus combatting the notknowing. This photograph, mysterious and potent, rendered into the very fabric of my existence. The pebble-dash of life. What do I do? I keep looking at my own life from different angles, keep trying to find new metaphors for the self and family. Poetry from documentary. Home movie from the mundanity with always the possibility of alchemy. Something might yet come of this. The keeptrying, the keeplooking, the keepremembering. Memory, around which the self orbits. B is for … the beginning B is for … Body both vessel and votive, subjective and objective. B is for … Being and the layered reading of territories, urban or otherwise, via signs of all kinds and without prejudice. C is for care and caring, consumer and consumption. D is for … Difference and the ‘work’ as a different engine. A vehicle into ‘otherness’ and revelation – aesthetically, bodily, mentally. D is for a discourse on self-preservation. E is for … Experimental and an attempt to excavate oneself. E is for the Garden of Eden. A is also for autobiographical representations and memories. So

B is for … Body

235

What does it mean to make work about oneself? What does it mean to talk about oneself? To what degree is this, a solipsistic act? To what degree are we all solipsists? And to what degree has solipsism allowed us access to the world?

The articulation of coherent intention when dealing with Eden can sometimes feel gratuitous and forced. She is unfathomable and frustrating, irritating and tiring, she is overwhelming and inspiring, life stopping and life enhancing. She is an enigma and antidote to the dogma of religion and superstition. She is real and not invented. She is needful every day of her life, from the minute she can’t get herself up until the last thing at night when she can’t put herself to bed. Nothing is EVER taken for granted with her. Nothing is ever assumed. Nothing is ever easy. Her mother, my lover and partner Leila, and myself, grab at moments in time – all the TIME we are with her. They are slippery and non-linear. AND as if that wasn’t enough, there’s the repetition, the looping, the saying the same thing again and again and again – the saying of the same thing again and again and again: What am I doing today daddy? What’s for breakfast daddy? What are we going to do now daddy? Can you tighten my bra please daddy? Can you put on my trousers please daddy? Undo my dress please daddy? Pull my pants up please daddy? What are we going to do now daddy? Can I have some music please daddy? What music is it daddy? I’m hot daddy. I only want a tee shirt on today please daddy. (Even if it’s snowing) What am I doing today daddy? What’s for breakfast daddy? My bra’s too tight daddy. Can you help undo my trousers please daddy? What are we going to do now daddy?

Followed by I’m happy happy happy We are stuck in some Beckettian NIGHTMARE with repetition as a demonstration of the many becoming the one, with the one never fully resolved because of the

236

Discourses of Care

many that continue to impinge upon the one. It is also very dangerous because it can drive you round the bend. Resolution and conclusion are inherent in a plot-driven narrative. However, in real life there is no PLOT, we are hanging on by the seat of our pants, waiting to see what might happen next. Thus since there was Eden there is no longer a history, just autobiography. I draw heavily upon the nostalgia and fog of our own saga. I make work about it. I make work from it. But the whole content of my being shrieks with contradiction when trying to discuss HER. I love it. She makes me feel real. She makes me feel alone. Sometimes I have no idea what there is to say to her. Nevertheless I MUST work with her in an attempt to placate my insanity. I need her but not as much as she needs me. She is oblivious to the woes of the world, politics, economics and blight. I am the malcontent not her. And she is sensitive to mood swings and has ears like a bats, she picks things up, she feels things and she is canny in her manipulation of US. When I was younger I was full of hope that one day I might be able to glean what goes on in her head. I made a short film, which explored this, I pictured the cacophony as a hoi polloi. I called the film HOI POLLOI. Inside her head and the remote Pyrenean landscape in which the film was set became metaphor for both inscape and landscape. We were young and we had no idea what we were doing; still don’t! Consciously or unconsciously we manipulate our memories to include or omit certain aspects of our lives. Every documentary film, even the least self-referential, demonstrates in every frame that an artist’s chief material is himself. It is an excavation of oneself. And it’s always difficult to separate what happened from what seemed to happen. Memory is the past rewritten in the direction of feeling and anything processed by memory is fiction. Therefore our memories are fictions. I’m interested in the generic edge – the thin membrane between what might be called fiction and non-fiction – but I draw from the real to make an ‘unreal’ or ‘ethereal’. And my head used to be full of questions; What does it mean to set another person in front of the camera? Am I not trying to extract something from their soul? When am I exploiting? When am I exploring? When am I adoring?

B is for … Body

237

Is it one and the same? Is it not impossible to do both? Is it not the truth of human relationships? Will she ever be able to form words that relate to her inner world, her inscape?

Today I return to the same question, again and again; will I ever truly know her? My work doesn’t resolve any of these questions; it just breeds more, many of which I ignore. There are implied narratives afoot, but they are not complete. They are in flux despite having been worked on for years. They are shoddy and incomplete; they are the work of a second-hand thinker (see Figures 12.2, 12.3 and 12.4). I believe in the arts as a type of knowledge. I believe in science as knowledge. I believe in religion as superstition and myth, which is no longer necessary, more of an encumbrance and form of lazy delegation. Artistic Truth has laid its foundations on dodgy ground whereas Scientific Truth has something definitive to say. It is true, for example, that the earth moves around the sun, or that black holes are very black. Whereas to say that Eden is a better painter than Jackson Pollock or vice versa is not a verifiable proposition but an OPINION, and this remains so even if the overwhelming majority of the population don’t share it. Even if it’s just ME. The progress of science is at the expense of its past mistakes, which might cease to have any relevance and become defunct or a footnote to the history of

Figure 12.2  Eden at age two, on a bench with daddy. Courtesy of Andrew Kötting.

238

Discourses of Care

Figure 12.3  Eden at age twelve, on a bench with daddy. Courtesy of Andrew Kötting.

