CO-CREATING FILMS WITH THOSE AFFECTED BY TERMINALLY ILLNESS:
ETHICAL GUIDELINES
There are various sites and sets of rules, practical toolkits and academic tomes, spelling out the tips to be taken, or pitfalls to be reckoned with, when creating still or moving images of, or rather with, vulnerable subjects. The guidelines that follow neither restate the basics nor meditate on the complexity. Neither do they explore what ‘ethical’ actually means – that’s for elsewhere (1) – but assume, even as they nuance, its broad attention to prioritising the best interests of others or ‘doing the right thing’. What these guidelines offer, then, are the starting blocks for what we might think of as a critical filmmaking – or an ethical praxis – in relation to terminal illness, where the traditional set up of ‘filmmaker filming participant’ has been replaced by a participant-led endeavour. This proposed praxis – this bringing together of theory and practice – has two groups in mind. First, digital film and media practitioners working with the end of life community, and second, hospices and related professionals who are employing film increasingly within their wellbeing, arts and outreach agendas. At the same time, these guidelines are meant to resonate more widely for all those working creatively with issues of vulnerability. This is no – there can be no – ‘ethical bible’, but it is a step in a desirable direction.
CONSENT
The cornerstone of ethical practice, consent is always required but rarely explored outside of the box that needs to be ticked. Consent assumes someone is subject to the will of someone else, and agrees to that subjection. The inherent power imbalance and potential abuse of this done-to-ness has been assuaged by the ascendancy of ‘informed consent’ and the full disclosure it depends upon. But neither informing nor consenting can be a one time – or totally one way – deal but must be repeated and reiterated throughout a project. Moving towards collaborative or even participatory practice invites agency, where it was previously ignored. It shifts the state of play from a dynamic between the facilitator-filmmaker and participant to a relationship between them with due recognition of the emotional and psychosocial possibilities the latter entails. What we might think of instead as collaboratory consent, then, acknowledges the evolving exchange of knowledge, understanding and feelings that define this relationship and the trust, honesty and self-exposure fundamental to it. Any of the participants’ family members or friends who are involved in the film would also need to provide, and reconfirm, their informed consent.
What exactly are participants consenting to?
What does consent enable for the facilitator-filmmaker and for participants?
How might consent become meaningful as a tool for enabling rather than controlling participants?
How might the gaining of consent support participants’ best interests rather than those of the ‘producers’?
CRITICAL THINKING
Film is far more than just a communication tool. It can convey emotion, cause discomfort, create community or simply entertain. Through all these things, and more, film persuades: for good or ill, brazenly or innocuously. An understanding of this capacity, but also of the historic and ongoing misrepresentation of dying, are essential foundations for an ethical praxis of filmmaking with regard to terminal illness. The development of any participatory filmmaking project, therefore, should involve the provision of not only practical skills, but critical skills as well. For every film technique there is a question of its impact upon the the audience as well as its resonance with previous representations. How, for example, does a long held head-shot, say, intensify our connection to the individual’s feelings being shared? How does it debunk the sentimentality of mainstream tales of terminal illness? How does the radio in the background compromise sound quality or enhance the everydayness of the self-portrait?
The discussion of death and dying remains relatively taboo in society. Where mainstream fiction films or television reports might romanticise or sensationalise terminal illness, compounding the absence of honest and open depictions, alternatives do exist in the form of independent films and feature-length or short form documentaries. The latter, in particular, frequently harness the power of the moving image whilst challenging misrepresentation. They also model other ways of storytelling and can be used to inspire participants and provoke discussion during the workshop phase of the filmmaking project. Critical thinking is variously defined, but might be thought of as framing ideas within existing bodies of knowledge whilst scrutinising the value of the understandings this affords. Establishing a safe, creative, collective and collaborative workshop space in which all those involved share ideas and existing knowledge, analyse previous examples of short form film, experiment with storytelling possibilities and give each other feedback, is key. Ethical praxis recognises participants’ central role in supporting, interpreting and inspiring each other’s work.
How can the workshops maximise participants’ comfort and exchange?
What resources can be employed to provoke debate or model storytelling options?
