Why use film in Public Health or Palliative care contexts?
Film is an incredibly useful and powerful tool for story-telling,and for related therapeutic or advocacy purposes. It can prove so empowering for those sharing their experience through it and for those who get to watch what results. But it is SO easy to get it wrong: to put the organisation’s or the audience’s, the funder’s or the facilitator-filmmaker’s, needs above those of the protagonist-participant.
As a result of Life:Moving, and the research underpinning it, a set of ethical guidelines were produced that can be used to help you set up a similar filmmaking project. These have been repurposed into this creative toolkit for best-practice filmmaking.
THE BUILDING BLOCKS OF BEST-PRACTICE
Consent – or rather ‘informed consent’ – is the cornerstone of ethical practice, but neither informing nor consenting can be a one time, or one way, deal but must be repeated and reiterated throughout a project.
Collaborative or participatory practice encourages agency and equality, where it was previously ignored. It emphasises the relationship between the facilitator-filmmaker and participant albeit with due recognition of its initial/inevitable unevenness and the emotional and psychosocial possibilities entailed.
You might prefer to think instead in terms of ‘collaborative consent’, then, which acknowledges the evolving exchange of knowledge, understanding and feelings that define this relationship and the trust, honesty and self-exposure fundamental to it. Remember that any of the participants’ family members or friends who are involved in the film would also need to provide, and reconfirm, their consent if they feature in the film.
Things to think about:
What exactly are participants consenting to (participation; exhibition; dissemination)?
How will you record reiterated and evolving consent?
How might the gaining of consent support participants’ best interests rather than those of the ‘producers’?
What does consent enable for the facilitator-filmmaker, for participants, for the funder/sponsor?
How will you adapt the recording of consent in relation to participants’ disabilities?
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 best practice or ethical 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.
Talk through how certain film techniques can have a particular impact on the audience and how certain images may resonate or recall mainstream movies.
You’ll want to use and discuss examples, such as those available in our resources section and the Life:Moving Films. Hollywood, and other mainstream, films often garner strong feelings with their emphasis on the beauty, heroism and painlessness of dying.
- How, for example, does a long held head-shot, intensify our connection to the individual whose feelings are being shared?
- How might it debunk the sentimentality of mainstream tales of terminal illness?
- How does background noise (like the radio in Rob’s short film) compromise sound quality or enhance the everydayness of the self-portrait?
It is vital that the facilitator-filmmaker establishes a safe, creative, collective and collaborative 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. Ethical praxis recognises participants’ central role in supporting, interpreting and inspiring each other’s work. Building trust is key.
How can the workshops maximise participants’ comfort and exchange?
How can they build trust and dissolve hierarchies?
What resources can be employed to provoke debate or model storytelling options?
Digital filmmaking is a fantastic way to tell untold stories and correct misrepresentation. Cameras are lighter and cheaper and everywhere. But it is all too easy to lean back on stereotypes or myths about death and dying, or sentimentality, to tell these stories, especially when the film is produced in the context of fundraising or advocacy.
The more that participants author or own their films, the more this can be avoided. The closer, more intimate, we are to their story, the more honest and less objectified they become.
Some participants will find it easier and more comfortable to lean on familiar tropes or cliches. They won’t want to think more critically or complexly about their film, despite workshop discussions. Within a diverse group of participants, and films, this can serve to strengthen the array of authentic individual characters and experiences.
If a participant loses capacity or dies before the end of the project and loved ones, or the facilitator-filmmaker, take over, a distance from, and glossing of, the participant’s experience may re-enter.
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 about this are had in advance.
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. Where relevant the facilitator-filmmaker 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.
Things to think about:
How can selection bias be avoided?
How do advertising materials for the project appeal to a range of demographics?
Ensuring that participants’ can participate is not just about the physical accessibility of the workshop. All spaces utilised during the project will need to also be comfortable and safe to be in emotionally. The filming devices used in the project will need to 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, and funders or sponsors might set a limit on the length of the project, an ethical praxis here would need to run to ‘crip time’. As Alison Kafer puts it, crip time involves 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.’
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 our 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: this is integral to the consent process. Do they want to be seen or only heard or neither in their film? Do they want their name or pseudonym attached to their film. 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.
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?
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 method but a group experience and practice. Participants must be involved and invested in addition to consenting. They must, ideally, become co-designers of the project which means they have a voice in if not control of every stage of it from what goes on in the workshops to how and where the films might be shared.
Participatory practice often emphasises skill acquisition. Creative expression and having ‘something to do’ will be more common goals for participants with terminal illness.
Things to think about:
In what direction will knowledge, skills and vulnerability flow in the workshops and development of the films?
What is the relationship between participation and collaboration and co-design?
AUTHORSHIP AND 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.
Things to think about:
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 FACILITATOR-FILMAKER’S ROLE
Prioritising participants’ authorship necessitates the relinquishment of that of facilitator-filmmaker. The latter comes, 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 should 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.
Things to think about:
In what ways are the expectations and tastes of the facilitators or funders brought to bear on the project?
How will you navigate your own training in quality-attainment with prioritising participants’ agency and authorship?
How might technology be used to ensure participants’ virtual presence at workshops?
INTIMACY AND AUTHENTICITY
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.
Things to think and talk about:
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?
How can an un-identified participant create an authentic story?
In the UK, 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.
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 or circumstances. 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.
Things to think about:
What support is available for not only the participants but everyone involved?
How will any sharing of the film(s) be mindful of the vulnerabilities of the audience?
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.
Ask participants early on what they want to achieve from and with their films. If they are hoping to share their films with a wider audience then they will be keen to benefit as far as possible from the quality-improving skills of the facilitator-filmmaker.