Figure 12.4 ‘Mapping Perception’. Courtesy of Andrew Kötting (Editor’s note: ‘Mapping Perception’ was a four-year collaboration between curator and producer, Giles Lane, Andrew Kötting and neurophysiologist, Dr Mark Lythgoe, with the participation of Eden Kötting. The project examined ‘the limits of human perception through an investigation of impaired brain function, making visible the connections between scientific and artistic explorations of the human condition, probing the thin membrane between the abled and the disabled’ [http​://pr​obosc​is.or​g.uk/​mappi​ngper​ cepti​on/].​

B is for … Body

239

science. Whereas, there are no wrong answers in Artistic Truth because there are no right questions, and past mistakes don’t matter because the present does not displace them. It incorporates them and celebrates them. It can even revere them. The discourse around the arts is huge. It is as large as humanity and as extensive as the imagination. With art anything is possible, and sometimes despite its inferior status it might even help as much as science can help. And what’s more anyone can do it. Not so with science. Believing that the Arts can HELP to make people ‘better’ goes way back to classical times. Aristotle mooted that music was character forming and that it should be introduced into the education of the young: When one listens to music our souls undergo a change, he said, a transformation, it arouses moral qualities, but he also went on to say that it must be the ‘right sort of music’. The wrong sort of music, particularly that of the flute, might prove too exciting or too tempting for both children and slaves, which was just too ‘vulgarizing’. Plato, of course, thought that the Arts just made people worse, unlike Reason and Science. The Arts were way off the mark when it came to the TRUTH. At best they were only a form of sport or mucking about and besides their encouragement of the passions flew in the face of the principles of the SOUL. So when arranging human souls into nine grades, Plato put philosophers at the top, tyrants at the bottom and artists at number six, just above artisans and farmers. He does, however, make an exception for musicians (provided that the music they make is virtuous and not intended for children and slaves), in which case they came in at number five. Meantime, Shelley claimed that poets were the founders of civilized society, because ‘they nurture the imagination which is the great instrument of moral good’. But according to John Carey and his insightful What Good Are the Arts?, analysing a work of art using ‘rules’ is like trying to do a jigsaw puzzle using a forklift truck. Better to just leave it all alone? So go tell the story of your life, it might prove difficult but probably emotionally cathartic. And surely by covering the story that you can remember, it is the same as covering the ‘real story’? And if one’s life is so entwined with THE CARE of somebody else and there is no obvious separation, then it is probably easier to pull on THE WHOLE rather than attempting to demarcate the two. Maybe it is even a device for holding THE WHOLE thing together. Conventional narrative teaches the reader that life is a coherent, fathomable totality that concludes in a neatly wrapped-up REVELATION or climax. But it

240

Discourses of Care

is not real life. Life is full of the stuff that flies at us in bright splinters. It is full of cut-ups, blip-verts and misunderstandings. It is a mosaic, deprived of wholes but FULL of parts. And everything I have ever made with Eden is a form of collage – it is just a matter of adjacent ideas and conflicting voices. The trained and the untrained. The coherent and the incoherent. This very chapter is a pasting of ideas, an approximation of things that I’d like to say but don’t have the plot to hang it on. The altar of plot? Perhaps plots are for dead people? Whereas collage is pieces of ‘other’ things. Collage demands fragmented materials, often misaligned and even out of context. Collage is an accentuated act of editing, picking through options and presenting a new configuration, albeit one that is never smooth and complete within the ‘traditional’ sense. The act of collaging might even prove the key to the post-modern predicament; it might even be the present-day nonbinary norm! AND the gaps between the paragraphs, the silence between the NOISE are equally as important It is about the attempting-to-make rather than the finished product. The getting-lost-en-route rather than the arrival. I’m now mindful of Project Art Works who are based in Hastings and operate out of a converted railway arch. Eden and I have been with them for over ten years. Kate Adams founded the organization with Jon Cole many moons back. She is a remarkable human being. (Jon sadly died a few years ago, although his love of dub reggae still infects a lot of the atmospheres of my work.) They had a naïve vision: to set up an artist-led organization that provides a safe haven for adults with special needs, a sanctuary for ambitious creativity, a place that’s inspiring and inspired, a place that takes itself and its users seriously and asks questions of them. It was a massive undertaking and if they’d listened to the financiers, bureaucrats and naysayers you would have been convinced that it was destined to fail. In fact you’d never have bothered. But they pulled it off. They channelled all of their energies and wisdom into it and something magical emerged that has affected, infected and effected the lives of thousands of people. Kate’s ability to articulate the complex issues around creativity and disability is key; it comes from her own personal experience and not from abstract theory. It is empirical. She is the mother of a child, now man, with complex needs, and it is this that honed her knowledge and sensitivity to the ethical issues arising from

B is for … Body

241

the inclusion of people, who cannot knowingly consent to their involvement in art and culture. Her son Paul, like many of the people at Project Art Works, does not use language to communicate, and yet his interaction is expansive rather than reductive, through the utilization of gesture, sound, signing and empathy. B is for being human. As I write this Eden careers in from the studio in France to declare that she is happy happy happy – AGAIN but that her bra is too tight. She wants me to take it off. It is hot hot hot in the mountains this time of year. She is busy on a new BODY of work based on the arrow that was shot into King Harold’s eye – her Motown Greatest Hits CD is playing very loudly. This IS biography and it is very hard to concentrate. Art is NOT truth. Art is a lie that enables us to recognize truth. My art is a haphazard assemblage of parts – parts that seem to fit. But unlike Kate Adams I am too selfish and my sanity too precarious to dedicate as much time to so many others. Eden’s SYNTAX is a tree-like structure, spreading out from a combination of limited root words and ideas that she tries to express. It grows very slowly. It’s a shadow that hangs over me. With her all is contingent. All is up for grabs and I’m left with a wonderful acceptance of all things being an approximation, things are never black and white, always axial, and this succours me, it satisfies me. It’s a feeling that I have Eden to thank for. If Eden wasn’t interested in drawing and painting and collaging then I think I would have killed myself by now. She is my therapy and I am her therapist. We help each other. We spend time together. We make work together. We blunder onwards together. We care for each other. What else is art but the public sharing of intensely personal experiences or ideas? Titular attempts at implied text-driven narratives or am I just hiding behind Eden’s innocence and lack of understanding? Am I just too ill-equipped or under-committed to the task of addressing the subject head on, politically, philosophically and intellectually? Like too many of my kind I leave the elephant alone in the room. I’m safe in my bubble of concern. I’m just too frightened of … IT … THEM – and I don’t know how to confront it, them. So I seek solace in the lame excuse that the purpose of art is to lay bare the questions hidden by the answers. Don’t talk unless you can undermine the cacophony. So we grab at what’s to hand. Luckily Eden is always to hand.

