This scoping report offers a reflection on the six-month pilot study, conducted between October 2016 and April 2017, and its findings. It focuses on the shifts in knowledge and interpretation that resulted from the transdisciplinary collaborative research. The prototypical ethical praxis, emerging from these shifts, will be available separately.

Background:

In the last two decades, digital developments have afforded new possibilities for the recording, representation and sharing of the profoundly private and rarely seen experience of dying, as well as that of human vulnerability more broadly. This considerable surge in visual content and in our exposure to others’ suffering has been accompanied by only limited discussion of its ethical implications.

Centred on a filmmaking project based at John Taylor Hospice in Birmingham, this research investigated the ethical issues involved in representing and sharing end of life experience through the medium of digital film. Through workshops and home visits, participants were given practical and critical training and support to develop and co-create their own films. Working closely with key members of the interdisciplinary team, different ideas, priorities and devices were explored and six films created. An exhibition was designed for these films and installed at a community space local to the hospice at the end of the project in 2017.

The project aimed to challenge society’s misconceptions about terminal illness by providing those experiencing it with the opportunity, skills and platforms to tell their own stories, and by bringing these stories to a wide audience. In prioritising ethical praxis – as the project’s foundations and orientation and ongoing discussion point – in the workshops, research meetings and exhibition, the project aimed to counter the pervasive objectification, dehumanisation, exploitation or disregard of the dying within visual culture. In these ways, the research sought to better understand the potential of digital film to serve the best interests of the vulnerable lives it so often depicts and then disseminates.

Research Team: 

Principal Investigator: Dr Michele Aaron (Film Studies, University of Birmingham/Warwick from September 2017); Collaborative Investigators: Professor Russell Beale (Computer Science, University of Birmingham); Dr Cath Lambert (Sociology, University of Warwick); Dr Lisa Metherell (School of Art, Birmingham City University); Briony Campbell (Filmmaker); Adrian Banting (Research Fellow); Jed Jerwood (Art Psychotherapist, John Taylor Hospice).

Participants: 

Andrew Burchell, Yussef and Haifa Ahmed, Rob Homer, Keisha Walker, Fran Tierney and Peter.

FINDINGS:

The project pointed to a range of conclusions, recommendations and avenues for further work. Some were anticipated, some not and some are still evolving. Though over-ambitious in its timescale, it demonstrated that, at base, film can be used effectively and ethically within a palliative care setting or context for various therapeutic and broader, socio-cultural, goals. Similarly, it was evident that films made or determined by the terminally ill themselves challenge existing representations of, and knowledge about, the personal and clinical experience of dying, and yield considerable power to intervene in prevailing assumptions about this experience. The less obvious, more significant, findings emerge in relation to the pilot study’s three main research questions which will be addressed in brief, below:

• What are the most pressing ethical concerns for digital film practice for the representation and sharing of the experience of the terminally ill and their families?

• What are the most effective digital tools for the representation and sharing of the experience of the terminally ill and their families, and for empowering them in and through the process, for immediate and enduring use?

• How might the work of digital arts and media practitioners, educators, and theorists focused on questions of human vulnerability, be transformed through collaborative participatory critical practice?

The most pressing ethical concerns arising during the project were found to be particular rather than general. The broad and more familiar matters of consent and confidentiality were navigated with relative ease throughout the research, as well as before the project started and after it ended. The HRA’s (Health Research Authority) consent form templates, which assume either able-bodied-ness or incapacity, had to be adapted for the specific disabilities of the consenter but this was relatively uncontroversial. Two ethics-related obstacles did arise, although neither was concerned with film practice but rather with organisational practice concerning ethical approval. First, inaccurate knowledge about the gaining of ethical approval from both the hospice and within the University of Birmingham, meant that the study was delayed for a year while it went, unnecessarily, through two NHS committees only to be rejected by them for not qualifying as research, by their definition.(1) Secondly, the University of Birmingham’s ethics committee, which ended up being the body approving the research, would not include within this approval that filmmaking could continue after a participant had lost capacity despite the participant’s consent for this to happen and, most importantly, the Mental Capacity Act’s (MCA’s) support of this. Their lack of knowledge was inherited from the University’s legal and governance team who were found to be inadequately trained on the Act and/or insufficiently funded or empowered to be able to pursue the necessary legal advice.(2)

