Blog

21g (2003). McGuinness, S. (2015), Photo credit: Robert Ellis.

Lived Lives: A Pavee Perspective was an artist-science collaboration project aimed at addressing suicide in the Irish Traveller Community. In this “hard to reach” community, 11% of deaths are due to suicide and men in the Irish Travelling Community are at 6.6 times more risk of suicide than other Irish men. The study was carried out by researchers at St Vincent’s Hospital in Dublin and an artist from Galway Mayo Institute of Technology in conjunction with researchers from Goldsmiths, University of London and University of Exeter Medical School. The results of this collaboration were published as a Research Article and openly peer reviewed on Wellcome Open Research. In this guest blog, researchers, Kevin Malone and Eimear Cleary, and artist, Seamus McGuiness, describe their work.

Lived Lives: A Pavee Perspective

The Lived Lives project is a unique, durational, interdisciplinary art-science research project around the issues of stigma and suicide. Originating in 2006, Lived Lives combines a psychobiographical autopsy (where family members, friends and other people close to a deceased individual are interviewed) with a visual arts autopsy, in which suicide-bereaved families from 22 counties around Ireland donated stories, images and objects associated with the lived life of a loved one lost to suicide. This action restored identity to the deceased and bringing the lived life to the fore as opposed to the manner of their death. Most of the research engagement took place around peoples’ kitchen tables in their homes. From these donations, artist Seamus McGuinness created a series of art installations including, 21g, Archive Rooms and The Lost Portrait Gallery. With express permission given by the donating families, a mediated exhibition was co-produced and co-curated with artist, scientist, families and communities. Audiences are invited to touch and feel the physical artworks. This mediated experience facilitates dialogue and response around suicide, becoming a community intervention model.

Since its inception, the project has engaged a number of diverse audiences including suicide bereaved families, rural communities, young people and public health and cultural policy makers. Indigenous ethnic minorities (IEMs) bear a significant increased risk for suicide and so the aim of the Lived Lives: A Pavee Perspective project specifically was to engage with Irish Travellers. Irish Travellers are an IEM with social and cultural parallels with other IEMs internationally, experiencing racism, discrimination, and poor health outcomes including elevated suicide rates. The male Traveller suicide risk is 6.6 times higher than the Irish general population and Irish Travellers account for at least 11% of all suicide deaths in Ireland. Considering they are an ethnic minority and make up less than 1% of the population, we found these figures extremely alarming and were compelled to try and work with the community on this issue through the Lived Lives model.

Engaging the Irish Traveller Community

For this project, we worked with Pavee Point, a national non-governmental organization made up of members of the Travelling, Roma and majority settled communities who work together addressing the needs of Irish Travellers and Roma in Ireland. Irish Travellers are often described as “hard to reach” in terms of research. We knew from the novel methodology of the All Ireland Traveller Health Study, a systematic study of Traveller health, that co-collaboration and peer researchers would be key in the success of the project. We established a planning and consultation forum with representatives from Pavee Point including health workers and youth workers. It was through the members of this forum and their strong links and relationships of trust with families in the Traveller Community that allowed the Lived Lives project team access and opportunities for engagement.

As part of our engagement strategy, we visited Pavee Point a number of times co-facilitating discussion groups and workshops with different groups from the Traveller Community such as youth groups and Traveller health workers to gain their insights into the issue of suicide within their community. On one occasion, we visited “halting sites” around County Dublin where some members of the Traveller Community live in caravans often in very unsafe environments with limited access to things such as clean water and heating. This was a pivotal moment in engaging with this “hard to reach” population as we gained a true perspective of the struggles facing many Travellers today and also had the opportunity to establish a relationship of trust by affording the Travellers an opportunity to be heard, on their own terms and in their own environment.  As this trust increased, we worked collaboratively and closely with members of the Traveller Community and members of Pavee Point to plan the most effective way for the project to materialize with relevance and significance for their community.

Outcomes and future directions for Lived Lives

The Lived Lives artworks are always adjusted to context depending on what community the exhibition is taking place in. In this instance, they were recast to reflect the issue of elevated Traveller suicide rate and there was a week-long Lived Lives installation in Pavee Point. Each day of the project involved mediated group tours of the work. This consisted of participants being walked and talked through the works by the artist, scientist and Lived Lives Team. These tours were followed by facilitated round table discussions with each group, often amid the physical artworks, where there was an opportunity to discuss reactions to the exhibition and share thoughts about the issue of suicide within the Traveller Community. The exhibition was open to the public and we also invited suicide prevention policy makers, clinical directors from mental health services, leaders from the arts and cultural sector, funders, medical students, art students, suicide bereaved families and members of the Traveller Community of all ages to participate throughout the week.

High levels of engagement and co-ownership were evident throughout the installation including instances where Travellers who had participated in the mediated exhibition returned with others and gave their own version of mediated tours. The project was evaluated throughout by participating members of the Travelling Community as well as evaluators from the fields of visual arts and suicide research.  Feedback suggests that the model reached its target audience and was effective in generating new knowledge and understanding around suicide for Travellers in a way that is applicable to other IEMs globally.

Lived Lives: A Pavee Perspective also demonstrated the ability of this work to engage “hard to reach” and “high risk” groups, often excluded from research. We hope to continue to disseminate the Lived Lives practice and work with other stigmatized and marginalized individuals, groups and communities where there are elevated suicide rates.

Why we chose to publish with Wellcome Open Research

Writing up and publishing interdisciplinary research can pose a major challenge for researchers as this type of work often does not fit the traditional “Introduction, Methods, Results, Discussion format. We feel that to truly understand and “get” the concept of the Lived Lives project, images and video footage of the deep engagements involved are essential for the reader. Where many conventional publications would not be open to this mixed-methods format, Wellcome Open Research embraced it, allowing the reader to fully immerse themselves in the work.  The quick turnaround time involved in publishing on Wellcome Open Research was also very appealing as we feel the work is very current and topical, something which may have been lost with the long wait often associated with traditional academic publications.

Finally, the “open access” element of the Wellcome publishing platform is very important to us as interdisciplinary work of this nature is never about the venue, but about the reach. We would like our work to be easily and freely accessible for everyone in the hopes of inspiring others to embrace arts-science methodologies, as The Lived Lives research is as much about life as it is about death. We feel the methodology could be applied to many sensitive topics that deal with feelings of loss, and where identity and validation are overlooked or eclipsed by the silence of stigma.

You can find out more information on the overall Lived Lives project here.