242

Discourses of Care

I’ve been corrupted by the notknowing. It continues to feed my way of being – the unfathomability of it all. A film-maker friend, Glenn, came round for lunch last summer and was fascinated by Eden’s drawings; he asked whether he might try animating some of them. He did and they worked brilliantly. I posted them on Eden’s website. People emailed to say how much they enjoyed them. Out of this experience a new relationship grew for Eden. She loved Glenn’s attentions. She loved the fact that her drawings moved. And as a result we were commissioned to make a three-minute film for Channel 4’s Random Acts. Eden liked the process, the meetings in which I had to translate for her. The technicians involved with the grading and mixing of the film. The runners that presented her with whatever food she wanted. Glenn was proud of the end result too. But Eden was HAPPY HAPPY HAPPY and as high as a kite on coca cola and crisps. I was over-the-moon. And yet at no point, on her part, were any aesthetic or conceptual choices made. Her drawings had somehow been brought to life. She recognized her own voice and the liveliness of her drawings, but beyond that it was of no importance to her. It was just something creative and different going on in her life. She’s outside of any system of self-worth. And yet she feels it when something she has done is GOOD. Eden has often been described as an outsider artist, a label created by French painter Jean Dubuffet to describe art created outside of the boundaries of official culture. He focused on the art produced by those away from the established art scene, such as psychiatric hospitals, patients and children. Perhaps Eden is outside of herself and outside of all systems; she is living in the moment, in the moment of now, the moment of waiting for the now. But I’m not because I’m an insider artist and I have corrupted her and guided her, thus creating a tension that drives and thwarts my own artistic endeavour. The end results are precarious and sometimes potent. I’ve become an aesthetic arbitrator of what is good or what is bad, a role that I am both comfortable and uncomfortable about, but this is a role that she depends upon, something that she was born into and something that comforts and reassures her. The marks that she makes I see as ready-mades, things that when re-positioned or ‘arranged’ begin to take on a new meaning or importance. A shapely swirl of energy holding shattered fragments together, but only just. And in particular over the last five years we’ve started to introduce maxims or texts, which imply BIGGER significance or existential relevance. They are the

B is for … Body

243

ideas that I’m pondering at the time and they relate directly to projects that I might be working on. And in this way the two become entwined and I have the patience to continue. Eden likes to write on her drawings and paintings, they might appear as titles but invariably they provoke a reaction; it’s as if an INSIDER has subverted the innocence of the OUTSIDER. He has. He’s looking for a new meaning, he’s reverse engineering in an attempt to create PUNCTUM. If we’re lucky it works and something pricks. When we are not sure we are truly alive. Eden reminds me that I’m not sure most of the time and yet she makes me go on. I blunder on and I wouldn’t be here today if there wasn’t some grandiose idea within all the confusion that I had any notion at all of what I might be saying. She makes me do it and through the act of doing it, intermittently, I feel as if I might be getting somewhere. To the heart of the matter via the consequences of pragmatism. This might be seen as an essay on existentialism and isolationism. A manifesto under the guise of some home truths or moreover a tribute to the voices in the head. And we are not alone. On returning a few days ago from our summer sojourn I was reminded of how VITAL our care mechanism for Eden is. We have a team of support workers that we employ five days a week. They each have skills that they bring to her life as they too encourage and cajole her into dressing, drumming, dancing, horse riding, swimming, painting, yoga, singing, signing and shopping. Without them we would be lost. Eden would flounder around within the institutions and day centres that manage their charges across the country. They too have their own agenda and discourse of care, but it is more about containing, more about fire fighting and time wasting. They are committed and hardworking but with no particular objective outcomes. You either measure activity, which is easy, or you measure impact, which is harder. As one of the principle carers for my own daughter, I’m only really concerned about her quality of life and her well-being; the art is secondary and probably more a result of my own ego and its need for recognition. But art has installed in Eden a sense of worth and achievement far greater than I could ever have imagined. So I’m mindful of what I said at the beginning of this chapter but I can’t help thinking that in neurological terms there is a special link between the hypothalamus and the temporal cortex with its stored schema of visual representation. I therefore

244

Discourses of Care

feel that it is reasonable to conclude that some of these connections are specific to certain synaptic alignments thus encoding a particular visual memory – but I won’t. Instead by way of conclusion I offer you this: E is for Experimental and E is for Eden. From the garden and back again. And the fact of Eden. And the unique insights that she has brought to my life and the work that we have made. Eden, as daughter, agent, collaborator and catalyst. Eden as moral compass offering thresholds for ventures into the very core of consciousness and perception. Eden as a Journey into the unknown. Without her I am both freed and lost.

Call me naïve; call the hereabove a tautology but ART can give you a flavour, a trace element or smidgeon, an atmosphere or even an insight into what being alive with somebody like Eden means. And that concludes my outburst on the discourse of CARE. Andrew Kötting – January 2019

13

Care as practice and provocation A response to Andrew Kötting Amy Holdsworth

‘What does it feel like to care for someone like Eden? Imagine someone pulling at one’s sleeve …’ Andrew Kötting leans over the table and gently but firmly pulls on my arm. The pressure is enough to feel weighted down, tethered, but when he lets go there is both lightness and loss. It is a sensation I recognize – the weight of holding up a body, the strain on the neck and shoulders. The release of setting that body down – the unclenching of tensed muscles and straightening of the spine accompanied by a lingering ache. It’s September 2016 and I’ve met with Kötting for a coffee the day after our Discourses of Care conference in the cafe at the Kelvingrove Art Gallery and Museum in Glasgow. We talk about his work, as artist and teacher, his relationship with Eden and I share the story of my younger sister, Alice. Alice had Rett Syndrome, a neurodevelopmental disorder resulting in a series of cognitive and physical impairments. She couldn’t walk unaided so we used to hold her up under her arms as she’d kick her feet out in erratic steps forward. As she got older, she got heavier and the curvature of her spine became so severe that these tiny expeditions – from chair to television, from garden to door – had to stop. As Kötting pulls on my arm, the weight of holding up (or being held down) by Alice’s body is what I recall. In this gesture and in his writing Kötting summons the embodied experience of loving, caring for and creating with Eden as being an anchor alongside the ambivalence that this implies. ‘Without her’, he acknowledges in his chapter for this collection, ‘I am both freed and lost.’ I first encountered Kötting’s work when acting as a graduate teaching assistant for a course on the road movie in which we studied Gallivant (1996). The film charts Kötting’s clockwise journey around mainland Britain alongside his octogenarian grandmother, Gladys, and his daughter Eden (then six years

