Hybrid Bodies Network - An artist-led interdisciplinary study into the effects of heart transplantation on donor families

Lead Research Organisation: University of Westminster
Department Name: School of Humanities

Abstract

Since the first successful operation in 1967, heart transplantation has become an almost routine form of surgery. Yet whilst significant bio-scientific research has been conducted into the procedure and its medical outcomes, there has been very little research into the emotional and psychological impact of transplantation on the families of deceased donors. On a broader level, organ transplantation signifies a shift in the way the body is viewed, raising questions around bodily boundaries, identity, and new non-biological kinship relationships.

The Principal and Co-Investigators are part of a long term international, interdisciplinary research project based in Toronto, Canada looking at the psycho-social effects of heart transplantation. The study, which is currently focused on better understanding the experience of heart donor families, is unique in that it brings together medics, visual artists, a philosopher and social scientists to study transplantation from multiple, interwoven perspectives with the aim of understanding the procedure within a broad social and psychological context. The proposed Hybrid Bodies UK network will bring collaborators involved in this existing group into dialogue with relevant UK-based artists, scientists, theorists and medical professionals with the aim of involving some of these new partners in establishing an artist-led UK base for our project.

In October 2017 we will hold a work in progress exhibition in London of artworks made by the three artists in the GOLA team. Each of these artists has extensive experience of making work that traverses the boundaries between art and science. They currently have access to the research findings of the scientific partners in Canada and to records of the personal experiences of donor family members there. Exploring issues of identity, embodiment, affect and kinship, they will continue to work closely with Dr. Ross and Dr. Shildrick to create work informed and inspired by this phenomenological research material. The exhibition and an accompanying half-day symposium will be for an invited audience of heart donor families, artists, medical scientists, and others with an interest in organ donation. The artists and (where possible) other members of the existing team will be present for the duration of the exhibition, where the artworks will act as a focal point for dialogue. While the artworks share a common starting point, each of the three artists will produce a separate work. They will liaise with Curator, Hannah Redler to ensure that relationships between the exhibited works are strong and the exhibition is cohesive, allowing space for the artworks to mutate and change in response to feedback.

In March 2018 we will hold a two-day workshop at University of Southampton that brings together existing members of the group with new members recruited at the initial exhibition for a more in-depth practical exchange of experience, ideas and practices facilitated through activities such as small group work, structured interdisciplinary Q&A sessions, panel discussions and presentations from different disciplinary standpoints.

This program of events will enable us to share both our existing innovative interdisciplinary working methods and our insight into some of the disruptive and emotionally disturbing aspects of heart transplantation with interdisciplinary researchers and practitioners in the UK. Channeled through visual and media arts, our ongoing research will explore the complexities of organ transplantation in a novel way. Using artworks in development as a focal point, we aim to entangle new research from the arts, biosciences and humanities without privileging any one discourse. Broadening the reach of our existing collaboration to facilitate exchange between researchers working in two different cultural contexts (Canada/UK) will lead to richer alternative avenues for new understandings, knowledge translation and outreach in both countries.

Planned Impact

Organ transfer is the subject of a larger and highly significant social and ethical debate on the nature of identity, kinship and community in a biotechnologically mediated age. Our international, interdisciplinary, artist-led network will have significant impact in three distinct arenas:

1. It will impact on individuals affected by organ transplant, enhancing the emotional wellbeing of donor families by opening up dialogue around some of the issues that most concern them.

The work-in-progress exhibition will enable heart donor families and others affected by organ donation to play an active role in the communication and expression of their experiences. Based on previous experience, we know that this can be a transformative experience for the individuals concerned. The exhibition, symposium and workshop will provide non-hierarchical settings, fostering informal interactions between professionals from a variety of disciplines, heart recipients and donor families. This will contribute to greater understanding and enhanced communication between donor families and health care providers.

2. Impact will be achieved through a new approach to healthcare.

Healthcare providers and healthcare policy makers are key 'stakeholders' in our project. Our interdisciplinary study into what degree of anonymity works best for heart donor families could have significant impact on the way in which day to day care is managed. The project also has implications for broader policy, influencing decisions regarding anonymity with relation to organ transplant and informing the quality of social care for those involved in organ donation. Our discursive, interdisciplinary methods can be applied to difficult questions that arise in any scientific context where these questions involve patient experience that cannot be adequately addressed using traditional scientific methods of enquiry. Examples include, mental health and cancer care.

3. Our interdisciplinary practices will impact on the work of other artists, curators and educators in communities including the voluntary and civil society sectors.