The study sought to develop an ethical praxis alert to the inequities and misrepresentations surrounding terminal illness and sensitive to the different needs and interests of those in or making the films, that they might be empowered without compromise as a result. One of the study’s clearest findings was that compromise is unavoidable when working within such a short time-frame in circumstances fraught with the high stakes of participants’ potential deterioration or changes in ability. Though this was allowed for to some extent – as the on-paper ‘risk factors’ to the research’s success – we could not foresee how this would play out in actuality (see Manzo and Brightbill). Hospitalisations, ill health, medical treatments but also the personal repercussions of turning the camera on oneself, disrupted participants’ progress and delayed the project’s completion. As well as affecting the timetable, these practical and, invariably, emotionally-loaded issues became the abiding concern for the team who focused, increasingly, on maximising immediate benefit for the participants (and, later, for other key stakeholders) rather than on additional elements and outputs.(3)

The broad and more familiar ethical concerns underpinning the ethos of the workshops and co-creation of the films – of collaboration, dialogue, respect, safety and the facilitation of agency and authorship – were uncontroversial too. They were a regular and crucial focus of the teams’ discussions – how the researchers might encourage rather than direct or even manipulate participants’ creativity; how participants might lead the feedback on each other’s ideas etc. – but generally expected and well documented already in discussions of participatory practice.(4) However, how they fed into the realisation of participants’ truth-telling first-person films and their creative ambitions depended on specifics again. In two instances, at least, this process was disrupted. Firstly, in the case of Yussef, who died early on in the project, the film that resulted depended heavily on Briony’s input and was more legacy piece, for the participant’s wife, daughter and community, than ‘autopathography’. This neither compromised its ethics nor its countering of the misrepresentation of dying – nor Yussef’s creative and authorial presence, for the film contained footage from his music videos and performances. However, it highlights how the tension between authorship and quality common to discussions of community or participatory filmmaking – that is, how hard it is to achieve both in non-professional films (see Goris et al) – must be tempered by discussions of disability and even dying. Similarly, skill acquisition and development, and increasing technical prowess – the precepts of participation – often assume participants’ able-bodiedness, but also a luxury of time. In Andrew’s case, his medical emergencies during the project severely curtailed the ambitions for his film which caused him considerable frustration. Both of these examples point towards the unforeseen but pressing ethical demand that arises from this particular project, and of working with participants’ expectations and aspirations in relation to their physical deterioration. The authorship versus quality pairing then, was found to be specific to the individual’s condition but also to their character, creative skill-set and/or confidence.

An additional issue is worth mentioning because it impacts upon our understanding of another tension central to the study: self-representation versus misrepresentation. Two participants, at least, found the experience of turning the camera on themselves particularly gruelling. There is something acutely effecting about this specific experience which sets it apart from other arts practices and psychotherapeutic understandings. Despite both participants’ initial commitment to the project, outspokenness on their condition and in support of the hospice, and the psychotherapeutic care available, self-filming invoked new and difficult issues for them. One of these participants ended up withdrawing from the project, the other remained but required additional support.