246

Discourses of Care

old). In Eden I saw signs of Alice, her specialist boots, the use of Makaton to communicate, her joy of silliness and the unbridled laughter. I also recognized the anxiety of loving and caring for a child with a life-shortening condition, what Kötting describes as the notknowing, though, following Alice’s death at the age of sixteen in 2002, I was now living on the other side of it. In Carlo Caduff ’s essay on the ambiguities of care he draws upon a series of literary examples centred on the act of giving care to an elderly or ill parent. ‘When people start looking after their elderly mother or father’, he writes, ‘they discover the weight of a body. That body has always been there; it has always been close. One has seen it many times, but now one has to physically move it. To care for someone known is to discover how little one knew’ (2019: 803). What is it like to care for someone like Eden or Alice? The weight of a body doesn’t come as a surprise, but, in Kötting’s terms, it is accompanied by different kinds of notknowing: The notknowing of ‘raising’ a child with a life-shortening condition and the anxiety of the routes her life might take or the ways in which her body might, or might not, develop. The notknowing of simply what is going on in her head. As Eva Feder Kittay has explored in her writing informed by her experiences of caring for her daughter with cognitive disabilities, caring for someone with a developmental impairment demands a rethinking of our understanding of human subjectivity and communication. But we might also recognize, as Carlo Caduff observes, ‘relations of care always involve a level of strangeness, no matter how close the relation’ (2019: 803). This short chapter offers a response to and a reflection on the words and work of Andrew Kötting, focusing in particular on two of his films – Gallivant and This Our Still Life (2011). Like the circles and spirals that underpin his filmic work, Kötting’s contribution to this collection also loops through a series of discourses surrounding art, autobiography, creativity, communication and subjectivity, and while I will touch on each of these I want to reflect on and filter these ideas through particular understandings, experiences and discourses of care and caregiving that highlight – like Kötting’s own account of living with Eden – the tensions and ambivalences of ‘living with the erratic’ (Mol, Moser and Pols 2010: 10). In drawing upon Caduff ’s essay and his challenge to the kinds of embodied knowledge that are offered as evidence of care, what I want to suggest is how Kötting’s own work, created out of these uncertainties, might point us in the direction of a possible aesthetic of care. In Kötting’s chapter he describes his work and his collaborations with Eden as a way of ‘combatting the notknowing’ that he experiences, his preoccupations

Care as Practice and Provocation

247

with memory, tradition and family born out of a sense or fear of impending loss. Gallivant, made when Eden was still young, is explicit in its aims and intentions, acknowledging the limited life expectancy of both Gladys and Eden while offering the opportunity for great-grandmother and great-granddaughter to get to know one another – as Kötting’s voice-over explains the gallivant taken offered them ‘a coming together before going our separate ways’. I have written elsewhere, alongside my co-editor Karen Lury, of the significance of the relationship between old and young for the caring relations that are visible on and through children’s television (Holdsworth and Lury, 2016). The seaside, in this context, is a privileged site for this coming together of generations. Iain Sinclair also recognizes this in his essay on Kötting’s film: ‘this is a homage to that archetypal home movie, the seaside excursion. The day out, remission from mundane routine. Time for putting together oldest and youngest members of the family for the hell of that British togetherness’ (1997: 20). In line with this tradition Gallivant starts and ends in Bexhill-on-Sea on the South Coast of England: the site, as Gladys tells Eden, of her daddy’s own boyhood holidays. And so the film looks to the continuity of tradition in the face of the notknowing. Sinclair describes the journey taken in Gallivant as ‘a memorial, a premature obituary. It allows Kötting to come to terms with the inevitable’(1997: 21). Coming to terms though suggests some kind of conclusion, acceptance or an end to the journey and Gallivant instead is steeped in a series of circular, repetitive and looping patterns. The familial traditions of the Kötting family are situated alongside a host of local, regional and national festivities, habits and behaviours. On their way, Kötting and his band of travellers encounter and document a series of festivals, celebrations and commemorations: the ‘Bolster day’ celebrations in St Agnes, Cornwall (in which giant paper maché puppets and a young maid clad in white re-enact the Cornish myth of Bolster the Giant and St Agnes); a ‘Jack in the Green’ May day parade in Hastings; a ‘Remembrance Sunday’ ceremony in November. The mapping of the coast uncovers numerous examples of folklore, song and dance passed down through the years: in Whitehaven, two local men play and sing ‘D’ye ken John Peel’ (a folk song about a legendary Cumberland huntsman) and the intertwining of Viking and mining heritage is invoked in a rapper sword dance performed in North East England. In her writing on historical re-enactment, Diana Taylor describes such performances as a ‘constant state of againness’ (2003: 21) and the circularity that marks this particular road movie is mirrored in the repetitive motions, actions and scenes that make up the film. Waves crashing backwards and

