Technology and dying

One of the issues for me, as a Computer Scientist, is how technology can be used to support the telling of stories, the sharing of experiences, and how it can facilitate reflection and personal perspectives on the final intensely personal, yet shared and socially impactful experience that we will all encounter.

Good technologies should empower people to communicate more effectively what they wish to, whether it is to project an image of themselves that they want the outside world to remember them by, to share details of their conditions to help themselves, their families, or even strangers, or simply to provide a space in which they can explore their emotions, thoughts and perspectives on their lived experiences.

The advent of digital recording has made the capture of images practically free, and facilitated simple sharing with restricted or public groups of people.  The explosion of mobile phones into semi-ubiquitous personal devices has led to unprecedented levels of ability for people to capture their innermost, immediate reactions, whilst editing software allows them to recraft raw material into stories of their own choosing. We were interested to see how these technologies might be used in these circumstances, and have encountered a range of perspectives on their use, from the structured to the unstructured, the personal to the abstract, and the reflective to the educational.

Russell Beale.

Life: Moving exhibition announcement

Photo credit: Andrew Burchell by Warren Pitts

We are proud to announce the Life: Moving exhibition, which will take place at St Barnabas Church in Erdington between the 28th and 29th April 2017. The exhibition features films by patients of John Taylor Hospice, and explores the power of film to communicate the meaningful and honest experiences of those affected by terminal illness. The exhibition runs between 10-6pm, and is free and open to all. We hope to see you there!

February 2017

February has been a varied month that has seen our team shift focus from weekly filmmaking workshops at John Taylor Hospice to planning the exhibition at St Barnabas, tentatively set for the 28-29th April. Briony has continued to provide individual support to our film-makers, but otherwise we have been preoccupied with planning the exhibition.

For one, there are a number of questions around the ethics of exhibiting these works, and we are striving to do justice to the content we have. First of all however there is the matter of what content we have available to us – as noted last month, one participant has opted to withdraw from the project (so far the first and only one). There are also a few other participants who have not been regular attendees of the workshops and we are only now seeing footage from them.

There has been some anxiety about how many films we would have, with three films seeming too few to fill an exhibition. The answer in that instance, we decided, would be to provide materials and insights from the development of the three films, a kind of making-of or “behind the scenes” access as it were.

While it may seem that a solution could be to not put on the exhibition (and this has been an acknowledged possibility from the very beginning of Life: Moving) the three films we do have confirmed are strong and powerful pieces, made with passion and dedication, whose directors are eager to publically exhibit their work. In this instance we have an ethical obligation, it seems, to screen these films.

Another interesting question that has come up in February is around the form in which we present each film. One film is several hours long in total, while others are under 10 minutes in length. We have had to think creatively as a team – drawing, for example, on Lisa’s expertise in curating art and gallery spaces – about how we might exhibit such a diverse range of work. Multiple screens displaying footage simultaneously, for instance might be a solution to exhibiting a three hour long work. If we want to do justice to the fantastic films created on the project, these are the kinds of challenges we need to overcome.

January 2017

This month has seen some of the project participants drifting away from the weekly workshop session format we’ve employed up to this point. We have had to adjust our approach to focus more on one-to-one meetings with participants, either at the hospice or visiting participants at home. It remans an open question as to how much film material we will have to show at the end of the project!

Also in January, we have had one participant review their own footage, only to decide not to continue with the project. The film-making process – representing the self through film – proved too difficult, traumatic even, particularly with consideration to the public exhibition planned for the end of the project. We are currently in discussion with this participant regarding possible alternative approaches that may be less traumatic: anonymising footage, or changing the subject or focus of the film.

This moment in the project raises interesting questions about the potential benefits and/or dangers that accompany public displays of vulnerability. How can we minimise the risks of filming and exhibiting vulnerability?

Going forward, in tandem with continued workshops and one on one film-making sessions, the focus of the project will shift to the exhibition.

Adrian Banting

December 2016

If November was about meeting the participants and introducing them to concepts around film-making, December saw participants fleshing out ideas and concepts, and in some cases putting them into practice.