As a result of the delays to the project’s completion, we were unable to involve the participants in the design of the exhibition to the degree that we would have liked. It was designed to be responsive not only to the ‘general’ ethical issues surrounding the display of such material – of, say, countering voyeurism and objectification, of facilitating human connection – but also to the particularities of our participants’ films and experiences. As well as a central ‘cinema’, which screened all the films on a loop, six zones, one for each participant’s film, were created. In this way, visitors had to engage with the research, or critical thinking, that framed each film and their production. Each space was individualised to reflect the content and character of the films and participants, to enable visitors to have some control over the time they spent with them and to encourage but also nuance the intimacy and immediacy afforded. One pressing ethical issue arose in relation to Yussef and Haifa’s film. Yussef was keen that a professional piece be achieved, and following his death Haifa supported the realisation of this too. Yet, there was a concern that the completed film spoke for him rather than came from him, that it fixed his story without him. It was decided by the team and in discussion with Haifa, that as well as its place on the central loop, his zone would share a collection of other clips and recordings produced or selected by Yussef and Haifa as part of the project. Two feedback zones were included in the exhibition, one for visitors’ anonymous feedback and one where they could hear/read the participants’ reflections on the project. A death café was also held during the exhibition, which furthered visitors’ opportunities to think about or discuss their experience. In this way, the exhibition attempted to echo the ethos of the participatory project.

The most effective digital tools for the project were those that suited and worked best for the particular participant: those that met both their physical abilities and creative intentions; that were effective communication-wise and empowering ability-wise. In this sense, the tool matched the individual with regard to disability, creativity and confidence again. Rob, a keen amateur artist and poet, progressed from filming himself on his own (non-smart) phone, to using a digital SLR to record his painting of a self-portrait and address to camera. His final film, edited by Briony in consultation with him, used time-lapse to combine the developing portrait with his monologue. Keisha wanted to capture her point of view experience of the world from her wheelchair, and experimented with using a go-pro attached to her body or chair to do so. This proved impractical, and frustrating, and she returned to more familiar technology: initially her Samsung smartphone and then a Samsung notebook.

We also found, through the design of the exhibition, that there was an imperative to match recording technology to sharing technology. In other words, we sought to extend the tone set during the making of the film into the experience of watching it. For example, Peter’s film was composed of a series of still images – photographs he had taken on various walks during his adult life – and his voice-over. He had no desire to experiment with new technologies and wished to stick with the known. We re-created the slide-show feel of his film in his zone through using a projector. Where he denied the digital in the making of his piece, so too did its display. Yussef and Haifa’s zone did the opposite: it depended on the digital. A touchtable was used to display the array of clips previously mentioned, encouraging a degree of interactivity and non-linearity that counterbalanced the closed narrative of the film. Andrew’s piece was filmed nearly entirely in his home by Briony. The camera captured his reflections on death and dying and the everyday care for him by community nurses. In the exhibition, the domesticity of the film was recreated in Andrew’s zone as ‘living room’ with flat screen TV and sofas and beanbags.

With Andrew’s film, as elsewhere, the digitality of the making and sharing of the film seems incidental: incumbent upon the state of contemporary technology rather than selected for its specific affordances. The digital, in this way, is ‘merely’ a medium for production and transmission. It is where it operates as a ‘means of expression’, as affording or enhancing qualities of the film that the potential of digital film comes most into play (see Lashley and Creek). That said, even in the minor key, digital devices in their flexibility, and related facilitation of access and intimacy, enabled and enriched self-representation and the achievements of this project. It was these immediate concerns that dominated the project rather than questions of enduring use, or the digital as sphere of global dissemination. The relationship between digital technology and human vulnerability underpinned the exploratory nature of this research and anticipated future work and is explored in more detail, alongside these issues, in the journal article that builds upon this report.

The degree to which the critical practice of the research team was transformed by the experience is still evolving. The core team involved in the weekly workshops and home visits – Michele Aaron, Adrian Banting and Briony Campbell – and our collaborator at the hospice, Jed Jerwood, note its impact on their thinking, work and practice. For research fellow Adrian, it expanded his understanding of ‘vulnerability’, a key element within his doctoral research and post-doctoral intentions. For filmmaker Briony, the project, and the research team’s discussions of it, caused a critical re-think of her role ‘in giving agency to others’ and she ‘found validation of the decision to de-prioritize technical production quality in favour of participant’s comfort levels’ within her subsequent practice. It gave her a new understanding of the relationship between the practicalities of a participatory project and its creativity: ‘Any shortcomings in [the practical] phase will directly affect the opportunities for the creative lead to develop a mutually trusting and enabling relationship with their participants. The resources and dedication needed to build the ideal environment for a fruitful participatory project… are not available in every participatory project, however well intended. We were very close achieving an ideal environment in Life Moving and I carried many of the experiences that work into the classroom at Coventry university.’