248

Discourses of Care

forwards on the shore, a stream of tourists taking their turn at a viewpoint, a camera that continually spins and turns, loops and spirals. Life with Eden is also experienced, in part, as a ‘constant state of againness’ and, as Kötting writes and his films document, the ‘saying of the same thing again and again and again’. The non-linearity that is evident in the theme and form of Gallivant offers an early articulation of the experience of living and collaborating with Eden that Kötting describes in his chapter for this collection. It is worth noting that ‘again and again’ does not always imply perfect (or perhaps nightmarish) repetition but is suggestive of the more iterative aspects of care that Annemarie Mols, Ingunn Moser and Jeannette Pols describe as a matter of ‘practical tinkering, of attentive experimentation’ (2010: 13). Other themes emerge in Gallivant that also point towards the pain and privilege of this experience and to the continued ambiguities of care and caregiving. Modes and technologies of communication recur across the film (train tracks, telephone lines, satellites, post boxes, phone boxes) and Kötting foregrounds Eden’s use of Makaton sign language to communicate. The tender growth of Gladys’ relationship with Eden is charted in the development of her understanding of her great-granddaughter’s use of Makaton. At the end of their journey, framed together on the beach at Bexhill and wearing matching bright red coats, Gladys proudly informs her grandson that Eden is coming back to live with her. This world is a precarious one, however, and in celebrating a moment of connection the film is as aware of train lines that diverge, coasts that erode, inhospitable interviewees and disconnected phone calls back home. Kötting’s own shattered ankle, sustained when falling from the side of their van, is evidence of the contingent nature of the project and the spectre of the notknowing that lurks behind the ruins, graves, pollution and erosion of land and communities encountered on their coastal path. Kötting’s work and collaborations are collagist in nature, often composed from a range of sources including found footage and sound, recorded performances and home-movie archive. Films such as Gallivant or This Our Still Life are composed of an often haphazard and contingent set of images, sounds, voices and bodies that are pieced together and, in the best tradition of montage, are always understood and produce meaning in relation to one another. The significance of collage, for Kötting, though is in the ‘attempting-to-make’ and the ‘getting-lost-en-route’; it is a form that emphasizes the process rather than the product or finished result. In this sense, collage is reminiscent of care. Never smooth and complete, ‘in the scene of care’, Caduff writes, ‘things fall apart,

Care as Practice and Provocation

249

collapse more often than not, get stitched together piece by piece, however provisionally, however precariously’ (2019: 790). Framed in this way Kötting’s work and his collaborations with his daughter Eden – as subject, performer and artist in her own right – perhaps bring us close to a possible aesthetics of care. Kötting’s contribution to this collection offers us an account of the challenges and affirmations of raising, caring for and creating with Eden but also emphasizes how he has been shaped and sustained by their interdependency. Joan Tronto has suggested that care can be understood as both a practice and a disposition (1993: 104). In this sense it could be seen as a particular quality of mind and character (to have a ‘caring disposition’, for instance) but another sense of the word seems equally applicable – for example, a disposition of objects refers to ‘the pattern in which they are arranged or their positions in relation to one another’ (Collins Dictionary). It is the second use of this term that foregrounds the significance of relationality to an ethics of care, but it also evokes the formal properties of the collage and the piecing and re-piecing of parts together. Through the processual nature of their art and practice Andrew and Eden are positioned together in both care and in creative collaboration. This Our Still Life deploys a similar aesthetic and is ‘stitched together piece by piece’ from archival images and sound alongside footage shot by Kötting of his family (Eden and partner Leila) at their home in the French Pyrenees between 1989 and 2010. Like Gallivant, the film is cyclical in form. Though tethered to a particular place it employs a seasonal structure that starts and ends with summer, while looping forwards and backwards in time to offer a portrait of Eden as both child and young woman. That documentary impulse instigated by the same sense of the notknowing is also still present: the recording and preservation of family memory through the home video, the threat of impending loss and the challenge of Eden’s unfathomability. In response Kötting’s camera maps and scrutinizes as he conducts his own form of ‘attentive experimentation’. It slowly tracks across the shelves and walls of the farmhouse where paintings, photographs, trinkets and souvenirs both found and created adorn almost every available surface. The aesthetic of the house itself is collagist, fragmentary, provisional, memorial and mirrors that of the film. Kötting’s camera is similarly invested in its inhabitants at times moving to extreme close-up across the contours of Eden’s face or catching the intimacies of Leila’s bath time.1 It watches and it waits – hovering in the grounds at dusk looking back at the lights and movements within the home. In Agnese Sile’s contribution to this collection she considers the overlapping work of Briony Campbell as both photographer and daughter within the scene

250

Discourses of Care

of (palliative) care and describes the attentiveness that each role requires. For Sile, care and concern are expressed through the vigilance of Campbell in her dual role – being with, witnessing and standing guard over her father. Attentiveness has been central to understandings of care and how we recognize and respond to the needs of others (in both caring and being cared for). At the same time, discourses of care have relied upon an attentiveness to embodied forms of knowledge and ‘small moments’ to evidence the existence of care. As Caduff writes, ‘[C]are finds its expression in minimal movements, in episodic signs and gestures’ (2019: 788). He argues that the very real possibility of ‘care without care’ instigates a ‘search for clues’ whereby a ‘feeling’s expression in signs and gestures is here supposed to solve the problem of scepticism’ (2019: 798). Caduff takes as his ammunition the ‘idealized’ image deployed by sociologists Mol, Moser and Pols of the kinds of expressive language used to describe care: ‘putting a hand on an arm at just the right moment, or jointly drinking hot chocolate while chatting about nothing in particular’ (2010: 10). But hot chocolate, as Caduff points out, can equally comfort and scald. The ambivalences of care, the possibility that care as practice, affect and value might not always align, are what makes it such a complex and complicated field of enquiry and one of the central aims of this collection has been to acknowledge the different ways in which care is performed, understood, debated, represented, enacted or neglected. Kötting’s pull on the sleeve is clearly an example of the kind of embodied knowledge used to express feelings and experiences of care. It is one that, as I’ve attempted to unpick, is complex in its anchoring effect – to be securely moored or stuck in one spot, the freedom to move or being cast adrift. It is also specific in its context and the caring relations that it expresses as it speaks to the value of attentiveness and embodied knowledge beyond Caduff ’s critique of the warm and fuzzy gestures of care. For instance, ‘the close attentive eye’, Feder Kittay writes, ‘is needed to care for a dependent individual’ with cognitive disabilities. It gives rise to ‘perceptual capabilities that are not shared by those who have at best a glancing acquaintance’ (2010: 406). It is this attentiveness that is needed to develop and understand forms of communication that exist beyond our normative ideas of how individuals think and feel but also to value those ‘small’ pleasures, moments and movements within the ordinary affective realm. It is these everyday and routine occurrences that form much of This Our Still Life. We see Eden washing up while loudly singing along to the radio, painting at the kitchen table, beside herself with laughter at her father’s games and jokes,