BEST PRACTICE
Ethical praxis is not the same as best practice – though the best practice is often the more ethical one. Ethical positions are flexible not fixed. They recognise and are responsive to specific circumstances rather than repeating a ‘one size fits all’ mentality that sometimes accompanies the call for sharing best practice. Ethical praxis is always in process, is always a process of developing practice based on critical thinking directed towards the best interests of others.
COUNTERING MYTHS
While the digital age seems to open up the world to all our gazes in newly intimate, connected and affecting ways, its sharing of human vulnerability is rife with the same kind of identity-based inequities, objectifications, and inscriptions of power long established in Western visual culture. Co-creating films with those affected by terminal illness would seek to avoid these imbalances. How might participants’ subordination or victimisation be avoided? Establishing their authorship, ownership and authenticity is crucial here. So too is the intimacy created through first-person film, which avoids objectification or the kinds of distance between spectator and screen that is its breeding ground. Distance creates objectification: personalisation, intimacy, affect, work against it. Avoiding both offensive and seemingly innocuous stereotypes or clichéd understandings of illness or disability is fundamental to an ethical praxis as well. Though unlikely to emerge in first-person films, if a participant loses capacity or dies before the end of the project and loved ones, or a facilitator, take over, this could become relevant. Sentiment or sentimentality is the swiftest means of moving people but it can be an ill gotten gain: moving people to pity or admire rather than understand or connect with. This is very hard to navigate, especially at the time that this might arise, and it is important therefore that discussions pertaining to this are had in advance.
There is an obligation to correct rather than repeat misrepresentation and the myths, stereotypes, sensationalism and sentimentality associated with it. It must be acknowledged, however, and reckoned with, that some participants may decide to lean on convention because of an attachment to it, because it comes naturally to them, despite workshop discussions. Such is the, desirable, outcome of their claim to authorship. Within a diverse group of participants, and films, this can serve to strengthen the array of authentic individual characters and experiences.
RECRUITMENT AND REPRESENTATION
It is important that the participants recruited to the filmmaking project reflect a diverse array of experiences, of both terminal illness and life. The diversity of participants, in terms of race, gender, sexuality, class, age, religion, condition and support network, will ensure that the films created are more representative of actual society. It will also enrich the workshop experience and film development process. The facilitator should work closely with appropriate professionals to make this happen, to ensure that a wide range of potential participants, and cross-section of service-users, are offered the opportunity to be involved. It will be harder to reach out to some individuals affected by terminal illness, than others, owing to the symptoms or stage of their condition, or cultural background, but ease of recruitment is not part of an ethical praxis.
How can selection bias be avoided?
How do advertising materials for the project appeal to a range of demographics?
ACCESS
All spaces utilised during the project will be disability-friendly. Filming devices will be matched to the participant’s needs and interests with respect to their physical conditions, familiarity with cameras or the creative process and confidence. While the co-creation of films requires a production schedule, an ethical praxis here would run to ‘crip time’, with an understanding that ‘expectations of “how long things take” are based on very particular minds and bodies…Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.’ (2)
CONFIDENTIALITY
Auto/biographical or first-person filmmaking – where a film is about an individual’s life and made by that person or through their collaboration with someone else – involves an unparalleled degree of self-exposure. As well as the emotional or psychological issues arising, this practice puts considerable pressure on attachments to, and understandings of, privacy, especially in the digital or viral age. Participants will choose, and can change their mind about, the degree of identifiability that they want to sustain. An ethical praxis must accommodate this choice – consistently and creatively – rather than preclude someone from the experience who wishes to remain unidentifiable. It must, in other words, prioritise the participant over the product. It would also involve a full discussion of confidentiality, tied as it is to trust, safety and the long-game.
What difference does it make to participants, if the audience for the film is unknown or, alternatively, unregulated?
How does it feel to share a first-person film with your friends, family, community and then imagine someone on the other side of the world watching it?
What is the relationship between anonymity and un-identifiability in the digital age?