In the context of this artist-led research network, the visual arts bridge multiple communities, disciplines and methodologies. Our interdisciplinary practice brings new insights into both the significance of heart transplantation and the demanding process of close collaboration, where common ground is sometimes hard to achieve. The International, interdisciplinary GOLA project out of which the proposed network emerges is unique in its inclusion of artists as integral researchers in a major scientific study. Within this innovative project, where artistic research is carried out alongside, and in conversation with, the work of scientists, the artists actively participate in a major study of the effects of heart transplant on donor families. This model will underpin our new artist-led UK network in which research from the arts, biosciences and humanities will intersect, without privileging any one discourse.

The events around which this research network is organized will enable us to share and examine our working practices with other artists, curators and museum and gallery professionals, enhancing the understanding of interdisciplinary practice in the arts and building capacity to adopt interdisciplinary practices across the sector. The exchange of expertise from diverse perspectives will feed into production of the artworks we create, which will ultimately have greater impact on the general public, and on other artists working in a similar field.

Publications

10 25 50
 
Title Hybrid Bodies Chiasma exhibition 
Description An exhibition at the Winchester Gallery (14-27th April, 2018) of work in progress from the Hybrid Bodies project, plus gallery talks by artists Alexa Wright; Andrew Carnie; Ingrid Bachmann; Emily Jan and Dana Dal Bo. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2018 
Impact The exhibition and accompanying talks led to in depth discussion of the issues addressed by the works, and of how artworks can function to facilitate communication about topics that are otherwise difficult to address. There was a lot of discussion about the relationship between artistic and scientific research in the context of the broader project. The exhibition enabled us to practically explore ways of representing the science behind the project. Using interpretive material (in this case, wall texts and handouts), we were also able to work with curator, Hannah Redler in the space to investigate curatorial strategies for the final exhibition. The Hybrid Bodies team is geographically disparate. Whilst we hold regular (monthly) group Skype meetings, the opportunity to come together for the second time in the UK to exhibit works in progress after further development was invaluable, both in order to further consolidate our group identity, and, perhaps more significantly, to properly establish the presence of the project in the UK. The exhibition worked in tandem with the 2 day workshop, which drew participants from across the UK, to increase awareness of and interest in the project. 
URL http://www.hybridbodiesproject.com/chiasma-winchester-gallery/
 
Title Hybrid Bodies exhibition at London Gallery West 
Description In addition to the AHRC funded exhibition of works in progress from the long term international interdisciplinary Hybrid Bodies project (based in Toronto Canada), we were also able to mount an exhibition at London Gallery West of works from an earlier phase of the project by artists Ingrid Bachmann (CA); Andrew Carnie (UK) and Alexa Wright (UK). This is the first time these works have been shown together in the UK. The exhibition was open from 19th October-19th November, 2017 and directly preceded the exhibition of works in progress from the current phase of our project. On Thursday 2 November 2017, Artists Carnie and Wright gave a public talk at the gallery in conversation with curator Hannah Redler. This attracted an audience of approximately 20 interested professionals, general public and University students and staff. The event provoked lively questions and discussion. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2017 
Impact We were able to bring the works to a London audience for the first time, raising awareness of the project in the UK, particularly amongst University of Westminster staff and students. 
 
Title The Heart Project - work in progress 
Description A week-long exhibition at London Gallery West (20-24th November, 2017) of works in progress from the current phase of the long term international interdisciplinary project, Hybrid Bodies. The topic of this second phase of the project is heart donor family experience. This experimental exhibition enabled us to show works during the production process to an invited audience of art professionals, medical professionals, people directly and indirectly affected by organ transplant and University staff and students. In addition to the 3 existing artists, Ingrid Bachmann (CA), Andrew Carnie (UK) and Alexa Wright (UK), we invited three younger artists to participate in the exhibition, Emily Jan (CA); Dana Dal Bo (CA) and Rachael Causer, (UK). 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2017 
Impact The exhibition attracted a steady flow of visitors through the week (total around 50). These included: medical professionals, organ recipients, artists, curators and academics from across the UK. The artists and members of the scientific team were all in the gallery for the duration of the exhibition. This enabled us to give 'guided tours' of the work, explaining our intentions and gaining live, verbal feedback from visitors. This will have impact both on our own working processes, and will contribute to broadening and deepening understanding of the issues facing organ donor families amongst our audience and their broader networks. It has raised awareness, particularly amongst the medical professionals we have had contact with, of the way in which visual arts can communicate complex human experiences, such as those encountered by organ donor families and recipients. This also enabled the existing team to meet and to progress ideas with an emphasis on the artworks. We were able to make new connections with visitors to the exhibition, several of whom attended the 2 day workshop in Winchester in April 2018 and/or expressed a strong interest in maintaining contact with the project. 
 