Care as Practice and Provocation

251

miserable and uncomfortable in the heavy mountain rain as she peeks out from under her raincoat. In theatre practitioner James Thompson’s essay on the aesthetics of care he also returns to the notion of attentiveness as found both in writing on the ethics of care and as existing at the heart of the creative process. An aesthetics of care, he argues, is ‘a sensory ethical practice, that following [Fiona] Robinson, involves “not only learning how to be attentive and patient, how to listen and respond, but also how to rethink our own attitudes about difference and exclusion”’ (2015: 437). Beyond the immediate sphere of the family, the work of Andrew and Eden Kötting and their collaborators is invested in combatting a different kind of notknowing – one which excludes and marginalizes the lives, stories, experiences and skills of people with learning disabilities as they ask us to ‘rethink our attitudes about difference’. Not knowing may mean realizing that we actually know nothing, and it speaks to the forms of epistemic injustice that Amanda Ptolomey (drawing on Miranda Fricker’s theorization) argues shapes the lives of disabled girls (2018). This is not about reshaping a life to fit the mould but involves a perhaps more radical desire to express the strange and the banal, tiring and invigorating experience of life with/as Eden and to experiment and play with our means of expression. As Anna Poletti argues, the possibilities of collage to challenge our ideas about the representation of our life stories have made it ‘a powerful technique for life writers who aim to produce life narrative while responding to the normative ideas about life that underpin the autobiographical speaking position’ (2016: 362). In its challenge to the linearity of dominant (life) narrative forms, the Köttings’s work contributes to the questioning of those normative modes and ideals that continue to restrict our understandings of human experience. The aim of this chapter has not been to suggest that there is a singular aesthetic of care, just as care itself is diverse, complicated and contested. Collage offers one particular strategy that chimes with an intertwined experience of caring and creating within ‘the everyday life of an artistically productive family’ (Hughes 2017: 283). What Kötting enables us to understand is the centrality of care within the creative process. As a (auto)biographical experience that informs the work of art, as an arrangement of human relations, and as a way of visualizing and making sense of (or attempting to make sense of) the world. Care here is both provocation and practice. Through Kötting’s works, words and world we are offered an illustration of the complexities and contradictions of care and caregiving as messy, ongoing, mundane, sustaining and, above all, most vital.

252

Discourses of Care

Note 1 It is important to note here the legacy of documentary as a form of oppression for people with disabilities who have long been objectified by a medical gaze. It is a history that Kötting explores in the collaborative project Mapping Perception (an image from which features on the cover of this book). This project was underpinned by the desire to understand Eden’s subjectivity by using film as an experimental art form (see Hughes 2017: 279).

References Caduff, C. (2019), ‘Hot Chocolate’, Critical Inquiry, 45: 787–803. Holdsworth, A and K. Lury (2016), ‘Growing up and growing old with television: Peripheral viewers and the centrality of care’, Screen, 57 (2): 184–96. Hughes, H. (2017), ‘On Andrew Kötting’s Mapping Perception’, in C. Brylla and H. Hughes (eds), Documentary and Disability, 275–89, Basingstoke: Palgrave. Kittay, E. F. (2010), ‘The personal is philosophical is political: A philosopher and mother of a cognitively disabled person sends notes from the battlefield,’ in E. F. Kittay and L. Carlson (eds), Cognitive Disability and Its Challenge to Moral Philosophy, 393–413, Malden, MA: Wiley-Blackwell. Mol, A., I. Moser and J. Pols, eds (2010), Care in Practice: On Tinkering in Clinics, Homes and Farms, Bielefeld: Transcript. Poletti, A. (2016), ‘Periperformative life narrative: Queer collages’, GLQ: A Journal of Lesbian and Gay Studies, 22 (3): 359–79. Ptolomey, A. (2018), ‘What might we be missing? Reflecting on the absence of disabled girls in girls’ studies theory and practice’. Presented at XVII Annual Conference of Youth Studies, University of Helsinki, Finland, 5–6 November 2018. Available online: https​://ww​w.res​earch​gate.​net/p​ublic​ation​/3342​30122​_What​_migh​t_we_​be_mi​ssing_​ Refl​ectin​g_on_​the_a​bsenc​e_of_​disab​led_g​irls_​in_gi​rls_s​tudie​s_the​ory_a​nd_pr​actic​e/ (accessed 19 August 2019). Sinclair, I. (1997), ‘Big granny and little Eden’, Sight and Sound, 7 (9): 19–21. Taylor, D. (2003), The Archive and the Repertoire: Performing Cultural Memory in the Americas, Durham: Duke University Press. Thompson, J. (2015), ‘Towards an aesthetics of care’, Research in Drama Education: The Journal of Applied Theatre and Performance, 20 (4): 430–41. Tronto, J. C. (1993), Moral Boundaries: A Political Argument for an Ethic of Care, London: Routledge.

Index Aaron, Michele  24 Abrams, Lynn  126 Accessible Media Inc. (AMI)  104, 105 Adams, Kate  240, 241 AIDS  162, 163, 166, 167 AIDS, a History without End/SIDA, une histoire qui n’a pas de fin (1993)  167, 168 Amber Films  172, 173, 178, 179, 180, 181, 182, 185 amblyopia  156 ‘animal caretakers’  87 Ariès, Philippe  53–4, 194 asperger’s syndrome  112 ‘assisted dying’  21, 34, 35 Association of Cinematograph and Television Technicians (ACTT)  173, 181 Attention Deficit Hyperactivity Disorder (ADHD)  112 Attwood, Tony  118, 121, 122, 124, 125 Audetel Communications Act  107, 108 audio description (AD)  11, 92, 93, 94, 96 ‘autiebiographies’  113, 122, 123, 128 autism  112 Ayre, P.  199, 200, 206 Azoulay, Ariella  54, 134, 147–8 ‘Baby P’  194 Baird, Barbara  197 Balint, Michel  161 Barnes, Marian  5 Barthes, Roland  44–5, 59 Camera Lucida  53 The Battle of the Somme (1916)  137, 146 Battlestar Galactica (TV series 2004–2009)  64 Batut, Arthur  42 BBC  4, 9, 13, 93, 104, 210, 220 producer choice  222–5 producers’ guidelines  25