AUTHORSHIP, AUTHENTICITY, OWNERSHIP
Prioritising participants’ choices over other considerations – technical, aesthetic or organisational – is a challenge but fundamental to an ethical praxis. This is not to say that questions of quality are relegated but rather that project development involves the provision of critical as well as practical skills so that the choices made, and ultimately the films made, benefit from them. Time and resources have to be allocated to this accordingly. Participants affected by terminal illness will have varying degrees of time, ability and energy available. While their active role in creating the film may vary or wane, their authorship – their origination of, and ideas for, the narrative – should be unaffected. Authorship, in this way, speaks to the authenticity of the film and the participant-filmmaker’s ownership of it. These things – authorship, authenticity and ownership – should attach to the participant-filmmaker rather than the facilitator-filmmaker regardless of the latter’s involvement and responsibility in the final product. A radical departure from more traditional understandings of authorship, the films might be co-created but they are authored by the participant. There would need to be pre-agreed terms about the use of the finished film by all the parties involved. These would be discussed, recorded and revisited within the collaborative consent process.
A film that gives voice to the honest, open and lived experience of the terminally ill – if it comes from, is authored by, them – will be most evidently and effectively authentic. If participants become too ill to sustain their involvement, the filmmaker should work with their family or friends or ‘responsible individual’, if these people are present or identified by the participant, to try to sustain their perspective. What is to happen in this eventuality should be explored and decided upon during pre-consent discussions and recorded, and revisited, within the collaborative consent process.
How can an un-identified participant create an authentic story?
How can authorial control be maintained when a participant loses capacity?
How can a story be truly owned by an individual if that individual is not the sole creator of the story? What makes an experience feel authentic?
What is the role of the facilitator-filmmaker in a participatory project?
THE ROLE OF THE FACILITATOR-FILMMAKER
The prioritisation of participants’ authorship necessitates the relinquishment of that of facilitators. The latter come, inevitably, with greater knowledge and experience of film and filmmaking. They come with cultural and critical capital. This is in addition to the inherent imbalance between those with terminal illness and those without, between the vulnerable and the invulnerable. Rather than being a source of tension or inequity, this context must sponsor an open, sensitive and collaborative working space, but one that depends on facilitators’ commitment to de-centring their priorities or expertise and favouring instead the agency of the participants. Group conversations, involving several people with terminal illnesses, might provide much better exchange and insight than one-on-one encounters which may feel exploitative or irresponsible when undertaken by able-bodied facilitators. Language lets us down. Whether ‘enabling’ or ‘empowering’ or ‘guiding’ or ‘validating’, the words for the work of the facilitator invariably favour their authority. The challenge of an ethical praxis, is to own this knowledge, this located-ness and co-create an environment, in the workshops, and films, that is enriched rather than compromised by this background.
There are several ways to attain this, paramount among them is the emphasis on the role of the participant in the process of both their own films and that of their fellow participants. The group workshops, as the basis for project development, are the ideal forum for creating this space and they would involve open-ended exercises. Various options, adapted to the different conditions, creativity and confidence of participants, should be offered by the facilitator and added to or revised by participants themselves. As open-ended exercises these disrupt participants’ expectations around what the researcher wants, and emphasise, instead, their ownership of the process and stories. When participants return to workshops and share material, the responses of other participants should come, increasingly, to dominate discussion. It must be remembered that participants might not be able to attend workshops but creative solutions should be sought to still prioritise peer-feedback and collective discussion. The exercises are important for validating the participants’ attempts to narrativise their lives via film. They also provide a mechanism for beginning, what will hopefully become, a process of narrating and for that narration to be witnessed. Facilitators and participants become validators and witnesses of each other’s contributions and experience. The literal role of facilitators in the making and editing of the film will, ultimately, depend on the condition, creativity, character and confidence of the participant.
In what ways are the expectations and tastes of the facilitators or funders brought to bear on the project?
How might technology be used to ensure participants’ virtual presence at workshops?
