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The Reading Room: A review of ‘The Good Story: Exchanges on Truth, Fiction and Psychotherapy’

17 Jun, 15 | by cquigley


The Good Story: Exchanges on Truth, Fiction and Psychotherapy by Arabella Kurtz and J.M. Coetzee

London: Harvill and Secker, 2015.

Reviewed by Vivek Santayana, The University of Edinburgh


Abstract: Arabella Kurtz and J.M. Coetzee’s The Good Story is a dialogue between a consulting clinical psychologist with an interest in literary studies and a novelist with an abiding concern with psychoanalysis and moral psychology. Through their exchanges, Coetzee and Kurtz explore the ways in which fiction and psychotherapy overlap, such as in their mutual concern with how history, memory and the self are mediated through language. They also enact conceptual disagreements between psychotherapy and fiction, particularly with their commitment towards the existence of an external truth. These exchanges suggest that while literary practice and psychotherapy can benefit each other tremendously, significant challenges remain in bridging the conceptual gulf between them.

The Good Story is a series of exchanges between Arabella Kurtz and J.M. Coetzee that explore the possibility of dialogue between psychoanalytic psychotherapy and literary fiction. Both Kurtz and Coetzee, in the course of their correspondence, represent their trade: Kurtz is a consultant clinical psychologist completing training in psychoanalytic psychotherapy while Coetzee is a novelist and critic with an expansive career to date in fiction and non-fiction. Both Kurtz and Coetzee are deeply interested in what they might potentially gain from each other, as Coetzee has an abiding concern with moral psychology and psychoanalysis, and Kurtz is interested in what psychotherapists can learn from interpreting narratives through literary techniques. Their exchanges, often circuitous and digressive, examine the ways in which psychotherapy and literary fiction overlap, points at which they differ and, subsequently, the respective roles of the writer and therapist in listening to and finding truth in these narratives.

Coetzee and Kurtz’s exchanges are ambitious in the range of topics they address, such as the nature of truth in fiction and psychoanalysis, the method and role of psychotherapy, the authenticity of narratives, the construction of the self, the psychology of groups and the broader political and historical critique for which psychoanalysis can be used. To begin with, Kurtz identifies several ways in which literary fiction and psychotherapy overlap. The therapeutic encounter, for Kurtz, is a creative process, and the psychotherapist must be sensitive to the internal coherences and frustrations of patients’ narratives and the ways in which they manifest themselves within the formal characteristics of the narratives. Moreover, knowledge of the past, whether it is through memory-traces or historiography, is constructed and mediated through narratives. Both psychoanalysis and fiction are interested in how the self creates a narrative to give the past coherence and structure in order to construct its own identity. Coetzee and Kurtz are divided on the truth of these kinds of narratives, and they further disagree on the nature of truth itself (an external, ontological truth versus an intersubjective, aesthetic one). Nevertheless, it is clear from their exchanges that both literary practice and psychotherapy have a mutual concern with interpreting narratives and serving a specific therapeutic function, and hence mutually inform each other. This idea chimes particularly with Rita Charon’s work in the field of narrative medicine.

In some of the middle exchanges, these themes are drawn into a pointed postcolonial question about descendants of settler communities in South Africa, the United States and Australia – nations with which Coetzee has some degree of affiliation – and how these societies deal with a history fraught with genocide. These troubled histories recur in the present and haunt these societies. Coetzee and Kurtz examine, through the lens of defence mechanisms such as splitting and repression, the rhetorical strategies societies use to integrate self-affirming narratives of their present with an ethical disavowal of the atrocities committed by their forebears. One of the debates concerns the nature of regression within group psychology, and whether nationalism is a force that is inherently regressive or whether there is a possibility of positive identity. These discussions are grounded in an awareness of contemporary political problems, such as Australia’s oppressive immigration policies towards asylum seekers. Coetzee argues that all forms of nationalism and group-thinking are inherently regressive (as in the case of armies or gangs of children in schools), whereas Kurtz maintains that there is a positive, non-regressive possibility of group thinking (drawing from institutions like the NHS or the analysis of Oedipal relationships). But there is nevertheless a methodological problem underlying both positions, which both Coetzee and Kurtz discuss in due course, and that is the possibility of generalising from the analysis of an individual psyche or the dynamics of specific institutions to the much broader group psychology of a nation or society.

The exchanges between Kurtz and Coetzee are also eclectic in their breadth of references and interests. They draw from numerous literary examples, including Cervantes, Dostoyevsky, D.H. Lawrence, Hawthorne and Sebald, a number of compelling case histories as well as a body of psychoanalytic theory such as Sigmund Freud, Melanie Klein, Wilfred Bion, Isabel Menzies Lyth and Paula Heimann. There are clear philosophical themes, drawing from Plato, Kant and Levinas, which inform Kurtz and Coetzee views on truth and intersubjectivity, even though they are for the most part not explicitly stated. One of the most interesting discussion centres on Coetzee’s reading of Thomas Nagel’s paper What is it like to be a bat?, through which the author questions the limit of human empathy and projection in knowing ‘the Other’, thereby questioning the extent to which a psychotherapist can truly know what it is like to be the patient. Coetzee frequently challenges Kurtz on the idea of truth, and insists that rather than claiming to know the self and how it relates to others, psychotherapy should concede the fictitiousness of the narratives with which it engages.

The disputes between Kurtz and Coetzee are particularly instructive as they reveal how literary fiction and psychotherapy can diverge (at least in the way Coetzee and Kurtz characterise them). They disagree on the matter of truth, for example, as Coetzee is nostalgic for an external truth (either an event itself or some philosophical truth) that is inaccessible to narrative fictions like memory or psychotherapy. Kurtz on the other hand is agnostic of any such external truth and is instead concerned with a dynamic, inter-subjective notion of truth that represents the meaning-making process of the subject. The grounds of their disagreement seem subtle yet significant. Kurtz and Coetzee have difficulty finding common ground on the issue as well as a common terminology with which to address these questions. Their disagreements seem to suggest that a dialogue between psychoanalysis and fiction needs much more than a mere overlap between the methodological concerns with narrative and the self, but necessitates a reconciliation of distinct philosophical premises. The exchanges between Kurtz and Coetzee resemble a Socratic dialogue that foregrounds the challenges faced by psychotherapy and literature in bridging the conceptual rifts between them, while also exploring the tremendous benefit potentially achieved for both disciplines by conversing with each other.

