Jürgen Pieters reviews Being Ill: On Sickness, Care and Abandonment by Neil Vickers and Derek Bolton (Reaktion, 2024).
Neil Vickers’ and Derek Bolton’s Being Ill is an extremely rich book – rich in learning and methodology, rich in examples, rich in important insights. The book’s central message is already contained in its subtitle: On Sickness, Care and Abandonment. When we fall victim to a major disease, whether it be mental and/or bodily, the authors claim, one of two possible outcomes will await us: we will either be cared for or be left alone – in both cases by those whom we feel close to. The bad news is, for those of us living in that part of the world the book’s authors call WEIRD, the latter possibility appears to be much more likely than the former.
WEIRD
WEIRD is the American anthropologist Joseph Henrich’s acronym for countries that are Western, Educated, Individualistic, Rich and Democratic. The adjective refers to the part of the globe that contains North and Western Europe, the North American continent, Australia, and New Zealand. According to Henrich, WEIRD societies define human individuality in terms of sovereign selves who strive to have autonomy and control over what they do. In this individualistic model, according to the authors, the meaning of health and illness are construed in the most stark opposition possible. In this logic, health is the self-evident norm that WEIRD people automatically take for granted, whereas any illness is seen as an experience of personal failure, something one should feel ashamed of, or even personally guilty of.
In WEIRD societies, the very ill quite often become true pariahs, Vickers and Bolton write. The authors refer specifically to the story of David Rabin, a South-African endocrinologist working in the US, who in 1979 was diagnosed with ALS (amyotrophic lateral sclerosis, also known as motor neurone disease (MND) or Lou Gehrig’s disease, a terminal neurodegenerative disorder that results in the progressive loss of control of bodily movement). As Rabin’s condition worsened, so did his isolation, both professionally and in the ever-thinning circle of people he used to consider his friends.
Writing about what happened to him, Rabin and his wife Pauline, described their situation as marked by what they thought of as ‘the pariah syndrome’ (Rabin and Rabin 1985). The story of Rabin (later also the topic of a touching family memoir by daughter Roni) is central to the third chapter of Being Ill, where Vickers and Boltonpresent the syndrome in question as ‘the most extreme expression of abandonment with which all ill people are threatened’ (Vickers and Bolton, 2024, 126).
Illness memoirs
Vickers’ and Bolton’s powerful analysis of the threat of abandonment, which can follow certain illness diagnoses, took root in several conversations the pair had about the numerous illness memoirs published in the Anglophone world in the past few decades. The authors of Being Ill are colleagues at King’s College London’s Centre for the Humanities and Health, where Neil Vickers (previously an epidemiologist) is a professor of literature with a specific interest in medical issues. Derek Bolton a (recently retired) professor of philosophy and psychopathology, works also as a clinical psychologist at the Institute of Psychiatry and the London-based Maudsley Hospital. Among Vickers’ earlier notable publications is his book Coleridge and the Doctors, while more recently, Bolton published, together with bio-ethicist Grant Gillett, a book-length essay on The Biopsychosocial Model of Health and Disease (more about which later).
What struck Vickers and Bolton in their discussions of recent illness memoirs – were the references made, almost without exception, to memoirists feeling they had been shunned or let down by intimate friends on account of their illness. ‘There is no doubt that the ill and their close others are marginalized in Western societies’, Vickers and Bolton write, ‘at immense cost, both financially and morally’ (Vickers and Bolton, 2024, 126).
The opposite of abandonment, in the conceptual analysis that Vickers and Bolton offer in their book, is care. Care forms the central topic of Being Ill’s second and (in my view) strongest chapter.Adding to earlier work in the philosophy and ethics of care by scholars like Berenice Fisher and Joan Tronto, the authors take their cue from medical anthropologist Arthur Kleinman. In a contribution to The Lancet (published on the occasion of his retirement as a doctor in 2017) Kleinman stressed the importance of what he called ‘presence’ in medical encounters, ‘the intensity of interacting with another human being that animates being there for, and with, that person’ (Vickers and Bolton, 2024, 75).
Mirroring, holding, compassion
For Vickers and Bolton, care involves three main aspects: mirroring, holding and compassion. Each of these point towards the intersubjective nature of the phenomenon, where caring is sharing.
Drawing on Merleau-Ponty’s concept of the ‘shared body schema’(‘The Chld’s Relation to Others’)), Vickers and Bolton present care as ‘dyadic state’ (Edward Tronick), a dynamic process in which shared meaning is made, a process of co-creation. An earlier title of the typescript of Being Ill was Shared Life and the Experience of Illness.
Mirroring, refers to what the authors of Being Ill define as a ‘set of processes by which two people indicate their awareness of one another’ (Vickers and Bolton, 2024, 77). They take the concept from the domain of infant research, where mirroring refers to the mutually defining practice of mothers and babies. Infants mirror what their primary carers show them, in a complex interplay of bodily and mental activities that simultaneously stress the child’s dependence on the mother and its capacity to grow into independence. This basic idea underlies Vickers’ and Bolton’s concept of care in the adult world. If we want to understand more properly what care is, they argue, we should not overstress the basic helplessness of the person cared for. A productive definition of care will have to safeguard pockets of autonomy and, hence, the possibility of self-care.