INTIMACY
Prioritising the participant’s voice and experience will lend the film the necessary authenticity and intimacy for it to have its desired effect. Whether as simple storytelling, challenging misrepresentation or creative outlet, the film will have an effect, and this is worth thinking about beyond the possible goal of funders or venues or hosts. Intimacy and authenticity are, and should be, closely connected if not co-dependent and technology plays an important role in rendering the filmmaking ‘natural’ and material accessible. Different styles of filmmaking and different devices have an impact on the creation of intimacy. Some devices are more intrusive than others, some less. Some are consciously addressed as the participant speaks ‘to camera’, some not. As such our awareness of the device often dovetails with the ease of the participant in the film which in turn influences the intimacy attained. Alternatively, participants’ familiarity with a device might be the deciding factor in its usage. Their comfort around, and with, the technology employed will influence the viewers’ ability to connect with the film. The selection of the filmmaking device should be determined by the participants’ needs and interests and not the facilitators. Top of the range digital SLRs might be easy to use for some, but may well prove too challenging to individuals with physical disabilities and/or with no experience of filming, cameras or creative pursuits. Participants with different degrees of paralysis will be reliant on someone helping them with the filming, and the creation of intimacy in their films, and sustaining of their authorship, would be an important discussion to have in workshops.
What is the desired effect of the film?
How will individuals feel when watching the film?
What provision has been made or outlet provided for the effect of the film upon viewers?
What role does technology play in enabling intimacy?
CAPACITY
The Mental Capacity Act (MCA) was designed to protect the rights of individuals who have lost capacity and this includes protecting their decisions prior to, and in knowledge of, a potential loss of capacity. Organisations and ethics committees might not be fully versed in the MCA and tend towards conservatism in fear of litigation. Instead, all those involved in the film project should feel confident that consent is meaningful and respected, and in accordance with the MCA. Repeated and reiterated collaborative consent will allow for the recording of both early and late consent to the project continuing should capacity be lost.
VULNERABILITY
Legal definitions of capacity and vulnerability underpin official discussions of ethical practice, and the application of the MCA as well as related acts, but an ethical praxis would allow for more capacious understanding of these terms. An adult is described as vulnerable if their ability to act in their own best interests is impaired through physical or mental conditions. Various factors might influence an individual to have impaired judgement, to make bad decisions, to act in bad faith. But the inherent power imbalance – between able-bodied facilitator-filmmakers/researchers with their cultural capital and institutional backing – can lead to a potential coercion or swaying of the participant’s mind. This could be viewed as creative input, or professional guidance but it is important to foresee this possibility.
What support is available for not only participants but everyone involved?
PARTICIPATION
An emphasis upon participation and participatory practice has taken on increasing status within community arts projects, international development and various forms of public or third sector work. It speaks to the prioritisation of the agency of the participant, but can only be effective if it is contiguous with ethical praxis rather than generating a ‘new tyranny’ of compulsory processes and rules. Collaborative, even collective, and tied to claims to authorship and authority, participation here comes to describe not only a filmmaking development method but a group experience and practice. Participants must be involved and invested in addition to consenting.
In what direction will knowledge, skills and vulnerability flow?
What is the relationship between participation and collaboration?
QUALITY
The emphasis on collaborative participation, and on participants’ authorship, is thought by some to compromise the quality of a film. The group workshops become the key venues, within an ethical praxis, for the exchange of creative ideas and giving of both feedback and pointers by those involved in the project. This would come, initially, from the other participants but would also come from facilitators. Facilitators need to be careful not to impose their taste and aesthetic criteria onto the films, instead their insights should be part of the larger discussion and posed in such a way that any imposition is avoided while their expertise can be benefitted from. Facilitators should also withhold strong criticism unless participants criticise the material themselves. While the priority lies with ethics rather than aesthetics, the aim of any ethical praxis should be to afford both.
FAMILY/CHOSEN FAMILY
Some participants will want to, or need to, work alone and some won’t. Only some family members or friends will want to be actively involved in the filmmaking. Some may have an interest or investment in shaping the finished film in a particular way. It is important to be sensitive to all these different circumstances, and to the different kinds of significant and/or familial relationships that the participant might have.
NOTES:
(1) For this see the scoping report and journal article that emanated from the original study.
(2) Alison Kafer, Feminist, Queer, Crip (Indiana University Press, 2013) p. 27.
RESOURCE LIST
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