‘respect at work’  215, 216, 225, 226 ‘values’  213, 214, 215, 219, 223, 226 ‘Be My Eyes’  80 Bergala, Alain  155, 158 Berger, John  41–2 Berry, D.  70 Bettleheim, Bruno  114 Binner, Simon  26, 28, 30 Birt, John  222 Blackman, Lucy  112, 115, 117 Boaden, Helen  217, 222 BodyCapital project  3, 11, 14 Bourke, Joanna  197 British Medical Association (BMA)  173, 177 Brock, Arthur  134, 138, 140 Brooks, Libby  195 BT Sport  93 Bulger, James  196 Burns, Tom  214, 224 Butler, Ellie  194, 201–3, 204, 205, 206 Caduff, Carlo  9, 246, 248–9, 250 Cagney and Lacey (TV series 1982–1988)  62 Campbell, Briony  39, 249, 250 ‘care’ etymology  135 ‘care-full cinema’  150, 152, 164, 166, 169 care in practice (Mol, Moser and Pols)  5, 6, 14, 61, 250 Carey, John  239 Cartwright, Lisa  50–1 Channel 4  5, 93, 95, 96, 104, 173 Chaplin, Charlie  145–6 Cheers (TV series 1982–1993)  60, 62 ‘child fundamentalism’  197 ‘child panic’  195 ‘children at risk’  4 Children Like the Others/ Des enfants comme les autres (1955)  156 Cipriano, Gianni  50

254 Climbié, Victoria  194, 199 Cole, Jon  240 Colwell, Maria  193–4, 200, 205 ‘compassionate cinema’  152, 155–8 A Country Doctor/Un médecin de campagne (1959)  155, 156, 157 Coronation Street (TV series 1960)  22 Couser, G. Thomas  117, 118 Craiglockhart war hospital  138–9, 140, 142 Crick, Michael  221 The Dad Project (2009)  10, 30, 38 The Daily Express (newspaper)  204 The Daily Mail (newspaper)  200, 201 The Daily Record (newspaper)  204 Deacon, Rowan  25, 28, 30, 31, 32, 33, 34 Deal or No Deal? (TV series 2005– 2016)  103 De Falco, Amelia  70, 71, 74, 84 Department of Health and Social Security (DHSS)  177, 178, 184 Department of Work and Pensions (DWP)  178 Diagnostic and Statistical Manual of Mental Disorders (DSM)  114 Di Giovanni, E.  92, 106 Dignitas – la mort sur ordonnance (2010)  22, 24, 25 Douthwaite, Arthur  146 Downing and Saxton  24 Doyen, Eugène  169 Dubuffet, Jean  242 Dyke, Greg  215, 216 Eastenders (TV series 1985)  98, 99 Edinburgh International Television Festival  4 ‘educational media’  12 Ellis, John  27 Emergence: Labeled Autistic (1996)  113, 121 Emmerdale (TV series 1972)  22 ‘engaged cinema’  153, 162–8 ‘enhancing AD project’  103, 104, 105 Entwistle, George  211, 218 The Equalizer (TV Series 1985–1989)  62 ER (TV Series 1994–2009)  58 Ettinger, Bracha L.  42

Index Exposure: the other side of Jimmy Savile (2012)  211 facilitated communication (FC)  115, 117, 118, 119, 120, 123, 124 Fall Down Seven Times, Get Up Eight  113 Farewell to the Welfare State (1985)  176, 177, 178 Feder Kittay, Eva  1, 7, 12, 62, 64, 73, 74, 83–4, 87, 94, 113, 172, 174, 176, 177, 183, 212, 214, 223–4, 246, 250 Fee, Liam  194, 201, 203–5, 206 Fife’s Child Killings: The Untold Story (2017)  204 Fifty Shades of Grey  106 Fleabag (2016–2019)  4 Flusser, Vilém  38 Following Balint/Sur la traces de Balint (1977)  160, 161 Four Corners: My Own Choice (2013)  22, 35 Frank, Arthur W.  43, 44, 52, 55 Frasier (TV series 1993–2004)  5, 60, 61, 62–3, 64, 65 Freaks, Geeks, and Asperger’s Syndrome  113 Freeman, Jonathan  97 French National Educational Film Board  155, 156 Frey, James  116 Fryer, L.  92, 97, 98, 100, 102 Fulton Committee (1966–1968)  173 Furedi, Frank  193, 195–6 Gallivant (1996)  13, 245, 246, 247, 248, 249 Gilbert, Sandra M.  29 Gilman, Sander L.  47 Gladstone, William  177 Gorer, G.  21 Grandin, Temple  113, 116 Griffiths Report (1988)  173 ‘Growing Up and Growing Old’ (Holdsworth and Lury)  22, 61–2, 247 The Guardian newspaper  202 weekend magazine  40 Gunning, Tom  146

Index Hall, Stuart ‘encoding and decoding’  6–8 Happy Families (1988)  185 hard of hearing (HOH)  93 Health and Social Care Delivery Plan (Scotland)  112 Heath, Edward  177 Held, Virginia  223, 224–5 Hendricks, H.  194 Her (2013)  84 The Herald (newspaper)  207 Higashida, Naoki  113, 116 Hills, Adam  96, 97 Hill Street Blues (TV series 1981–1987)  62 Hiroshima Mon Amour (1959)  52 Hogg, Lady Justice  201, 202 How to Die in Oregon (2011)  22, 30 How to Die: Simon’s Choice (2016)  22, 26, 29, 30, 33, 34 How to Say/Comment dire (2013)  164 Hurst, Arthur  11, 133–48 Hutcheon, Michael  135 Hysterical Disorders of War (1918)  140 Illich, Ivan  162 ‘i’m only human’ (song, 2016)  232 The Independent (newspaper)  103, 222 independent television (ITV)  93, 107, 177, 180 integrated described video (IDV)  105 ‘I-voice’  104 Jackson, Luke  113 Job Access With Speech (JAWS)  71 Jones, Meirion  210, 217 Jones, R.  199 joubert syndrome  232 Kiarostami, Abbas  45, 167 Kiri (2018)  197–8 Kleinman, Arthur  38, 41, 52–3 Kötting, Andrew  1, 13, 30, 126, 127, 245, 246, 251 The Lancet  137, 139, 143 Laplanche, Jean  59 The Last Leg (TV series 2012)  96 Laukötter, Anja  3