However, one aspect of this dialogue between Coetzee and Kurtz that is particularly vexing is the apparent self-consciousness of its own structure. This is true of most of Coetzee’s novels, which employ metafictional devices to question their own ontological status as texts. It is particularly intriguing to apply what Coetzee and Kurtz say (about fiction, memory and constructing the self, for example) to the exchanges themselves (such as Coetzee’s recollection of his childhood or his account of his relationship with South Africa). Coetzee’s accounts of his life or opinions in these exchanges beg the question of whether or not these accounts are themselves fictions. This is complicated further by the fact that Coetzee seems to be channelling his own fictional narrator, Elizabeth Costello in The Lives of Animals, in his discussion of Thomas Nagel. All of this begs the question of how much Coetzee’s position should be taken at face value. Moreover, there are aspects where his argument seems to invite resistance and scepticism. For example, in light of postmodern rejections of an external, objective truth (something that Coetzee seems to have foregrounded in his previous novels), it is tempting to push against Coetzee’s nostalgia for truth. The most remarkable thing about The Good Story is that it not so much the decisive arguments that Coetzee and Kurtz make, but the revealing contradictions and ambiguities behind what they say.


The Good Story: Exchanges on Truth, Fiction and Psychotherapy by Arabella Kurtz and J.M. Coetzee

London: Harvill and Secker, 2015.




The Reading Room: Seamus O’Mahony on Richard Asher

10 Jun, 15 | by cquigley


Brimful of Asher

Seamus O’Mahony, Consultant Physician, Cork University Hospital


Richard Asher: Talking Sense. London: Pitman Medical, 1972.

A Sense of Asher. London: British Medical Association, 1984.

The Royal Society of Medicine recently (3 November 2014 – 24 January 2015) held an exhibition called “Richard Asher (1912-1969): A Celebration”. Asher, an English physician and writer, is mainly unknown to those under fifty. He was appointed as physician to the Central Middlesex Hospital in 1943, and worked there until his resignation in 1964. He was a general physician, with interests in haematology, endocrinology, hypnosis, and the physical basis of mental illness. He argued passionately in favour of generalism, and warned against what he saw as increasing over-specialisation. Asher had a unique, aphoristic, literary style: he wrote articles which were easy to read, witty, and which often challenged received opinion. He had a passion for clear, elegant English, but admitted that his prose style did not come easily. His essays ranged from the purely clinical to the speculative and philosophical; he wrote not only for the medical journals, but also the popular press. He was an inspirational clinical teacher, and an accomplished and much sought-after lecturer. He is probably best known for coining the term “Munchausen’s Syndrome”.

One of Asher’s clinical commitments was as consultant in charge of the mental observation unit at the Central Middlesex, where he saw an average of 700 patients a year. This experience provided him with the clinical material for such articles as “Myxoedematous Madness” (1949), “The Physical Basis of Mental Illness” (1954), and, of course, “Munchhausen’s Syndrome” (1951). In 1964, the hospital authorities decided to appoint a psychiatrist to take charge of this unit. Asher was deeply offended, and resigned his consultant post. His remaining years were plagued by ill-health and melancholy; he took his own life at the age of fifty-seven.

Asher described himself as “a physician more at home at the bedside than in the laboratory”, and wrote many articles on what he regarded as the heart and soul of clinical medicine: the history and physical examination. He advised his students and readers to ignore the textbooks and to think for themselves. Most of his essays were inspired by simple clinical observations, prompting the thought: “Nobody seems to have commented on the fact that …” He argued for the supremacy of experience and noticing. He inspired such famous protégés as Jonathan Miller and Oliver Sacks.

If Asher had a passion for detail in the history and physical examination, he had an even greater passion for clarity of expression, and the correct use of words. He was modest about his abilities as a writer, claiming that “the standard of medical writing is so low that a doctor literate enough to put on paper something that can be read and understood without much suffering is soon looked on as a literary giant of cultured scholarship.” He often pointed out that “style” in prose was the result of painstaking hard work and much re-writing. He was, observed the medical journalist Ruth Holland, proof of the truth of C.E. Montague’s maxim: Easy reading, hard writing.

Asher abhorred obscurity, slip-shod thinking, jargon and inelegant prose. Indeed, he listed obscurity as one of “The Seven Sins of Medicine” (1949), the other six being Cruelty, Bad Manners, Over-Specialization, Love of the Rare (Spanophilia), Common Stupidity, and Sloth. He noted how obscurity advanced academic careers: “Remember that the harder anything is to understand, the more readily will committees allocate money to it. Much sensible medicine is obvious, but the obvious does not impress.” He could have been accused of biting the hand that fed him when he wrote a piece for the BMJ called “Why are medical journals so dull?” (1958). He wrote that journal authors “clog their meaning with muddy words and pompous prolixity …”

He valued clarity in thought as much as plainness of expression and elegance of style. He was a student of formal logic, taking inspiration from such works as Rupert Crawshay-Williams The Comforts of Unreason (1947), Robert H. Thouless’s Straight and Crooked Thinking (1930), and Lewis Carroll’s Symbolic Logic (1896). He was aware of the discomfort caused by cognitive dissonance: “Some beliefs are cherished a long time before some pundit kills them for us, and the extraction of a firm rooted belief is as unpleasant as the removal of an impacted wisdom tooth.” He derived his own word – “apriority” – to describe a kind of lazy thinking, particularly the notion of treatments that had a theoretical reason for why they might work, but for which there was no evidence that they did work. He was pessimistic about changing doctors’ thinking: “It has been held by some teachers that rational thinking in medicine would be improved if doctors were taught logic. I rather doubt this. Most of our ideas are accepted because they are convenient or likely, and not because of logical reasoning.” Asher was friendly with Richard Doll and Archie Cochrane, and was a champion of the concept of Evidence-Based Medicine, decades before the phrase was coined.