Description The Research Network grant enabled us to bring together creative and healthcare professionals with individuals and families from the UK with a personal interest in the issues surrounding organ donation at two separate events, a one-day symposium at Gallery West in Harrow (23 November 2017), and a two-day workshop in Winchester (25-26 April, 2018). Both events were accompanied by exhibitions of work in progress by existing artists on the project, with the addition of two new British artists, Rachel Causer and Alice Kettle. Together these events were very successful in enabling us to begin to forge new relationships and interdisciplinary collaborations with colleagues from across the UK. Research towards the events led to discovery of other interdisciplinary groups working on the subject of the heart in similar but different ways. As well as promoting our own research, we were able to invite members of these groups, (e.g: http://www.insidetheheart.org) to the symposium in Harrow to present their research to us and to participate in group discussions.

Having all Canadian and British members of the research team present with us in Gallery West from 20-24th November was in itself a great opportunity to discuss the project with a focus on the artworks. The gallery was open and busy throughout the week. The artists in the existing team welcomed visitors and gave 'guided tours' of the works. This was a very beneficial process, both for us to gain feedback from a variety of perspectives, and also to promote the project, which was so far unknown in the UK.

The presentations and workshops that made up the two events were all recorded and will eventually be made available on YouTube once we have found funds to enable us to employ a professional editor to edit the many hours of video and audio footage.
Exploitation Route Building on the success of these events, we are now planning a workshop and exhibition in Montreal in August, 2019. Several participants from the Research Network funded events, including UK-based artists, scientists, theorists and medical professionals have already expressed an interest in attending the Montreal workshop. This will enable us to further pursue the interdisciplinary, international dialogue that we have established around the psycho-social effects of heart transplantation.
Sectors Communities and Social Services/Policy,Education,Healthcare,Culture, Heritage, Museums and Collections

 
Description The Research Network events were very carefully planned and much groundwork was done to ensure that participants were drawn from a broad range of appropriate disciplines and interests. The lively nature of all events and the intense participation of everyone present demonstrated that this strategy was very successful. The symposium, workshop and accompanying exhibitions were very effective in enabling us to share and examine our working practices with other artists, curators and museum and gallery professionals, enhancing the understanding of interdisciplinary practice in the arts and building new and ongoing interdisciplinary relationships. For example, Co-I Andrew Carnie has started to collaborate with artist Alice Kettle; curator Emily Scott Deering is now associated with the project; PI Alexa Wright has formed an ongoing working relationship with Sociologist, Jessie Cooper and with medics at Papworth Hospital. The exchange of expertise from diverse perspectives has been invaluable in helping us to plan future development of the artworks we are creating for the project. The work-in-progress exhibitions enabled heart and other organ recipients as well as donor families and others affected by organ donation to discuss with the artists whether and how the artworks successfully communicate the personal experiences or recipients and donor families. The symposium and workshop have fostered new working relationships between existing members of the team and new UK collaborators, and also between UK participants themselves. The event had immediate specific, measurable impact in two areas: Medical Producer for BBC News, Rachael Buchanan makes films about organ donation and is concerned about the media's approach to organ donation stories: "discussing all facets of these issues with such a diverse range of people from those in medicine, to ethicists and artists was an amazing opportunity and really made me rethink some of our preconceptions and approaches... it has already had an influence on the way I am approaching the immediate piece we are doing about BAME donation..." Katie Morley, Transplant Co-ordinator at Papworth Hospital, plans to extend the education program at the hospital to include elements of the workshop, in particular practical exercises: "I will take away ideas to be used with staff and patients to try to encourage others to think and express themselves in a non-medical fashion."
First Year Of Impact 2018
Sector Healthcare,Culture, Heritage, Museums and Collections
Impact Types Cultural,Societal,Policy & public services