255

Lévinas, Emmanuel  46 ‘life story’  3 Living With AIDS/Le SIDA, vivre avec (1988)  166, 168 Lopez  94–5, 103–4 Lucy’s Story: Autism and Other Adventures  112, 113, 115, 116, 120 Lury, Karen  59 McAlpine, Lord (scandal)  210, 211, 212, 216, 219–22, 225 McHaffie, Malcolm  202 McInerney, F.  22 McKean, Liz  210, 226 MacQuarrie Review  216, 219 Maghull war hospital  138, 142 Makaton  246, 248 Mapping Perception (2002)  238, 252 Marie Curie (hospice)  40 ‘MedFilm’ database  151 Medical Ethics (1803)  173 Milburn, Alan  199, 200 Miller, Jean Kearns  115 A Million Little Pieces  116 Mills, Selina  106 The Miners’ Campaign Tapes (1984)  184, 185 The Mirror (newspaper)  202–3 Mol, Annemarie  222–3 Murray, Stuart  116 Myers, Charles  135 Nancy, Jean-Luc  45 National Society for the Prevention of Child Cruelty (NSPCC)  200 Netley (Royal Victoria Military Hospital)  11, 133, 134, 136, 137, 140, 144, 147 ‘neurotypical’ (NT)  115 Newsnight (TV series 1980)  210, 216, 217, 219, 221, 226 Nichols, Bill  23, 31 Noddings, Nel  38, 94 Non Visual Display Desktop Access (NVDA)  71 Northern Newsreel  181, 182, 183 Northern Scene  174, 176 Not Yet Diagnosed Nervous (NYDN)  135

256 ‘OAPs’  174–5, 177, 178 Ofcom  93, 101, 103, 107 Osler, Sir William  146

Index

Radical Happiness (Lynne Segal)  59 Rain Man (1988)  113 The Reason I Jump  113 Reinhardt, J. P.  72, 83 ‘relievers’  69, 84, 85 Rett Syndrome  245 Rheumatology and the Doctor-Patient Relationship (1976)  158 Richards, Naomi  28 Rippon, Peter  211, 218 Rivers, W. H. R. 134, 135, 138, 140 Robeyn, I.  74 Royal National Institute of Blind People (RNIB)  92 Russell, Charlie  25, 29, 31–2, 33

Scott, Joan W.  41 Seale Hayne  11, 133, 134, 137, 140, 144, 145, 146, 147 ‘See Hear’ strategy (Scotland)  93, 94 Services for Children (S4C)  201, 202, 203 Shelley, P  239 ‘shell shock’  135 Sherlock  104 Shields Stories (1988)  178–9, 181, 183 The Shipyard Tapes (1984)  184 Short-comings in Emergency Care (1985)  160 A Short Stay in Switzerland (2009)  21 Showalter, Elaine  140 Sile, Agnes  249 The Silent World of Doctor and Patient (Jay Katz)  154 Sinclair, Iain  231, 247 Siri  81, 85 Sky  93 Skype  83 The Slap (TV Series 2011)  197–8 smartphones  71, 76, 77, 80 Snyder, Joel  106 Sobchack, Vivien  23 social fund  178–9 ‘solidarity cinema’  153, 158–62 Sontag, Susan  41 South Korea: Earth’s Hidden Wilderness (TV series 2018)  101 The Spectator (magazine)  106 Speech Assessment Methods Phonetic Alphabet (SAMPA) conventions  76 Spence, Jo Phototherapy  48 Stewart, M.  72–3 The Suicide Tourist (2007)  22, 30 ‘swarm’  80 Swingbridge Media  185 Symns, J. L. M.  137

Salvarson  143–4 Sapir, Michel  158, 160 Savile, Jimmy  4, 13, 210, 211, 212, 216, 219, 221, 225 Saying Goodbye with My Camera  40 Schlesinger, Philip  215, 220 Schreibman, Laura  116 The Scotsman (newspaper)  204

‘TapTapSee’  80 Taylor, Diana  247 Technology Enabled Care Programme (Scotland)  112 ‘television autobiography’  58, 59, 60 ‘televisual memory’ (Amy Holdsworth)  58–9, 60, 65 Ten (2002)  167–8

Paralympics  96 ‘paranoid parenting’  195 Parton, N.  199 ‘passing’  81 Pathé Motion Picture Co.  136, 137 Penny, Jonathan  92, 97, 99, 102, 103 Perec, Georges  119, 166 Plato  239 Poletti, Anna  251 Pollard Review  216, 217, 218 Portelli, Alessandro  126 ‘post-broadcast television’  22, 35 Post Traumatic Stress Disorder (PTSD)  148 The Privatisation Tapes (1986)  179, 181, 183 Project Art Works  240 Ptolomey, Amanda  251 La pudeur et l’impudeur (1990–1991)  165

Index Terry Pratchett: Choosing to Die (2011)  22, 25, 29, 30 Thatcher, Margaret  176, 177 The Times (newspaper)  204 13 Reasons Why (TV series 2017)  7 This Our Still Life (2011)  246, 248, 249, 250 Thompson, James  251 Trade Films  172, 173, 176, 178, 180,182, 185 Trade Union Congress (TUC)  184 Tronto, Joan  212, 219, 224, 249 ‘phases of caring’  7–8 Turner, Victor W.  43 Tyne Tees (ITV)  172, 174, 186 UKTV  93 Unemployment in Scotswood (1980)  185 Un Grand Patron (1951)  151 Van Brussel, L  22 VoiceOver  71, 75, 79, 80, 82

257

War Neuroses (1918)  133,134, 143, 144–5, 146, 147–8 War Stories  220 Watt-Smith, Tiffany  134, 136, 145 Way to Go  22 Wellcome Trust  1, 134 We’re the Superhumans  95 WhatsApp  83 ‘What You Say is What You See’  97, 98 Wilson, Emma  26 Winston, Brian  34 Witnessing Tritherapy/Temoignages sur les tritherapies (1998)  164, 166 Words from One to Another/Paroles de l’un a l’autre (1993)  167 Words of Care-Givers/Paroles de soignants (1993)  167, 168 ‘Wrong Planet’  112 Yealland, Lewis  134, 137, 138, 139, 140 YouTube  35

258