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Book Review: To Be a Machine

15 Aug, 17 | by amcfarlane

To Be a Machine: Adventures Among Cyborgs, Utopians, Hackers, and the Futurists Solving the Modest Problem of Death by Mark O’Connell, London: Granta, 2017, 244 pages, £12.99.

Reviewed by Anna McFarlane, University of Glasgow

Mark O’Connell’s To Be a Machine documents the writer’s encounters with a series of self-proclaimed ‘transhumanists’; those who subscribe to the belief that life can be extended and broach the possibility that death itself might be eradicated in the coming years thanks to the exponential rise of technology. It is an intriguingly contradictory belief system, one that finds humanity lacking in its current form and wishes to transcend that state in a kind of eschatological rapture; but one that invests humans with the power to overcome the very conditions of their limitations through scientific progress and discovery. O’Connell’s interviewees are almost exclusively American, by choice if not by upbringing, and tend to make their homes around the technological hubs of Silicon Valley, a sunny, laid-back environment where this kind of techno-utopianism is something to be believed in.

O’Connell’s time with these characters brings him from cryogenic facilities, to those working with diabetes medications to find the means of medical life extension. Whereas the field of the medical humanities tends to look for ways to humanise the technical process of doctoring in an increasingly technical environment, these are people who are willing to give up their agency into the non-human hands of medical technology in exchange for the promise of eternal life. Many of these characters are brought to their belief in transhumanism through close encounters with the frailty of their bodies. For example, Natasha Vita-More, chair of an organization called Human Plus, realized her calling to transhumanism after an ectopic pregnancy meant the loss of her unborn child. O’Connell writes that, ‘when she talked now of her path to transhumanism, this was the time of her life she continually returned to, the moment when she realized, on a visceral level, that the human body was a feeble and treacherous mechanism, that we were each of us trapped, bleeding, marked for death’ (39). For those who implicitly put their trust in positivism, or at least in the neutrality of scientific progress, such moments of frail human identification with the flesh can turn disease, and even death, into an instrumental problem to be solved. One of O’Connell’s interviewees, a biomedical gerontologist named Aubrey de Grey, holds ‘that aging was a disease, and furthermore a curable one, and that it should be approached as such: that we should be prosecuting a great counteroffensive against our common enemy, mortality itself’ (180). Conceptions of age and death as enemies that must be fought with the use of all our scientific prowess extend the field of what can be considered a ‘medical’ issue, to encompass much of speculative science more broadly. In the thinking of transhumanism, medicine has less to do with humanism than with a superhuman wielding of the latest technology.

While some seek to solve the problem of death, others put technology to the opposite use. The (very human) desire to escape the fear of death and bodily vulnerability comes together under the rubric of transhumanism with capitalist and militaristic imperatives to create technologies that are by design protected from the threats that arise for human combatants in the field. O’Connell attends a robot expo, the Robotics Challenge organised by the US’s Defense Advanced Research Projects Agency (DARPA). O’Connell finds himself charmed by the anthropomorphic pratfalls of the robots as they attempt tasks that would be utterly straightforward to human protagonists – getting out of jeeps, climbing stairs, or walking over rubble – but notes the sinister subtext to such an event, which has at its heart the desire to create invulnerable beings that would further cement the USA’s global military dominance. This concern about the power behind new technologies extends to the medical field of life extension. O’Connell does ask about the fairness of a life extension technology that would inevitably find itself solely in the hands of the wealthy, maybe even just the super-rich, but is met with some assertions about the trickle-down effect that such technologies might have were they to become popular and affordable. The transhumanists seem to give little consideration to the possible population problems that might result from the unequal availability of life extension technologies and the societies that might be inadvertently engineered through such interventions. For that we have to look to science fiction, like 2015’s Elysium.

This is O’Connell’s first full-length book for a general readership, following his PhD and the resultant monograph on John Banville’s fiction, and his writing at times bears the signs of that academic bent as his observations are given depth through references to Theodor Adorno and Max Horkheimer, and some insightful thoughts on the importance of science fiction in shaping this particular brand of utopianism. Where the writing has not quite found its feet is perhaps in its juggling of interviewees – sometimes there are too many eccentric characters introduced in a short space of time and the reader feels like a stranger at a party, trying to memorise names and find a foothold in the conversation. However, when O’Connell finds a subject he can stick with for longer periods his writing is warm and humourous, and he is unafraid of bringing his personal experiences into the text, finding his attachment to an embodied and mammalian existence in his love for his infant son, and the fear of death he experiences when he finds himself in hospital for a biopsy. In the future, he may well develop into a writer with the popular humour of Jon Ronson coupled with a self-aware philosophical relationship with his material.