Asher had an uncomfortable relationship with psychiatry, culminating in the disastrous termination of his duties as physician in charge of the mental observation unit at the Central Middlesex. He wrote that psychiatry is “regarded by other doctors with a mixture of suspicion, reverence, and ridicule”. He particularly disliked such phrases as “Psycho-dynamic” and “psycho-biological” relationships: “The use of those key words lends an impressive but nebulous air of humane profundity to your utterances and conveys that ordinary doctors are unsympathetic and remote beings with no interest in their patients’ feelings.”

He agreed, however, with the psychoanalyst Michael Balint that the most important therapy at the doctor’s disposal was the doctor himself. He doubted, however, that “communication skills” could be taught:

It can be learnt by experience and to some extent by watching great doctors handling their patients, but it cannot be taught like pharmacology. All the power of tongue and pen, and all the wisdom of textbook and lecture can never teach a doctor the knowledge of when to probe and when to leave alone, when to chide and when to reassure, when to speak and when to keep silent. They are private mysteries with a different solution for every one of the million permutations of personality involved between a doctor and his patient. (“Talk, Tact and Treatment” [1955]).

This passage encapsulates Asher’s enduring appeal. His assertion is clearly and elegantly expressed, it questions received opinion, and is based on decades of clinical experience.

Asher believed that medicine’s dominion was limited. He argued against screening, “fussing” over health, “vain strivings after longevity”, and aggressive interventions in patients with incurable cancer. He knew that medicine had little to offer for many patients, and admitted ruefully that “it is better to believe in therapeutic nonsense than openly to admit therapeutic bankruptcy.”

Two collections of his essays and articles (Talking Sense [1972], A Sense of Asher [1984]), are both long out of print. Asher’s students are either of advanced age or dead. Decades on, however, his prose still sparkles. He mocked what he saw as pompous, illogical and just plain wrong. His article on “The Dangers of Going to Bed” (1947) was hugely influential in ending the routine practice of prolonged bed-rest, with all the dangers listed listed by Asher. He had a sharp instinct for humbug. What windmills would he tilt at in 2015? He would have been pleased by the triumph of Evidence-Based Medicine, but would have rebelled against the tyranny of protocols and guidelines, and Evidence-Enforced Medicine. He would have been horrified by the growth of the pharmaceutical industry, and by how easily it has suborned academic medicine and the journals. He would be dismayed by the slow death of medicine as a profession, and its imperceptible transformation into a service industry. He would have witnessed how the sins which he enumerated culminated in the catastrophe at Stafford. He would have been gratified that the Royal College of Physicians has belatedly come around to his view that physicians should be generalists first.

Asher did not feel appreciated within his profession, perhaps because his wit was confused with frivolity, and his clarity of expression mistaken for a lack of depth. Sydney Smith responded to a similar accusation: “You must not think me necessarily foolish because I am facetious, nor will I consider you necessarily wise because you are grave.” Come on, BMJ publications: why not re-issue the books?

The Reading Room: A review of ‘Pain and Emotion in Modern History’

2 Jun, 15 | by cquigley


Pain and Emotion in Modern History. Boddice R (ed). Basingstoke: Palgrave Macmillan, 2014


Reviewed by Dr Deborah Padfield

Visual Artist and Research Associate, UCL CHIRP Interdisciplinary Research Fellow, Slade School of Fine Art


Pain and Emotion in Modern History claims to be ‘a rich exploration of the affective expression of pain, the emotional experience of pain (with or without lesion) and the experience of others’ pain as pain (sympathy, compassion, pity, tenderness ‘ (p.1). Referencing and building on the work of others, for example Scarry, Moscoso, Bourke, Cohen and Hodgkiss, this book more than justifies that claim. It is a fascinating collection of essays from a variety of disciplines and practices, which, woven together, produce a profound discussion of pain and emotion.

Boddice starts from the premise that not only is pain difficult to communicate, but also to define, describing it as ‘at best a confusing label; at worst … hopelessly inadequate’ (p.1). What is refreshing is that the book attempts to unpack its complexities through a conviction that pain’s ‘polyvalence’ is expressed not only linguistically but ‘bodily, orally’ and ‘emotionally’ (p.1). The understanding and experience of pain is framed as socially, culturally and historically constructed. Boddice asserts that it is through the drive to communicate pain, to translate it into words, grimaces, images – the search for metaphors with which to capture it – we literally ‘figure out’ what it is. What I also find appealing about this work is its emphasis on the person witnessing as much as on the sufferer, thus acknowledging witnessing and suffering as inexorably interlinked.

The book draws on the expertise of a wide range of historians, literary and philosophical scholars, a practicing artist and those in the medical humanities from a variety of countries, to unpick and reveal intersects between pain and emotion. The result is a patchwork of perspectives building on and cross-referencing each other so that the sum is more than the parts.

Javiers Moscoso’s graphic descriptions of treatment for cancer pain in early Modern Europe highlight the tensions between local and official medical knowledge, and the desperation of those willing to undergo any treatment in the search for a cure, ranging from eating the ‘raw and palpitating flesh of local green lizards’ (p.20) to doses of between one and six spoons of arsenic, thus leaving themselves open to fraud and quackery (not irrelevant today). The fact that sufferers recovered from some of these terrifying practices highlights the power of hope, exercised within what Moscoso describes as a framework of emotion and fear. He does not get drawn into a detailed discussion of the ‘placebo effect’ but asserts the value of historians for illuminating interpretation of sources. He also alludes to the interplay between objective evaluation and subjective accounts provided by patients, paving the way for discussion of patient narratives, which is taken up in subsequent chapters. Already rich in detail and analysis, Moscoso argues convincingly that a greater historical analysis is needed of the ways in which fear and pain have been counterbalanced by promises and expectations, in what he terms an ‘economy of hope’ (p.31).

