Discover Society

Yasmin Gunaratnam (Goldsmiths, University of London)

In an undated lecture, ‘The Problem Patient’, the doctor Cicely Saunders, presented her observations of people who had died at St Christopher’s Hospice, in South East London, between 1978-9, and whose symptoms had been difficult to manage. One of the patients was a Polish woman, “with an extermination camp background who later developed severe depression with hallucinations, helped by E.C.T.” (Electroconvulsive Therapy). Elsewhere in the boxes and files held at the Cicely Saunders Archive, at King’s College (London), were other traces of migrants. In 1976, there was Mrs. J, aged 47 “A charming West Indian: in pain, tearful and depressed. Much alone with her illness.” Saunders noted that Mrs. J was “anxious to go home to Jamaica but eventually realized she was not going to get better and was happy to stay.” The “calm and stoical” Mr. E, from Nigeria, was forty-one years old and dying from liver cancer in June 1981. Mr. E’s wife was in Nigeria and he was living alone in London; “very worried” by his illness and “says he is in God’s hands”, Saunders wrote. After the summary of a patient with an Egyptian surname, whose family was described as ‘like a kind of mafia’, are two words: ‘Another loner’.

I discovered these poignant, unsettling fragments when doing research on transnational dying for a British Academy Fellowship in 2013. The ‘Case Stories’ project was interested in what those in neurosciences and palliative care refer to as ‘social pain’ and social scientists call ‘social suffering’ – broadly speaking, the pain that results from social estrangement. In palliative care, social pain has been discussed mainly with regard to feelings of social isolation, loss and worries about money. In the social sciences, attention is given to how people live with the consequences of exclusion and the hurt, loss and stigmatization that results from social, economic and status hierarchies. What is especially interesting about the neuroscience research is the finding that physical and social pain – the latter defined as “the pain experienced upon social injury when social relationships are threatened, damaged or lost” (p.294) – share some of the same neurological circuits.

In my qualitative research with socially disadvantaged dying migrants and care professionals in English cities, I became increasingly aware of how expressions of social pain and suffering were folded into oral histories. However, researching such experiences is challenging. As the anthropologists, Arthur Kleinman, Veena Das and Margaret Lock, have pointed out we do not have an adequate language in the Western world to describe what it is like to live under prolonged conditions of hardship and exclusion. In the study, ‘The Weight of the World’, the sociologist, Pierre Bourdieu, argued that living with the ‘small misery’ of inequality and injustice is often ignored, downplayed or accepted as an inevitable and ordinary part of life for those on the social margins. “I pay it no mind”, is how one Jamaican born woman that I interviewed, dealt with the overt racism she had faced in the 1960s.

Yet, despite social pain and suffering being ‘ordinary’, as Cicely Saunders’ early observations suggest, these experiences can become more apparent at times of illness and dying, as people evaluate and question their lives, or, perhaps, because of the intimacy between physical and social pain. It is also the case that biochemical changes in the body as a result of disease or medication can loosen inhibitions, as in the case of the terminal hallucinations noted by Saunders and by those caring for loved ones.

Migrant stories

The life stories that I have heard from migrants are varied. Alongside the greater social and economic opportunities and camaraderie of migration, there are stories of living with impoverishment, hazardous working conditions, racism, loss and disappointment. Mr Anand, who had been born in India and had come to the UK in the 1960s, spoke with warm nostalgia of his early years in London, “There was absolutely no dearth of friends at that stage, because we were all in the same boat”. In later life, he spent most of his days alone, troubled by regrets, including his neglect of his siblings and parents in India. “I say to myself “I wish I did this, I wish I’d done that”. What have I achieved in life? Nothing really.”

For others, the compulsion to show gratitude for care is another facet of the experience of social suffering, which can be a defensive response to contemporary ‘welfare myths’ and the stigmatization of migrants as ‘health tourists’ who exploit health services. Ricardo, a recent Portuguese migrant from Brazil, was working as a cleaner when he was diagnosed with advanced cancer, soon after migrating to the UK. Through an interpreter, Ricardo told me that in Brazil he would have had to sell his house to pay for the cancer treatment he was now receiving. Throughout the interview he made a great effort to tell us that he was a good patient who followed his doctors’ advice closely. He did not smoke or drink. Towards the end of interview, when talking about the small details of his everyday life – the manioc that he had spotted with delight in a local market, his granddaughter in Brazil asking him on Skype when he is going to take her to McDonalds again – he broke down, sobbing uncontrollably.

My interviews with care professionals elicited accounts similar to those recorded by Saunders, including caring for migrants who wanted to return ‘home’ to die or to be buried. While there can be cultural and religious prescription behind such end of life plans, they can convey ambivalent feelings of loss and belonging. Melanie, a white British nurse, working in a London teaching hospital, talked about a Jamaican-born patient who wanted to be buried in Jamaica. The woman had told Melanie that England was too ‘cold’. For her final resting place, she needed to feel warmth and to be around people who knew and loved her. Melanie sensed that her patient was not wanting to offend her and that the ‘warmth’ that she longed for was not only about the climate.

Burial plans for asylum seekers and refugees can be particularly emotionally charged, including what the anthropologist Maurice Eisenbruch has called cultural bereavement - feelings of guilt for surviving and also loss for the people, culture and places left behind. In the midst of these powerful emotions there can be practical paradoxes and considerations, such as knowing that it is only in death that you can safely return to the country from which you fled but which you still think of as home; or your spouse having to disregard your last wishes, because she and your baby desperately need what little money is left.

A disturbing quality of social pain and suffering is that its personalisation can also cut people off from wider social support. The social scientists, Liz Frost and Paul Hoggett, have called this ‘secondary damage’, which is “experienced when the defences an individual deploys to cope with hurt and loss have destructive consequences for self and others and therefore separates the person from their sense of relatedness/belonging to the group” (p.442). At the end of life, the secondary damage of social suffering can effect caring relationships. The following story from a doctor is about a trafficked sex worker from Russia, with advanced breast cancer:

“She didn’t disclose much information about her social circumstances but seemed socially isolated, without family support. She had severe pain and existential distress. Attitudes from several staff members were judgmental about her appearance and priorities – she was concerned about how she looked and what clothes she would wear. Unhelpful assertions were made about her returning to work in the sex industry and the effect this had on her chemotherapy treatment, without any attempt to ensure or consider her safety in terms of infection or to offer her financial assistance. She was understandably suspicious of subsequent encounters with health care staff. I tried to negotiate a pain management plan and get her community support. I tried to gain her trust and give her back some element of control.

She died several weeks later in an acute medical ward with poorly controlled symptoms.”

Migration, illness and dying

While research into migrant experiences of illness and dying can contribute to improve care giving, it is also important to bring these often-neglected matters more directly into discussions and research on immigration. While necessary attention has been given to chronicling migrant lives as they unfold in the crossing of national borders, in detention centres or in early periods of settlement, we still know comparatively little about how migration is experienced over a lifetime. Are the effects of moving to a new country ever over and done with, especially at times such as this, when there is an increase in anti-migrant sentiment? Does the experience of estrangement necessarily lessen if migrants become citizens and die in the countries in which they have settled? What might we learn about home-making, belonging and multicultural hospitality from dying migrants and those who care for them?

When does the experience of migration end?

 

Yasmin Gunaratnam teaches in the Sociology Department at Goldsmiths College. Death and the Migrant was published by Bloomsbury Academic in 2013. You can find out more about the Case Stories project by following this link.

Image Credit: ‘Grandmother’ (credited to and by kind permission of Nela Milic).