Book Review: Meanings of Pain

8 Aug, 17 | by amcfarlane

Meanings of Pain edited by Simon van Rysewyk. Springer International Publishing, 2016, 401 pages, £126.50.

Reviewed by Josie Billington (University of Liverpool), Andrew Jones, and James Ledson (The Royal Liverpool and Broadgreen University Hospitals NHS Trust)  

In The Illness Narratives (1988), a seminal text for the Medical Humanities, Arthur Kleinman tells the story of Howie, a police lieutenant in his fifties and decorated Korean war veteran – ‘six-foot seven inch, broad-shouldered’ – who has received every available orthodox and alternative treatment for his chronic lower back pain for twenty years. In constant fear that his back will ‘break’, Howie is hyper-vigilant, always waiting for the pain or avoiding making it worse, leading to a self-defeating cycle of fearful vulnerability, withdrawal, isolation and a frustrating anger and hopelessness which is transmitted over time to Howie’s family and physician. ‘Where is the illness?’, Kleinman asks. ‘In the back, all right. But what about its presence in Howie’s sense of self, in his relationship with his wife and mother, in the reactions of his children, in his work setting, in his doctor? The pain is the central idiom of a network of communication and negotiation. In a sense, the network is in pain’:

I am convinced that understanding the meanings of pain and tracing out the dynamics of somatization in the fullness of the life of pain patients will show that there is no such thing as the pain patient. A single ideal treatment for all but a few atypical cases can also be readily shown to be a dangerous myth.

This volume, as its title announces, takes up Kleinman’s concern with the meanings of pain. Emphatically pluralist, not ‘single’ in its outlook, the book incorporates an impressively wide range of disciplines, scientific orientations and research approaches, from neurobiology and psychiatry through psychology (health/cognitive/behavioural) and psychophysics, to philosophy and the humanities.

Divided into four broad sections, the first – perhaps inevitably, given the increasing use of imaging techniques, especially fMRI, to identify a ‘biomarker’ for pain – concerns pain and the brain. Contra the ‘widespread expectation that the field is close to replacing subjective reports of pain with objective measures of brain activity’, Stuart Derbyshire argues that this reduction of pain experience to a pain-brain relationship omits the essential contexts of pain: ‘Part of the trouble arises from treating pain as a private experience when the roots of pain lie in a socially negotiated subjectivity.’ Grant Gillet likewise disputes the standard view of pain ‘as something that goes on “inside” a person’ stressing, instead, the influence on pain experience of cultural stereotypes and practices that ‘shape who we are and how we understand and give an account of ourselves’. Phantom limb pain, for example, might be understood as the psyche’s response not to sensory-motor deprivation itself but to the evaluations and demands associated with that loss. ‘Such demands include the need to cohere with an image-ego – the object we apprehend as we monitor our body states and try to make sense of them – that is liveable with in a world of others.’  The sense made of a damaged or compromised body part, or a place where suffering has been focused, reflects a place in a lived trajectory and the discourses in which that life is immersed. Focusing specifically on ‘The Emotional Perception of Phantom Limb Pain’, Magali Fernández-Salazar, suggests that body-perception may contribute to the development of an emotional and noxious neuro-mental circuit which leads to and intensifies chronic pain. ‘If phantom pain is produced by the mental pain engendered by non-acceptance of the lack of a body part and of the amended body image, then the brain does not cause mental pain; rather, the mind provokes physical chronic pain able to transform neural networks.’

Derbyshire, Gillet and Fernández-Salazar are by no means opposed to neuroscientific exploration of pain which they recognise as currently ‘the most sophisticated investigatory technique’. On the contrary, these contributors welcome neuroscientific findings in the field – the evidence for brain plasticity, the instances of ‘brain-pain’ activity where no pain is suffered by the subject, the lack of a ‘pain centre in the brain’, the evidence for pain being ‘everywhere’ in the sense of activating multiple neuronal groups simultaneously – since these findings are supportive of their broad thesis: that pain, wherever it is felt, involves a complex individualised relation of physical sensation to emotional affect and engages and reflects the whole person as a being tied to experience, learning, environment and culture. As the volume editor puts it, ‘the contributors of the book are united in the view that a better understanding of pain neurobiology is necessary to meet the challenges of pain management’; but neuroscientific explanations are necessarily insufficient and incomplete for leaving out of account the degree to which pain is the outcome of an organism’s dynamic interactions with self and world.