Continuing to place the understanding of pain within historical and cultural frameworks, Paulo Santangelo takes us to Late Imperial China, where he analyses the main terms used for representing physical suffering, revealing pain as located within the collective imagination and a ‘whole body-mind-heart’ system (p.36). Exploring this interaction of emotion and sensation, Santangelo builds on the work of Moscoso, Bourke and others, evidencing ways in which the perception and experience of pain is influenced by its cultural context. He reveals a semantic ambiguity within the Chinese figures for pain, which collapses physical, emotional and moral conceptions of pain expressing injury, wound, damage, and harm with distress, including sad-grief-distress, worried-grief distress and being broken hearted. Citing a range of Chinese medical treatises, Santangelo shows how many early texts express the belief that states of mind were able to influence physical pain. He concludes that the interconnection between body and heart-mind in early Chinese medical texts is ‘more strongly emphasized than in modern Western cultures perhaps because of the lack of a Platonic imprint of soul-body dichotomy‘ (p.47).

The current IASP definition for pain is up for scrutiny in the following chapter by David Biro, who asks whether affective states –‘construed as injuries to the mind – can trigger the same kind of pain as injuries to the body’ (p.53) Biro argues for a re-definition of pain broadened to accommodate psychological and emotional as well as physical injury to reflect feelings of injury to the person rather than to the body. Biro approaches the subject from a uniquely privileged position as physician, patient and literary scholar, making him particularly sensitive to the importance and difficulties of expressing, conceptualizing and defining pain and the critical relationship between language and experience. Using examples largely taken from literature as well as the paintings of artist Frida Kahlo, Biro illustrates how people suffering from psychological pain also use metaphors related to physical injury, and argues that there are neural correlates for both physical and psychological pain. He concludes ‘Pain is the aversive feeling of injury to one’s person and the threat of further, potentially more serious injury. It can only be described metaphorically’ (p.61).

The relationship between physical and psychological pain and the challenge of invisible pain are taken up by Joanna Bourke in the context of phantom suffering. She uses the case of Lieutenant Francis Hopkinson, a first world war amputee, to explore two debates within medical practice, that of the relationship between lesion and suffering, and theories of the emotional basis for suffering, which, she argues, prompted the current psycho-social model of pain.

Bourke charts how medical attention initially focused on Hopkinson’s physiological phantom limb pain and not on his psychological pain. Hopkinson, like many others, found it increasingly difficult to persuade his doctors that his suffering was ‘real’, which reflects the double layer of suffering for those with chronic pain; not only do they live with pain itself, but as Scarry highlighted (1985), the doubt of others serves to increase pain. Bourke relates how medical reports increasingly reported Hopkinson as of a ‘marked neurasthenic type … highly introspective type and very resentful’ (p.72). The problem, as Bourke clearly shows us, is that Hopkinson came up against the privileging of physiological injury over emotional injury and the clinical beliefs of the time that stump and phantom limb pain were essentially ‘neurotic’ in nature. What is more shocking is the conclusion of R.D. Langadale Kelham, who in the 1950s carried out a four year study of 200 men with phantom limb pain, and concluded that the person affected was ‘more often than not a person with an unsatisfactory personality. … who, becoming obsessed by his symptoms, and brooding upon them and his disability, tends to dramatise their degree, using undoubted exaggerations in his description of his sufferings’ (cited p.73). Bourke’s fascinating journey through the life of Hopkinson ends with the conclusion that even though one might have expected him as a white male from a privileged class who had served as an officer to have elicited sympathy, the tragic reality was that ‘the invisibility of his wound – his stump seemed to be ‘normal’ and the limb that burned like fire did not exist – trumped all scientific theorizing. Theories about physiological pain pathways, psychiatric pathologies. psychosomatic symptoms … failed to ease suffering that was anything but ‘phantom’’ (p.84).

The book moves from the intensity of the microscopic narrative to Wilfred Witte’s macroscopic review of the treatment of phantom limb pain from the beginnings of the nineteenth century to the present day, where the bio-psychosocial model and multi-disciplinary treatment have become the norm. Some of the now shockingly negative attitudes Bourke described are echoed here with Witte reporting amputees with phantom limb or stump pain being described by physicians as ‘abnormal’ or ‘deficient’. The chapter ends on a hopeful note with the Sub–Committee for Stump Nerve Pain of Amputees (1968 – 1970) and the Federal Ministry of Labour advocating that the condition not be judged by a single specialist based on symptoms, but by physicians from various disciplines and patients whose voices now had to be heard, ‘so that the categorization of abnormal and deficient had to be dropped’ (p.101). Witte highlights the achievements of American anaesthetist John Bonica, whose work marked a turn in chronic pain therapy, publishing The Management of Pain in 1953 and, in 1961, realizing his concept of a pain clinic with a multidisciplinary structure at the University of Washington in Seattle. Witte asks whether changes in pain therapy corresponded not only to advancements in anaesthetics but also to linguistic changes where the narratives of patients gained significance, and language shifted towards theories of cognition and aims of ‘managing’ rather than ‘curing ‘chronic pain.

Noemi Tousignant tackles the institutionalization of pain diagnosis and measurement in the USA, which she claims has tied pain to ‘more-than-sensory’ experience, ‘to selves and thus to emotional experience’ (p.112). The chapter traces the ‘quest for reliable pain-measuring technologies since the turn of the century’ (p.111) and is a fascinating exposé of attempts to quantify subjective experience, charting early attempts to exclude emotion in the search for objectivity to Beecher’s work in the 40s and 50s, which argued that pain sensation was indivisible from the reaction to it. Tousignant argues convincingly that Beecher’s work was ‘an important episode in the historical process of authorizing emotion as a component of anything worth calling ‘pain’’ (p.124).