Jed, art psychotherapist at John Taylor Hospice, feels that the project has impacted his thinking and work, as well as some of the Hospice’s practices. He now ‘consider[s] ethical issues differently – especially in relation to the longevity of still and moving images and issues of ongoing consent with vulnerable groups.’ Using the films within his teaching at the Medical School at the University of Birmingham, he found that ‘the power of film to convey an emotion has been immense – even to cynical medics!’. At John Taylor, the project ‘has impacted upon how we make and use films for fundraising and awareness raising and how patients are involved in this – doing with rather than doing to.’

For the PI, Michele Aaron, the project fuelled a re-centring of her work upon the live value of film research and application of film theory in the digital age. It brought into sharp focus the tension between not only theory and practice, but between the role of the academic in academia and in the world. As the push for ‘impact’, especially within the Arts and Humanities, gains in heft, and the prevalence of medical Arts and Humanities research increases, there is a need to better understand, and harness, these tensions. This research was experimental in its approach but proved to be a ‘guinea pig’ too for research and governance support at the University of Birmingham. Impact-engaged researchers too easily and too often find themselves pitted against the institutions they represent.

Recommendations:

1. Consider how the recording of consent needs to be adapted to the specific needs and abilities of participants.

2. Are University’s Governance and Ethics teams properly trained on the MCA and on medical humanities research? This includes research ethics committees and administrators, research support staff and even legal officers.

3. Ensure flexibility in all deadlines, milestones and outputs achievement, and for the emergence of new priorities. This is about recognising the ‘crip time’ of dying but also/as the ‘normate’ time or normativity of academic conventions (see Kafer)

4. Medical Arts/Humanities projects like this should build in and budget for wellbeing support for the research team

Endnotes:

1. As a result of this, the University appointed a graduate trainee to work on responsible engagement in the humanities and social sciences, including the efficacy of ethical review for impactful research.
2. The PI eventually sought clarification on this and the MCA from a colleague/expert and the research was not impeded further as a result.
3. This scoping report, for example, is sole, rather than collaboratively, authored, as originally intended, because it was written by the PI long after the end of the funding.
4. They will be addressed further in the article emanating from this research, and in the ethical praxis guidelines.

Bibliography:

James M. DuBois, ‘Ethics in Behavioral and Social Science research’ in Ana Smith Iltis, ed., Research Ethics (New York: Routledge, 2006) 104-20

M. Goris, L. Witteveen & R. Lie, ‘Participatory film-making for social change: Dilemmas in balancing participatory and artistic qualities’ Journal of Arts & Communities, 7.1-2 (2015): 63-85.

Alison Kafer, Feminst, Queer, Crip (Bloomington; IL: Indiana University Press, 2013)

Mark C. Lashley, Brian Creech, ‘Voices for a New Vernacular: A Forum on Digital Storytelling Interview with Marie-Laure Ryan’ International Journal of Communication, 11 (2017), Forum 1106–1111.

Lynne C. Manzo and Nathan Brightbill, ‘Toward a Participatory Ethics’ in Sara Kindon, Rachel Pain and Mike Kesby, eds., Participatory Action Research Approaches and Methods: Connecting People, Participation and Place (London and New York: Routledge, 2007) 33-41.

Rose Wiles et al., ‘Visual Ethics: Ethical Issues in Visual Research’ ESRC National Centre for Research Methods Review Paper, October 2008: http://eprints.ncrm.ac.uk/421/1/MethodsReviewPaperNCRM-011.pdf Accessed 11 July 2017