Over 70 interviews with families who have a relative in a long-term coma following brain injury have been conducted by Professor Jenny Kitzinger and Professor Celia Kitzinger – co-director of the Coma and Disorders of Consciousness Research Centre. These interviews have subsequently been analysed by a plethora of academics and explored by artists and makers, with multiple questions and lenses applied.
In my own initial analysis of these interviews, I investigated how relatives of people in a permanent vegetative state talk about their own future and that of their loved one. The findings of this work can be found here:
Whilst analysing the way in which these families talk about the future, my attention was also drawn to the way relatives talked about physiotherapy and other allied health professions. Addressing my noticing, I was able to conclude that the way in which allied health professionals ‘act’ and the therapies they deliver or withdraw, inadvertently indicates to families, the future state of the patient.
The identification of the role the temporal plays in how families make sense of therapy interventions and the mis-match in understandings between professionals and families led
first to a paper, second to the development of a multimedia resource for Allied health care professionals and third the development of teaching workshops for pre-registration students.
As analysis of the family interviews illuminated significant social, medical, legal and economic issues (see www.cdoc.org.uk), communicating the plights of people in disorders of consciousness and their families however requires much more than words.
Professor Jenny Kitzinger invited Future Matters Collective artist Seth Oliver to absorb himself in the interviews and produce a visual response as one way of seeing this data and tell it’s story.
Seth produced three stunning ink canvases [shown above] describing them as “parts of a series of meditations identifying moments in time. There is a constant flux between any certain shape of life & death. Between the traumas & the glimpses of hope we are after becoming before.”
The canvases have been showcased alongside research findings and other collaborative art works at multiple public engagement events giving those unfamiliar with brain injury, access to the social and ethical issues which surround their body and person.