Sheena Culley’s chapter moves us from the history of pain measurements and the analgesic clinical trial to analgesia itself – here the history of aspirin. Drawing on ways in which aspirin was marketed historically for anything from a sedative to a stimulant for physical and/or emotional pain, and on the writings of key figures such as Jan McTavish, David Morris, and Michel Foucault, Culley explores how aspirin and its successors have shaped cultures of pain and how the social construction of the feminine that they presented influenced a gendered understanding of pain. Culley concludes that, with the introduction of depression as a recognized medical term and the surge of antidepressant drugs from the 1960s onwards, aspirin and other over the counter medicines stopped being marketed as cures for emotional pain, and thus the image of the neurotic or hysterical woman disappeared. However, she hypothesises that the image of the hysterical female has not disappeared entirely from our understanding of pain ‘whether she resides in the discourse of chronic fatigue syndrome or of anorexia, or in a particular framing of female depression’ (p.145), arguing that ‘it remains for scholars in the medical humanities to continue to analyse the contemporary entanglement of biological and cultural aspects of pain and disease’ (p.145).

Liz Gray explores the suffering of animals, asking how, in the context of pain being an emotion as well as a sensation, can we truly understand the experience of another, particularly when that other is an animal? Here we have no shared language and no shared language of facial expression. Viewing the publication of Darwin’s ‘The Expression of the Emotions in Man and Animals’ of 1872 as a watershed in the research of expression of emotion, and drawing on the work of the Scottish naturalist physician William Lauder Lindsay and his contribution to comparative psychology, Gray outlines how animals’ capacity to experience emotional pain was accepted in part because of an acknowledgement that they suffered physical pain. She claims (slightly alarmingly) that Lindsay’s interest in the animal mind stemmed from his experience as a physician at the James Murray Royal Lunatic Asylum. Physical restraint of the ‘insane’ had been shown to be damaging to emotional and mental health. Similarly, Lindsay concluded that the causing of physical pain to animals was (unsurprisingly) linked to the development of mental health problems. Gray concludes with Lindsay’s belief that ‘The asylum, as a house for the mentally damaged of society, ought to have been a site for compassion and humanitarian care, as with every laboratory and even every home’ (p.161).

Danny Rees focuses on the expression of pain in humans, taking his title down in the mouth from Gillray’s depiction of a patient being bled by his doctor, Breathing a Vein, (1804). The image captures the essence of this book as it reflects the facial expressions of witnesses as well as those of sufferers. Rees makes a distinction between the visual expression of pain and the language used to describe it, feeding into a larger discussion on the inexpressibility of subjective experience. However, his focus remains on the history of representations of facial expressions for pain, which he regards as visual dimensions of emotions and valid ‘representations of internal states‘ (p.165). Rees traces ways in which early anatomical and scientific experiments defined the face of pain, contributing to the concept of ‘universality’ (p.166), asking why the face has been the locus of ‘repeated, probing attention’ (p.166). Referencing Amanda Williams, Rees begins by articulating the functionalist position that expressing pain in a way others can read aids survival ‘the function of pain is to demand attention and prioritize escape, recovery and healing‘ (p.166). He gives an informed and detailed account of the historical inconsistencies of approaches to expression from the Ancient Greek Sculpture Laocoon, through Charles Le Brun, Charles Bell, and Charles Darwin to Dr Guillaume Benjamin Amand Duchenne (who experimented with trying to separate the movement of facial muscles expressing emotion from the experience of feeling emotion) to Italian physiologist Angelo Mosso. After a fascinating historical journey through sculpture, etchings and photography, Rees concludes that ‘a range of historical meanings can be derived from a common (set of) expression(s)’ (p.185).

Whitney Wood takes a detailed look at the relationship between fear and pain in childbirth narratives of Late Victorian Canada. She begins with the words of Lucy Ronalds Harris in the late 1860s whose memories of fear and anxiety from the birth of her first child marred subsequent experiences of pregnancy. Other examples, such as Lucy Maud Montgomery (author of Anne of Green Gables) who wrote of her ‘martyrdom of misery, partly physical, partly anxious’ (p.191), are woven into an overview of the changing medical and cultural perceptions of the female body during the nineteenth and early twentieth centuries, as well as a wider discourse on the collapse of divisions between emotional and physical pain. Wood draws on leading figures such as Bourke, Bending, Scarry and Morris to expose the power relations within the rhetoric surrounding emotion and pain to refute the idea that ‘pain can be logically divided into two separate types, physical, and emotional or mental’ (p.192). Wood argues that the dismantling of female networks, caused in part by increasing migration in the second half of the nineteenth century, contributed to a greater willingness among middle class women to accept physician-assisted and hospital-based births, feeding into a growing pathologisation of pregnancy and childbirth. She ends by concluding that women not only conformed and contributed to existing medical discourses but ‘were active participants in the process of medicalising childbirth’ (p.198).

