‘Inspiring Stories’ with Andrew Carnie
Emeritus Fellow, Winchester School of Art, Faculty of Arts and Humanities
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine. This month’s edition also features guest blogs from those working at the interface between the humanities, arts and medicine.
What do you do to engage and outreach with the public or patients?
I work as a practicing artist, and most of my time I now spend in the studio, though historically one third of my working week was in education, working with Fine Art Students.
Some of my studio time has always been spent researching different aspects of contemporary science. The ideas gleaned from this work, which has meant spending much time reading about science, attending science conferences and in labs, has permeated my artistic endeavour. In this work I have moved from thinking that my work was about particular science topics to thinking in some way that it dealt with a more general overview of how we see ourselves through science, how we deal with and take on broad ideas, and how we view ourselves through the prism of contemporary science.
For a number of projects, I have been significantly involved with patients, exploring their conditions, and the particular effect on individuals: this has been most prominently with sufferers of epilepsy, namely Temporal Lobe Epilepsy, and Focal Epilepsy and with heart transplant recipients.
Many such conditions in their manifestation are revealing as to the function of the ‘normal’ brain, and in talking to patients this has helped formulate my work and ideas and has created art works that allow contemplation and the discussion of these thoughts. I see my work as contemplations around these issues. So, I have been involved with individual engagement with patients, but another aspect of the projects I have undertaken is a wider public interaction with patients that has been through the exhibitions I do and the accompanying workshops and activities, put on with many contemporary shows.
What has driven you to participate in public engagement or patient involvement?
I have not been driven to undertake public engagement, it has in some way been the co-morbidity of funding for art projects I have been involved in. I am interested in it if it helps the scientists develop new healthcare strategies, and this is good. I have initiated involvement with patients as this has most definitely fed into the ideas in my work.
How did you get started with public engagement or patient involvement?
I think in the main it has just happened, to fully understand a medical condition one really needs to understand the picture from the patient’s point of view. So, I began hearing patients’ stories and gradually the funding has come with an emphasis on this deeper engagement with patients and I am happy with that.
On the other hand, I don’t want to get too fully engaged as I want to some extent to be able to stand apart, to be a critical friend. So, I don’t have to always tow a party line. I want through my work to add to complex critical debate where appropriate.
Why do you consider Public Engagement / Patient Involvement to be important?
For me this is very much about engagement. So, it is not just about me making an art work, but the spaces created, being a place where there can be an exchange, and interaction with an audience, be it the general public or patients.
It is very positive when you can evoke discussion through an art work. It is important because it reveals more than maybe other approaches to patient contact can. I guess it can be a little like a Rorschach test, something that elicits an unexpected response. Certainly, in the Hybrid Bodies project, the heart transplant related project, the clinicians and researchers praised the way artworks opened up a dialogue with health professionals and patients in ways other mechanisms had not.
It is what makes art important, that communication, that bringing together of people, it’s signalling the value of thought and ideas.
What reaction do you get during an engagement event?
Well, that is difficult for me to say. What I make is for me definitely an art work and not something purely illustrative, or purely made for public engagement, and so is subject to all kinds of interpretations and not a fixed view or a specific kind of engagement. Though the work is sometimes made in the context of a public engagement project, and this is how it might be funded.
Public engagement events may be part of the package and include workshops with patients and non-patients, young and old. These are often led by others, and may be in schools, community centres and in galleries. Within this context my work, as a piece of art, be it a painting, sculpture, video work or installation acts as a stimulus for debate. The results of the effectiveness of the engagement are often revealed in the workshops and beyond my work.
My pieces of work seem to go down well and the work is appreciated. I aim to make work that is open and appreciated by many people. I guess I would not get repeat exhibitions if the audience did not like or engage in my work in some way. In a good show I get to control the whole space, allowing me to invoke complex ideas and stimulate relevant thought and debate: the chance to make something that is transcendent.
What do you feel is the impact of the engagement events, what happens as a result?
Hopefully what I develop and exhibit in terms of an exhibition is a place to think, and to stimulate debate.
The Heart transplant project has gone on for more than nine years. The aim was and is to stimulate ideas and change. The project was trying to convey the difficulty of incorporating the donated heart psychologically; the difficulty of coping with the incorporation of the ‘other’. The operation is not simply replacing a simple pump but comes with lots of implications, with the significant boundaries of a sense of ‘self’ being broken.
The aim was to address these issues and to set up more complex ways of managing healthcare in dealing with patients’ concerns post-transplant by more thorough engagement pre-transplant. This has I believe, been put into action at the Toronto General Hospital where the research took place and where Dr Heather Ross, Director of the Cardiac Transplant Program at Toronto General Hospital, has implemented much more in depth conversations about the ‘meaning’ of the procedure with patients. The research team has written many research papers that hopefully have drawn attention to the issues worldwide and the team along with other artists involved in the project, wrote a paper for the BMJ, ‘Messy entanglements: research assemblages in heart transplantation discourses and practices to spread the word’.
In Newcastle, with the Illuminating the Self project, the idea of the engagement was to introduce sufferers of Focal Epilepsy to the notion of having a possible brain implant. This was research in Optogenetics which involved using an implanted optorode, to sense a disturbance in the brain and by emitting blue light, to induce genetically prepared nearby cells to react in order to pacify the disruption; a closed loop system to help solve otherwise intractable cases of such an epilepsy where other healthcare regimes had had no effect. The art work and public engagement work was in a sense to prepare the way towards an understanding of the procedure, with all it’s difficulties and prepare the way for volunteers for the research trial.
It seems in both cases ‘forewarned’ means ‘forearmed’, emotionally, psychologically and this should mean better health outcomes. This would be a good thing as we are moving into increasingly complex territory, as we move to being amalgams of mechanical and genetically the ‘other’.
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