Briony gave every participant an exercise tailored to their specific interests: taking photos or video of meaningful objects and moments in a day, recording thoughts at night just before bed, or recording a conversation with family members looking at old photographs. The results of these exercises were shown to the group, prompting feedback and discussion. This, in turn, prompted some participants to develop the ideas explored through the exercises. Other participants had a set goal in mind – they may have been planning a film on their own anyway, or Life: Moving provided an excuse to start.

Alongside this progress, December also brought its share of challenges: one participant who was particularly excited about the project has been hospitalised, and another died. Our thoughts are with these people and their loved ones.

A development that has emerged this month is the tension and even conflict between Universities’ ethical review structures and  Arts-based research projects such as ours. Gaining ethical approval for Life: Moving (or, rather, the Digital Technologies and Human Vulnerabilities project) was a long and rigorous process which Michele undertook in 2015 and 2016. NHS approval could not be given owing to the disciplinary and methodological particularities of this project, that is, that it is  s based on neither clinical nor Social Care activities. It took a year to find that out. Therefore, the University’s Ethical Review committee had to provide the approval instead. The approval that was granted did not originally include participants’ filming “post-capacity” in accordance with the 2005 Mental Capacity Act. Having sought additional advice, Michele now knows that there is provision within the act for this filming to take place in accordance with participants’ advanced wishes and consent. This issue, however, did prove disturbing for participants who are adamant that their wishes, and those of their loved ones who have right-of-attorney,  be respected. It was also, of course, disturbing to the team in potentially interrupting the research and compromising its integrity: it is after all a project aimed at improving ethical practices through dogged scrutiny of the ethical issues involved in all staged of its activities.

Adrian Banting and Michele Aaron

November 2016

Having established contact with hospice staff and hospice users in October, we ran the first workshops in the day hospice at John Taylor in November. These initial sessions were primarily about introducing participants to the goals and aims of the project, and to discuss any goals and aims on the part of the participants.

We showed short films made by professional film-makers (see our learning resources page) around themes of death and dying in order to give a sense of what is possible. At the same time we struggled to find films that were not geared towards leaving a legacy for family members. We felt this might be important to show, so as not to limit the role film might play for the participants.

This feeling was also borne out of participants’ wide range of reasons for wanting to make a film. Some participants stated their desire for their film to be a form of outreach about what it is like to live with a life-limiting condition or illness. Other participants are interested in their film exploring philosophical questions about the nature of life and death.

One of the big challenges for us going forward is accommodating these varied aims and goals. In some cases it may be difficult to balance the ambitions of the participants (the film-makers) against the practical constraints of life-limiting conditions, the wishes of family members/carers, and the Life: Moving project itself. These are questions and issues which are sure to develop more in time as participants begin now to produce and edit their own footage.

Adrian Banting

October 2016

‘Digital Technology and Human Vulnerability’ is a mouthful, and an indigestible mouthful at that, outside the context of academia at least. One of the first tasks of the team was to choose a clear and appealing title to carry the offer of our project to the hospice users we hoped to get involved. ‘Life Moving’ chimed with other Arts-oriented projects that had taken place at John Taylor, was immediately familiar as well as catchy. That it conjures both the motion and emotion of film that has been so evocative for my own research, worked very well for me too.

We started slowly in October, building interest in what we are doing amongst staff at JTH especially those in direct contact with outpatients who were increasingly being identified as important potential participants. Briony and I visited the day hospice each week to chat to patients and attend different kinds of staff meetings to reach out to the community nurses. This growing support from JTH teams translated into a good number of participants joining us for the first workshops.

Michele Aaron

Research blog aims and goals

This section of the website is dedicated to the academic concerns and interests of the project.

Our aim is to produce content that will be of use to researchers working in the following areas: end of life studies, film studies, digital humanities, media and cultural studies. More broadly, we expect this blog to be a useful resource for anyone interested in ethical debates around film-making, image-making and/or exhibiting public work in connection with vulnerable groups.

To achieve these aims, we will be posting work from practitioners and academics alike doing work in these areas. In addition, we will use the blog to report and reflect on developments in the Life: Moving project.