Scarry runs like a seminal vein through this book, her claim that pain achieves its unshareability in part as a result of its resistance to language provoking attempts to prove its shareability. Daniel Grey’s chapter The Agony of Despair: Pain and the Cultural Script of Infanticides in England and Wales, 1860-1960 begins by arguing just that, that pain is not only ‘shareable’ but shareable via visual, textual and oral means, and ‘that it is assigned historically and culturally specific meanings by those who witness and experience it’ (p.204). He picks up the relationship between pain and fear, exploring how and why the closely ‘entwined experiences of pain, shame and fear, became – and remained – key elements of the construction of infanticide in England and Wales for at least a century‘ (p.205). Grey observes how both the Infanticide Act of 1922 and its amendment in 1938 allowed women who killed their babies to be convicted of manslaughter instead of murder if they were deemed to be suffering from a ‘mental disturbance’. Grey reveals that both lay and professional opinion of the time stressed that it ‘was the combination of physical pain and mental anguish that was primarily to blame for the crime’ (p.205). He examines the narratives of pain through his examination of infanticide cases, demonstrating that both lay and medical opinion expected to interpret ‘potential signs of physical pain and emotional distress on the part of the defendant when giving evidence’ (p.205). Grey argues that descriptions of both physical and emotional pain were central to attempts at understanding infanticide in the nineteenth and early twentieth centuries. He concludes with the acknowledgement of a potential risk in examining accounts of physical and emotional pain of eliding specificities while ignoring the broader shifts in culture and society in terms of gender relations, observing how these scripts of women’s bodily and emotional pain do not fit with the equally contested discourse surrounding ‘the killing of infants by their fathers’ (p.215).

Continuing with the theme of understanding another’s pain, Linda Raphael turns to fiction. Chiming with Moscoso’s assertion that we are as likely to sympathise with pain through a fictional representation as any real-life experience, Raphael argues that when we read fiction ‘we have access to characters’ inner lives in a way that gives form to feeling’ (p.220), something David Biro might also agree with. She hypothesises that fictional representations ‘involve us cognitively and emotively in human experience’ (p.220) picking two stories involving a parent and child to explore ways in which language and face to face encounters sometimes facilitate and sometimes hinder understanding another’s pain. Drawing on a range of philosophers, Raphael asks what happens ‘to the self in this focus on sympathizing with the other’ (p.222). It is a particularly apposite question in a book that places so much emphasis on witnessing pain and the encounter with the sufferer. She concludes that to regard pain as ‘a stimulus to heterogeneous emotional responses is one way to avoid misunderstanding the other, despite the considerable limits on our ability to fully imagine the emotional experience of another’ (p.239).

James Burnham Sedgwick continues the focus on the person witnessing pain, here considering those who have the unenviable task of observing, investigating, recording or judging the atrocities examined at the International Military Tribunals (IMTs) in Nuremberg and Tokyo, following World War II. Sedgwick’s research highlights ‘the powerful and unexpected ways in which pain (direct physical, indirect psychological or other forms) can manifest itself in personal and historical change’ (p.243), arguing that the process of observing pain can transform into pain itself. He asks ‘Is all pain equal? Can it be shared?’, which could be viewed as a preoccupation of this book. Once again drawing on Scarry (1985), who argued that ‘what is “remembered” in the body is well remembered’, Sedgwick suggests that fixing pain and its legacies in the body neglects the scars of the mind. He adds the unsettling insight that even when shared at a distance, ‘the trauma and pain of others can cause psychosomatic changes in the self’ (p.244). It is a beautifully written, reflective and scholarly contribution, pulling together many of the themes from earlier chapters while examining the authenticity of suffering. He observes that the drive to overcome traumatic memory through ‘speaking out’, through art and through writing, can provide cathartic release for sufferers, acknowledging that there is a consensus around ‘bearing witness’, which for him makes intuitive sense. However he warns that ‘simply by investigating and hearing the cathartic release of survivors, participants in court and related institutions become vulnerable to a new set of disruptive collateral emotions’ (p.245). His words echo those of David Biro when he advocates a more inclusive definition of pain and trauma, ‘pain felt in observing and confronting humanitarian crises engenders emotional, spiritual, moral, professional and even physical alternations that include but are by no means limited to psychological change. All of this counts – or should count – as pain, even trauma, in the right conditions’ (p.249).

Witnessing and documenting pain is further examined by the artist Johanna Willenfelt in the final chapter. Willenfelt explores the representability of physical pain in what she terms ‘inter-bodied relationships and encounters’ (p.260), asking ‘how the emotive transient and transformative space of contemporary art might contribute to new understandings of the notional experience of sharing pain.’ This chapter serves as a fitting finale to a fascinating book as it presents its own distinctive take on the enigma of sharing pain while resonating with many of the themes outlined in earlier chapters. Focusing on her project Documenting Bodies (2010), Willenfelt states that she will be primarily ‘thinking through and with’ her own artistic practice and the ‘interplay between the medical sphere and the artist’s studio’ (p.260). However, I would have preferred more focus on her practice and less dependence on theoretical discourse, although this may have been the context in which she found herself or the perceived expectations of her readers. A fascinating point she brings to the discussion is the notion that ‘sharing pain’ must be understood equally ‘as the relationship one maintains with oneself as well as the one we enter into with objects and things in the outside world’ (p.272). This has echoes of Irigaray’s argument that it is respect for the self as much as for the other that allows speakers to enter the communication process successfully (Irigaray 2008). There is a charged moment in the text where Willenfelt discovers narrations by patients, doctors, surgeons and post-mortem examiners in the medical and surgical archives of the General and Sahlgrenska Hospital in Gothenburg – ‘the imprints of other people’s hurting bodies’ (p.263). These resonate with her own experience of suffering from chronic pain, activated by and intersecting with these alien pain narratives. From the archive entries she selects twenty or so to interweave and print on material, which then appear to be draped over hospital beds. The work recontextualises the narratives, weaving them in and out, not only with each other but also with those of the viewer. Willenfelt concludes by accepting that while observing someone in pain can never equate with directly experiencing that pain oneself, to have one’s suffering acknowledged by any living creature as witness is nonetheless liberating.

Many might take issue with the book’s central thesis that pain is an emotion, but few, having read it, could argue with its premise that emotion and pain are intrinsically linked. I would recommend anyone interested in the intersect between pain and emotion to go out and buy, beg or borrow a copy. Pain and Emotion in Modern History is an impressively researched must-read, presenting pain as a multifaceted, evolving, social, historical, physiological and psychological event to which we do not have, and may never have the answer.