Vickers and Bolton draw heavily on infant research for their analysis of adult care, attempting to exchange conventional medical ideas of care as ‘a call for help arising from some impairment or loss of function’ for a conception of care that stresses ‘the effort to enhance the self-organizing capacities of a needy other by forming a synergistic system with them’ (Vickers and Bolton, 2024, 29).
Holding, Vickers’ and Bolton’s second ‘pillar’ of care, also derives from the field of developmental child psychology, more specifically from Donald Winnicott’s reflections. In 2020, Vickers published an article on Winnicott’s understanding of the importance of holding in the British Journal of Psychotherapy and much of what he wrote there has left its marks on Being Ill. Vickers and Bolton make a strong case for the possibility of applying Winnicott’s theory of ‘holding’ to adult relationships in general, and to relationships of care with ill people in particular. In situations of illness, they write, the importance of ‘holding’ shows clearly, not only in the need to find a good ‘holding environment’ (the safe haven in which care can do its work unnoticed), but also in the importance of practices of ‘creative participation’ (Vickers and Bolton, 2024, 69). The latter, what Winnicott termed ‘play’, was said to enable caregivers and the persons they care for to establish and maintain meaningful relationships.
For Winnicott, the practice of holding is meant to allow infants to thrive. While that idea may sound strange in the context of severe cases of illness, this goal is precisely what Vickers and Bolton have in mind. Care is always directed at ‘thriving’.
The biopsychosocial model
On the third crucial aspect of care- compassion- the authors of Being Ill appear to have less to say than on mirroring and holding. However, they suggest compassion should be seen as co-existent with the other two aspects of care. In their usage, compassion becomes an umbrella term for all forms of behaviour that are governed by the principles of mirroring and holding. Compassion should not be reduced to feelings or a state of mind, they rightly claim.
Being Ill is a rich book. It brings inspiration in the conceptual analysis that it offers of a fundamental concept like care. Moreover, the book contains a welcome plea for a form of medical humanities that takes into account and engages dialogically, more than happens on an average basis, with the findings of the health sciences. Examples that Vickers and Bolton give throughout their book come from systems biology, epidemiology, social neuroscience and epigenetics:
‘If the medical humanities are to blossom’, they write, ‘they need to engage not only with a wide range of critical theories (the ‘secure base’ of humanities and social science scholars everywhere) but with scientific discoveries like these.’ (Vickers and Bolton, 2024, 19)
Practising what they preach, Vickers and Bolton devote several pages of their book to the inspiration they drew from the biopsychosocial approach that was first developed in the late 1970s by the American psychiatrist George Engel. What the model stresses, Vickers and Bolton emphasise in the fourth and final chapter of Being Ill, is not only the complexity of the interplay between biological, psychological and social determinants of health and illness, but also the crucial role of care in the organisation of a society that wants to improve health and redress the blatant inequality of the access to it.
In the conclusion to their book, the authors call for political action: ‘If we want there to be less illness in the world, we need less inequality. And if we want to manage illness better, we need to take stock of what the health sciences are telling us about the impact of social adversity on the body.’ (Vickers and Bolton, 2024, 2018) Being Ill is not just a rich book, it’s an important one as well, one that deserves to receive an audience that goes far beyond the scholarly domain of health and medical humanities.
About the author
Jürgen Pieters is professor of literary theory at Ghent University (Belgium), where he teaches a course on literature and care and where he directs the global health humanities network CHARM (Consortium for Health Humanities, Arts, Reading and Medicine – www.charm.ugent.be) . He is the author of Literature and Consolation. Fictions of Comfort (Edinburgh University Press, 2021). He is currently working on a new book on bibliotherapy.
References
Bolton, Derek and Grant Gillett. 2019. The Biopsychosocial Model of Health and Disease. New Philosophical and Scientific Developments. Cham: Palgrave.
Fisher, Berenice and Joan C. Tronto. 1990. “Toward a Feminist Theory of Caring”, in Circles of Care: Work and Identity in Women’s Lives, eds. Emily K. Abel and Margaret Nelson, 36-54. Albany: SUNY Press.
Henrich, Joseph. 2020. The WEIRDest People in the World: How the West Became Psychologically Peculiar and Particularly Prosperous. New York: Farrar, Strauss and Giroux.
Kleinman, Arthur. 2017. “Presence.” The Lancet. 386 (10.088), 2466.
Merleau-Ponty, Maurice. 1964. “The Child’s Relation with Others”, in The Primacy of Perception and Other Essays on Phenomenological Psychology, the Philosophy of Art, History and Politics, eds. William Cobb and James M. Edie, 96-155. Evanston: Northwestern University Press.
Rabin, Pauline L. and David Rabin (eds.). 1985. T0 Provide Safe Passage: The Humanistic Aspects of Medicine. New York: Philosophical Library.
Rabin, Roni. 1985. Six Parts Love: One Family’s Battle with Lou Gehrig’s Disease. New York: Scribner Book Company.
Tronick, Edward Z. 2007. The Neurobehavioral and Soial-Emotional Developments of Infants and Children. New York: Norton and Company.
Vickers, Neil. 2004. Coleridge and the Doctors: 1795-1806. Oxford: Oxford University Press.
Vickers, Neil. 2020. “Winnicott’s Notion of ‘Holding’ as Applied to Serious Physical Illness.” British Journal of Psychotherapy 36 (4): 610-620.