The emphasis of the second and third sections of the book, dealing, respectively, with extant and ongoing qualitative research on pain, and with the ‘moral-philosophical’ meanings of pain, will likely be very familiar to this journal’s readership, given that the predominant philosophical influence is Husserl. ‘The subject of pain is not the body, conceived physiologically, but the person conceived phenomenologically.’   Phenomenological methods have gained currency in chronic pain research precisely in order to address the issue that, as Bustan Smadar puts it, the problem of obtaining a complete picture of the pain sufferer is not methodological merely, and cannot be resolved by a better scaling system for determining and communicating pain levels. The difficulty lies in ‘the evasive and invisible nature of pain’, its continuous intersection with external determinants, and the inexhaustible fluctuations of both pain intensity and its meanings for the sufferer.  Chronic pain is a model example of the necessity for emphasising lived experience in medical research and practice, and offers diverse test cases and demonstration of the application of a phenomenological orientation.  While specific methods are illustrated –  Interpretative Phenomenological Analysis, Experiential Phenomenology – the key value of this section is its reminder of how phenomenology (prioritising inductive thinking over reliance on a priori scientific criteria) can intimately honour first-person individualised suffering while disclosing common patterns or meanings across pain experiences.  Saulius Geniusas finds the ‘unmaking’ of the self’s relation to body and world, which has long been recognised as attending chronic pain (Elaine Scarry, 1985), to be inseparable from the reconstitution of those relations which pain disrupts. He identifies the twin processes or de-personalisation and re-personalisation as together forming the ‘essential temporal structures’ of the chronic pain experience. Agustín Serrano de Haro applies Husserl’s account of levels of attention (salient attentional focus, co-attention and inattention) to lived pain, arguing that ‘what is not painful within the current experience, what has another attentional status, is important for determining the scope of pain’. Patient pain assessment scales, limited to classifying the pain experience, omit this complexity and might be complemented, de Haro suggests, ‘on the basis that the intensity of pain always involves a relation with the rest of the field of experience’.

Much of this section and the remainder of the volume is valuably concerned with the implications of the emphasis on lived experience for clinical practice, and particularly on the training of professional carers. Narrative practice is especially important in relation to chronic pain, Ian Edwards argues, for capturing pain’s ‘non-normative realities’ unconstrained by dominant biomedical narratives. Yet, while this approach has become widely accepted in health, ‘the inclination and the skills needed to implement this approach remain much less evident’. Jessie Dezutter, Laura Dewitte and Siebrecht Vanhooren seek to redress the ‘limited attention given to the existential dimension’ in treating chronic pain, especially the loss of coherence consequent upon unemployment, marital problems and social isolation, by encouraging the translation of theoretical frameworks for meaning in life (those of Viktor Frankl and Aaron Antonovsky, for example) to the clinical field. Samantha Bunzli, Anne Smith, Rob Schütze and Peter O’Sullivan, in respect of the epidemic of lower back pain, and Drew Carter in relation to secondary pain affect, are concerned with how ‘making sense’ of one’s pain via informed understanding can amend fear avoidance and catastrophising behaviours and thus disrupt the vicious cycle (disuse, isolation, depression) which magnifies the acuteness of both primary and secondary pain.

The editorial introduction states that, despite the topical arrangement of the book (brain, qualitative research, clinical practice), chapter concerns are interwoven and mutually reinforcing. Certainly, there are rich resonances. Chantal Berna’s interest, quite late in the book, in how spontaneous mental images experienced by patients offer unique insights into qualities of pain experience (‘integrating somatosensory perception, emotion and meaning’) as well as therapeutic potential (via transformative ‘imagery rescripting’), intersects with the focus in early chapters on the psychological power of subjective body-image. This emphasis on pre- or extra-linguistic communication also anticipates Mike Stewart’s later emphasis on working with patient-generated (and often implicit) metaphors within clinical practice to facilitate the reconceptualization of pain. Similarly, there is synergy between John Quintner’s and Milton Cohen’s examination of the dynamics of the clinical encounter by reference to the models of inter-subjectivity proposed by Martin Buber’s ‘I-Thou’ relation and Winnicott’s ‘third space’, and Aurora Meugnot’s and Philip L. Jackson’s fascinating account of the use of virtual reality and intelligent avatars to model interpersonal synchrony and empathic response in exchanges around pain for trainee clinicians. Both in turn look ahead to the chapter by Melita J. Giummarra et al, which considers how vicarious pain experience, while enhancing compassion and motivation to protect and nurture, can produce distressing sensitivity to the suffering of others, ultimately disabling capacity for care by leading to burn-out.