 
Description Workshop for heart transplant recipients at Papworth Hospital 
Organisation City, University of London
Department School of Health Sciences
Country United Kingdom 
Sector Academic/University 
PI Contribution After participating in the 2-Day interdisciplinary workshop that I organised at Winchester Gallery in April 2018, Katie Morley invited me to Papworth Hospital to discuss ways in which I could work with staff and patients there. I have so far devised and delivered a presentation and workshop for heart transplant recipients that was therapeutic for participants and may provide research material for a future project. Workshop techniques that I have devised will be used by Katie for staff training at Papworth.
Collaborator Contribution Katie Morley, transplant co-ordinator at Papworth Hospital, has facilitated contact with heart transplant recipients and Medical Sociologist Dr Jessie Cooper from City University will be working with me on an ongoing basis to develop ideas for a new interdisciplinary project working with narratives around transplantation.
Impact I devised and led a presentation and workshop for heart transplant recipients at Papworth Hospital on 28th November 2018. This was facilitated by Katie Morley and also involved Medical Sociologist, Dr Jessie Cooper, who was assisting and gathering research material. Multidisciplinary - art; medical science; sociology.
Start Year 2018
 
Description Workshop for heart transplant recipients at Papworth Hospital 
Organisation Papworth Hospital NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution After participating in the 2-Day interdisciplinary workshop that I organised at Winchester Gallery in April 2018, Katie Morley invited me to Papworth Hospital to discuss ways in which I could work with staff and patients there. I have so far devised and delivered a presentation and workshop for heart transplant recipients that was therapeutic for participants and may provide research material for a future project. Workshop techniques that I have devised will be used by Katie for staff training at Papworth.
Collaborator Contribution Katie Morley, transplant co-ordinator at Papworth Hospital, has facilitated contact with heart transplant recipients and Medical Sociologist Dr Jessie Cooper from City University will be working with me on an ongoing basis to develop ideas for a new interdisciplinary project working with narratives around transplantation.
Impact I devised and led a presentation and workshop for heart transplant recipients at Papworth Hospital on 28th November 2018. This was facilitated by Katie Morley and also involved Medical Sociologist, Dr Jessie Cooper, who was assisting and gathering research material. Multidisciplinary - art; medical science; sociology.
Start Year 2018
 
Description The Heart Project 2 day Interdisciplinary Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A 2 day workshop at Winchester School of Art (25-26th April, 2018) looking at the emotional, psychological and philosophical implications of heart transplantation from a range of interdisciplinary perspectives. Approx 50 people with a special interest in organ transplatation attended: transplant recipients; a broad range of medical practitioners including nurses; consultants; transplant co-ordinator, psychiatrists; scientists; ethicists; artists; art historians; academics; philosophers; curators; a TV producer, and students. Through presentations; group discussion and practical workshops we shared perspectives on organ transplantation with an emphasis on donor family experience.

Participants have described the workshop as: 'an enormously rich, multi-layered and respectful 2 days of dialogue reflecting long, deep engagement and commitment by the project team' (Helen Pynor, artist); 'A thoroughly invigorating event, particularly due to the highly relevant but diverse backgrounds of the contributors, what a wealth of expertise in one room' (Emily Scott-Dearing, Curator); 'A genuine interrogation of how interdisciplinary working might take place. The event allowed me to make links with people from other disciplines at my own university (situated at the other end of the country) who I hadn't previously encountered, as well as re-establish links with Australian and Canadian contacts that I had met previously. The work shared was thought-provoking and stimulating, and the event will have significant impact as I continue to work in this area.' (Tim Jeeves artist and transplant recipient); 'An excellent networking opportunity'; 'An excellent interactive engagement across the disciplines' (Donna McCormack, Academic); 'The workshops were informative, inspiring and provocative. The opportunity to make important new connections across multiple disciplines was rare and rewarding. Challenged my thinking and pre-conceptions. Expanded my thinking in an area that I am quite well informed in.' Laura Machin, Medical Ethicist; 'Raised new research questions to develop and expand research program/agenda. Established relationships that will lead to new research.' (Susan Abbey, Transplant Psychiatrist).

The 2 day workshop comprised:

Presentations:
Introduction to the Hybrid Bodies project - Susan Abbey, Transplant Psychiatrist and original team member, UHN Toronto.
Rachael Buchanan - Medical Producer, BBC News 'Presumed consent in the UK?'
Laura Machin - Academic at Lancaster University working on medical ethics, 'Reimagining Donation'.
Stephanie Parsons PhD student and associate lecturer at Anglia Ruskin University,'Investigating the Emotional Management of Suffering during the Organ Donation Process'.
Tim Jeeves - Artist and transplant recipient, 'Not Just the Incredibles - everyday experiences of transplantation'.
Nicola Triscott - Cultural producer, curator and writer, specialising in the intersections between art, science, technology and society 'Co-enquiry: Cross-disciplinarity and interpretation'.
Katie Morley 'Writing to Your Donor Family'

Small group workshops led by members of the existing Hybrid Bodies team which addressed the following questions:
Organ donation and difference - Different cultural beliefs (ethnic and class) about donation.
Trans- multi- inter- disciplinary research - how can we work together more effectively? What does it mean to work effectively?
Interpretation strategies - writing gallery wall texts
The future of body intervention - mechanical and human
What is the role of the art research in medical projects?
The symbolic nature of the organs - do certain organs hold more significance than others for donor families/recipients?
Accidental intimacy - What does it mean to live with someone else's DNA inside you? How does deceased organ donation affect the grieving process?
How we use words/language in talking a out organ donation - thank you letters - what needs to be expressed and what cannot be expressed

Practical workshops involving drawing, making and storytelling.

