Yasmin Gunaratnam, a sociologist at Goldsmiths College, University of London, UK, explains her new British Academy Fellowship research.
A survivor of a concentration camp resists a nasal cannula delivering oxygen. The procedure brings up traumatic memories. An Indian teacher speaks to his hospice nurse about his humiliation at having spent his working life in the UK as a bus driver. He had been rejected from all the teaching jobs that he applied for. “What can I say to him that is going to make a difference?” his nurse asks.
Since I began my research in palliative care in 1995, I have been intrigued by such stories that have come up time and time again in my interviews with patients, family carers and professionals. How might the pain of social inequality and injustice be experienced and manifested at the end of life for migrants?
This is a question that is central to my British Academy Fellowship project. In the project I am using a combination of archival research, consultation with those working in palliative care and migration, and my narrative interviews with patients, carers and professionals. The archival research is based in the Cicely Saunders’ Archive at King’s College London. I have been slowly going through the materials in the archive with the aim of finding out more about Cicely Saunders’ concept of total pain. Total pain recognises that pain can be physical, psychological, social and spiritual. It also recognises how pain can accrue over a lifetime.
In so many ways Cicely Saunders was ahead of her time. She was a doctor who often carried a tape recorder to record patients’ stories. She used these stories and other qualitative materials, such as patients’ poems and artwork, in developing her ideas and approaches. Reading through her notes, lectures and the articles and books that she was reading, it is clear that Cicely was aware of the painful effects at the end of life of social inequality, displacement, war and racial persecution. She has credited her relationship with David Tasma, a Jewish refugee from Warsaw, as being a source of inspiration in her thinking about hospice care. However, these aspects of pain do not seem to have been fully explored or discussed in palliative care. With increasing migration, transnational dying is becoming more prevalent. It seems especially important to better understand social pain.
In the next few months, I plan to collect and bring together ideas and research on social pain. I also want to produce what I am calling ‘case stories’. Each case story will draw upon empirical research and first person accounts. These will be woven together into a fictionalised short story format. The case story method draws upon an emerging evidence base from narrative medicine approaches that use literary texts and reflective writing to cultivate skills in empathy among care practitioners. I am hoping that the stories can be used to promote greater awareness and discussion, particularly of experiences of pain that can be difficult to put into words. If you want to find out more, or perhaps donate a story to the project, contact Yasmin Gunaratnam.
To find out more…
Some of the sociological ideas in this post can be found in a related article, ‘Learning to be affected: social suffering and total pain at life’s borders’.
‘Death and the migrant – borders, bodies and care’ by Yasmin Gunaratnam will be published by Bloomsbury Academic on 7 November 2013.