Irigaray, L. (2008) Sharing the World. London: Continuum

Leriche, R. (1939) The Surgery of Pain (trans Young A.) London: Balliere, Tindall and Cox, p.202

Scarry, E. (1985) The body in pain: The Making and Unmaking of the World. Oxford: Oxford University Press

Williams A. C. de C. Williams (2002) ‘Facial Expression of Pain: An Evolutionary Account’, Behavioral and Brain Sciences, 25: 439



The Reading Room: The 2015 Hippocrates Poetry and Medicine Prize

28 May, 15 | by cquigley


The Hippocrates Prize for Poetry and Medicine is an annual international prize for an unpublished poem on a medical subject. It was launched in 2009 and consists of awards in three categories:

  • An Open Category
  • An NHS Category
  • A Category for Young Poets (14-18 years).

The 2015 judges were poets Rebecca Goss and Simon Rae, author and poet Theodore Dalrymple, and psychiatrist Femi Oyebode. The awards were announced at the 6th International Symposium on Poetry and Medicine on May 22.

First Prize in the Open Category was awarded to teacher and writer Maya Catherine Popa from New York City for her poem A Technique for Operating on the Past, which was inspired by her neuroscientist great grandfather.

The NHS first prize went to former counsellor Kate Compston from Cornwall for a poem about revealing the diagnosis of dementia, Lovely Young Consultant Charms My Husband.

Parisa Thepmankorn from New Jersey received the 2015 Hippocrates Young Poet Prize for Intraocular Pressure.

Links to YouTube readings of these poems and all winners in each category can found here


Khalid Ali: Fil Review ‘Mediterranea’

26 May, 15 | by Ayesha Ahmad


Lambert Wilson, actor and musician, Master of Ceremonies of Cannes Film Festival 2014, said “The world is written in an incomprehensible language, but cinema translates it for us universally. Without its guiding light, each person would remain in isolated darkness”. Exactly a year later in May 2015, an Italian film “Mediterranea” directed by Jonas Carpignano, sheds a light into the trials and tribulations of illegal African immigrants in Europe.


Sarah West: Film Review ‘Alive Inside’

26 May, 15 | by Ayesha Ahmad

It is because we live in a society where we tend to commit vulnerable members such as people with dementia to care institutions that we need documentaries like “Alive inside”. This very moving film, winner of the “Audience Award” at the Sundance Film Festival, 2014, follows a New York based social worker Dan Cohen as he volunteers in a nursing home, takes music to the isolated residents suffering from dementia, and in the process brings them alive before our very eyes. Sharing music with nursing home residents is a relatively easy task with the undeniable power of music to stir emotions and lift mood. The novel and creative use of iPods and MP3 players with personalised playlists proves to be an effective therapy for people with dementia who have lost their identity and connection with their loved ones.


The Reading Room: The Birkbeck Medical Humanities Reading Group

19 May, 15 | by cquigley


The Birkbeck Medical Humanities reading group aims to create a space in which academics, clinicians and students can come together to explore key readings, ideas and materials in the field of medical humanities. Our endeavour is to find ways of talking across the different disciplines of the humanities and medicine, and we welcome participation from colleagues interested and engaged in these areas.

Our next meeting will be on Wednesday, 27 May 2015, where we will continue to explore the theme of narrativity in the medical humanities, with a special focus on verbalising illness.

We will meet in the Keynes Library, 43 Gordon Square, between 3.30-5pm. 

Set texts:

  • Lucy Bending, ‘Approximation, Suggestion, and Analogy: Translating Pain into Language’, The Yearbook of English Studies, 36:1, Translation  (2006), 131-137
    Stable URL:
  • Joanna Bourke, ‘Metaphor’, in The Story of Pain: From Pain to Painkillers (Oxford: Oxford University Press, 2014)
  • Extracts from Alphonse Daudet, In the Land of Pain, trans. By Juilan Barnes (New York, 2002)
  • Extracts from Eula Bliss, On Immunity: An Inoculation (2014)

For further details, and copies of the set texts, please contact Heather Tilley,

Colleagues may also be interested in listening to this Radio 4 programme on the Language of Pain, aired on 2 May, on the BBC iPlayer ( (blurb below).

Virginia Woolf claimed that English has no words to express what it feels like to be in pain. Professor Joanna Bourke from the Birkbeck Pain Project sets out to challenge this notion, exploring archives from the last two centuries to illustrate the rich metaphorical language people have used to express pain, and demonstrate why doctors need to pay attention to what their patients say. This one-hour programme includes contributions from social, cultural and music historians Dr Louise Hide, Dr Lucy Bending, Dr Simon Heighes, Professor Javier Moscoso and Dr Ana Carden-Coyne, as well as pain clinicians Professor Rita Charon and Dr Joanna Zakrzewska, and artist Dr Deborah Padfield. It has been produced by Isabel Sutton for Just Radio.

Next Reading Group

Our last meeting of the term will be held on Wednesday 24 June, 3.30-5.00 (again in the Keynes library), and will focus on graphic medicine, with selections from Ian Williams, Daryl Cunningham, and some short animated videos.

More information on the group is available on our webpage, along with details of past reading.

Jo Winning (Director), Heather Tilley and Suzannah Biernoff.


The Reading Room: Upcoming workshop on ageing

12 May, 15 | by cquigley


Medical Humanities and Ageing, 29/06/2015


An initiative of the CHCI Medical Humanities Network Program, funded by the Andrew W. Mellon Foundation through the Consortium of Humanities Centers and Institutes (CHCI)

Old Committee Room, King’s Building, King’s College London, Strand Campus, Strand, London WC2R 2LSDate: Monday 29th June 2015

The Centre for the Humanities and Health, King’s College London, would like to invite you to our second workshop on medical humanities and ageing. We are one of the six CHCI member centres and institutes working on a project to further the development of medical humanities as a subject of study: each partnering centre conducts specific research on ageing, undergirded by collaborative reflection on issues of evidence, value, and evaluation.