Informal artist talks about the works on display in the gallery.

Q&A sessions, feedback and general discussion.

Building on the one day symposium held at University of Westminster Harrow Campus on 23rd November, 2017, the main aim of the workshop was to bring together a broad range of participants from both academic and non academic backgrounds in the UK, and to provide an opportunity for in-depth exploration of: interdisciplinary approaches to issues arising around transplantation as well as looking at the way in which artworks can embody some of the issues that have arisen during the Hybrid Bodies project. The event was strategically designed as a workshop, and invited participants from across the UK were targeted for their expertise. Whilst it involved an intense period of preparation on the part of the PI in addition to her normal workload, the outcome was enormously successful, providing a forum for non-hierarchical knowledge exchange across a wide range of disciplines. The event began with presentations to provide content for further discussion and thought. As evidenced by the list above, these covered a range of topics covering social, political and personal issues arising around transplantation, as well as interrogating interdisciplinary research methods. The smaller group workshops (6-12 participants in each) enabled more in-depth co-investigation of a range of topics. The convenors of each workshop (members of the original Hybrid Bodies team) introduced the themes, then participants took the ideas in different directions according to their own disciplinary perspectives and interests. This led to extremely lively and invested discussions and created an incredible energy amongst participants. The workshop was intended to forge new connections between the existing Hybrid Bodies team and external participants. It was very successful in this respect and has led to commitments by several UK participants to attend a future event organised by the Hybrid Bodies team in Montreal in August, 2019. It also enabled participants to make new connections with other British participants, both within academia and beyond, for example Medical Ethicist Laura Machin said: ' I am in the process of arranging to go to Cambridge to meet Katie, the transplant co-ordinator, and I'm meeting with artist, Tim this week on Lancs campus. I also have the privilege of meeting the Philosopher, Margrit again last week'.

Participants also commented that:
- The workshops were informative, inspiring and provocative.
- The opportunity to make important new connections across multiple disciplines was rare and rewarding. Challenged my thinking and pre-conceptions
- Expanded my thinking in an area that I am quite well informed in.
- The workshop challenged my ideas and understanding of how I can work with artists in the future.
- Broadened knowledge surrounding donation & encouraged wider reading
- Initiated new contacts to create potential collaborations through new network grant applications and networks.
- I have found being here a wellspring of inspiration full with ideas of ambiguity; matters of life and death. A gift of embodied certainty, thank you.
- A very engaging day where we witnessed the role of art in our thinking about medical experiences. An excellent interactive engagement across the disciplines.
- The workshop offered new theoretical perspectives that can be incorporated into my clinical work and academic writing related to knowledge dissemination of study results.
- The concept of 'co-enquiry' is new to me and a very helpful one that I am going to explore.
- Raised new research questions to develop and expand research program/agenda.
- A thoroughly invigorating event, particularly due to the highly relevant but diverse backgrounds of the contributors, what a wealth of expertise in one room
Year(s) Of Engagement Activity 2018
URL http://www.hybridbodiesproject.com/heartprojectworkshop/
 
Description The Heart Project work in progress symposium 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Approximately 30 people attended a one day symposium on Thursday 23rd November, 2017. Presentations were given by the existing Hybrid Bodies team (most of whom flew in from Montreal and Toronto for the event), as well as invited participants involved in similar projects. As intended, the event provoked lively discussion and requests for further interaction, that will potentially lead to new collaborations. This was the first presentation of our international, interdisciplinary project in the UK. The events (symposium and work in progress exhibition) attracted a great deal of interest from participants, and also from others who were unable to participate due to diary clashes. The symposium, held in Gallery West, was accompanied by a work in progress exhibition. Not only did these events allow us to broaden our network, but they also enabled the team to gather in London to deepen our collaboration.

The symposium included presentations by existing team members:
Alexa Wright
Heather Ross -
Susan Abbey
Ingrid Bachmann
and by invited guests, Giovanni
Year(s) Of Engagement Activity 2017