10:00 – 10.30: Welcome

10:30 – 11:30: Panel: Reflections on Old Age

Dr Claire Hilton, Sauerkraut and African Violets: the Art of Old Age Psychiatry

Dr Elizabeth Barry, ‘Narrower and Narrower would her Bed Be’: Woolf, Beauvoir and the Change of Life

11:30 – 12:00: Coffee break

12:00 – 13:00: Panel: Stories from the End of Life

Dr Columba Quigley, How We Die: Palliative Care and an Ageing Society

Dr Maria Vaccarella, Narrating Decay

13:00 – 13:30: Concluding remarks

Seating is limited, so if you would like to attend, please contact Dr Maria Vaccarella ( by Monday 15th June 2015


The Reading Room: A review of ‘Health Humanities’

5 May, 15 | by cquigley


Health Humanities Paul Crawford, Brian Brown, Charley Baker, Victoria Tischler and Brian Abrams (London: Palgrave, 2015)

Reviewed by Dr Maria Vaccarella, Postdoctoral Research Fellow in Medical Humanities, Centre for the Humanities and Health, King’s College London


In her foundational study Manifestoes: Provocations of the Modern (1999), Janet Lyon explains that “the manifesto both generates and marks a break in history: it is both a trace and a tool of change” (16). In drafting this manifesto for the health humanities, Paul Crawford, Brian Brown, Charley Baker, Victoria Tischler and Brian Adams provide exactly this combination for change: Health Humanities (2015) traces the long-standing interplay of arts, humanities and healthcare, as well as advocating a reconceptualization of this very interaction. Scholars and practitioners in the field will be familiar with Crawford’s argument for an expansion of the medical humanities to include non-medical carers involved in the provision of health and wellbeing. What emerges more clearly from this book is a stance against “medicalised humanities”: as paradoxical as it sounds, humanists can end up privileging medical understandings of health and wellbeing issues, especially when constantly pressurized to justify their own research topics and methods, according to well-established research patterns, originated in the biomedical sciences.

This reflection on what counts as reliable research and interventions in humanities-based healthcare activities (chapter 7) is by far the most valuable contribution of this book to existing scholarship. The authors move from a careful examination of the shortcomings of evidence based medicine – unfortunately sometimes still showcased as the golden standard of health-related research – to an exploration of practice-based evidence, a helpful framework for bringing into play the positive results of recent challenges to traditional research, e.g. action research, patient advocacy, etc. This bottom-up shift in perspective will be most helpful in redressing the benefits of humanistic approaches to health-related issues, as well as dismantling the power imbalance between researchers and participants. The notion of evidence is not naively dismissed as inapplicable in the humanities; rather, it is presented as a much more nuanced concept than what is usually encountered in the biomedical sciences. As a consequence, if we want to collate results of humanities-based healthcare activities with a view of improving healthcare provision and policy, then we should reflect on an adequate methodology, given the limitations of systematic reviews and meta-analyses in this area. Crawford and colleagues suggest metasynthesis as a better way of making sense of the diverse inputs that the arts and humanities are likely to engender. Engaging in metasyntheses could also facilitate the emergence of a new, more cogent role for humanities academics interested in health-related issues, whom the authors describe as often wary of pushing their ideas into practice. A further advantage of a stronger engagement with creative practice is a resulting sense of mutual (one would be tempted to add, non-medicalised) recovery and community-building: to quote from the book, “there is a need to bring together diverse academic and community partners to share insights, approaches, methods and analytic tools in order to mobilise the concept and develop creative practice as mutual recovery to better connect communities for physical and mental health and well-being.” (142)

This invitation to fully embrace creativity is offered at the end of a survey of previous, more or less deliberate, preparatory work in a range of disciplines, from anthropology and the study of culture (chapter 2), through applied literature (chapter 3), narrative and applied linguistics (chapter 4), to performing and visual arts (chapters 5 and 6, respectively). The authors provide an introduction to the field under scrutiny in each chapter and then list a wide-ranging selection of its applications in health-related settings. There are nonetheless some inexplicably neglected areas, e.g. the role of performing arts in bringing about Patient Educators and Medical Readers’ Theatre (the benefits of which reach far beyond medical schools), or patients’ and carers’ graphic memoirs as a vivid example of the transformative, if not strictly therapeutic, potential of the visual arts. The internal organization of these chapters is also regrettably uneven. By way of an example, the chapter on anthropology ends with a most helpful set of questions, inspired by Arthur Kleinman’s exploratory models, to assist health humanities practitioners in taking stock of results from a cognate discipline to improve their own approach to patients. However, if readers expect a similarly pragmatic conclusion to all other chapters, they are bound to be disappointed. Of course, reducing innovative concepts to a list of questions could be regarded as a tedious exercise; but at least some of the disciplinary fields reviewed here (e.g. narrative medicine) would have easily yielded practical guidelines, a surely welcome gesture towards those informal carers that the authors make a point of engaging with to a greater extent. In this regard, the concise case studies boxes distributed throughout the text precisely perform this function of providing snapshots of interventions, informed by the theoretical debates surveyed in the chapters. They are so effective in showcasing the potential of the health humanities approach that one regrets that they have not been used more consistently throughout the volume.

The central tenet of Health Humanities that “the majority of healthcare and the generation of health and well-being is non-medical” (153) is indeed fascinating, especially because it could potentially evoke completely different scenarios in the context of global health. This looks like the ultimate challenge to the authors of this volume and all other practitioners of the health humanities: how can their promise of inclusiveness and internationalisation be predicated on a global scale, so that their envisioned maximisation of benefits to practitioners, informal carers and patients/carers responds to worldwide health-related needs? The manifesto has been produced; we now look forward to the change.

Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.


From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.


Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’


Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.


However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).


During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.


There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.


This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.


Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.


  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information:


Dr Hannah Zeilig

University of the Arts, London




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