The degree of overlap, however, produces quite a distinct sense of repetition cumulatively, and there seems little awareness on the part of contributors of the degree to which they are often restating positions and orientations already substantially represented elsewhere in the volume. The two chapters which close the book, by virtue of their positioning side by side, are exceptions to this rule: a defence (by Michael Barrot, Eric Salvat and Ipek Yalcin) of the clinical relevance of animal testing  in view of new experimental procedures for assessing physiological and emotional pain in animals is pitted against David B. Morris’s challenge to the assumption that animal pain is knowable by humans (however refined the models of experimentation) since animal pain, unmediated by social, personal and cultural meanings, is fundamentally other, non-human. More conscious and explicit dialogue of this kind across chapters might have enlivened the recurrence of ideas and emphases (‘coherence’, ‘meaning’, ‘lived experience’) and worked to shed some repetition (as well as to weed out some typos – proofreading leaves something to be desired across the volume). On the other hand, the commonality of interests among researchers and practitioners who have often begun from very different starting-points, reflects the degree to which there has been a sea-change over recent decades in thinking around chronic pain and its treatment, and the body of work offered by this volume bears admirable testimony to that shift. Yet, given that the book situates itself in relation not only to researcher and clinician demand for recognition of biopsychological approaches to pain, but also to the ‘parallel growth of patient-centred organisations and advocacy groups seeking to integrate patients into research and via alliances and partnerships’, it is notable that the patient’s voice is barely heard in the volume, save in the qualitative studies of Sherrill Snelgrove for example. It is somewhat surprising (albeit useful contrastively), given the volume’s overwhelming emphasis on the fundamental importance of human lived experience, that the volume ends with rodents not people.

It is unlikely that pain specialists will find in this volume perspectives that are entirely new to them. Likewise, those more generally interested in the vexed issue of how lived experience of illness relates to biological explanation of it, will encounter the well-known ‘hard’ problem, as Stuart Derbyshire puts it, of understanding how physicality relates to subjectivity. ‘Trying to read pain subjectivity through objective brain measures attributes impossible features to physics (perspective, memory) and implausible features to subjectivity (having a determined trajectory through time, looking neither backwards nor forwards).’ But this resolutely interdisciplinary book is right to claim the status of being the first report of research in the field that is dedicated to the ‘meanings’ of pain. The editorial introduction states the intended audience to be ‘research scientists, clinicians, patients with pain and caregivers’. It has a deal to offer medical humanities scholars also, as I have suggested, not simply because it seeks to address, via multidisciplinary and multidimensional approaches, the existential aspect of chronic illness that Kleinman was the first to recognise as absent from biological accounts; but because it is open to all that is technologically on offer – including neurobiology – to an understanding of highly personal meanings of chronic pain and how it shapes, or (as Kleinman says) constitutes, is, the individual life.

Those interested in this book and its review might also be interested in the forthcoming special issue of BMJ Medical Humanities, ‘Pain and its Paradoxes’. and this article by Billington, Jones, Ledson, et al, ‘A comparative study of cognitive behavioural therapy and shared reading for chronic pain’

Book Review: Wellbeing Machine

1 Aug, 17 | by amcfarlane

Wellbeing Machine: How Health Emerges from the Assemblages of Everyday Life by Kim McLeod, Durham, NC: Carolina Academic Press, 2017, 234 pages, $39.00.

Violeta Ruiz, Universitat Autònoma de Barcelona

Kim McLeod’s Wellbeing Machine will probably be a difficult book to follow for any reader who is not familiar with Deleuzian and posthumanist ideas. I study the history of emotions, focusing on the experience of neurasthenic patients at the end of the nineteenth century in Europe. My topic is often discussed in terms that McLeod openly challenges: in Western, capitalist countries, wellbeing is a property of the individual inner experience, for which the individual is somehow responsible.  Correlatively, depression (McLeod’s subject) is a distortion of this experience caused by a chemical imbalance that the individual should be able to counter by making the correct treatment and life choices. McLeod’s book “is impelled to rethink wellbeing in ways that do not blame individuals if they are not able to act, plan and make the correct choices” (5).

In order to do so, McLeod draws on the philosophy of Gilles Deleuze and, in different degrees, on a number of posthumanist anthropologies, such as the work of Karen Barad. In Section One, titled “’Orientating to Assembling’: To Reconceptualise Wellbeing”, McLeod proposes a new perspective: instead of looking at individuals as having agency that is based on beliefs and desires, as most social scientists do, McLeod focuses on assemblages: the connections formed between human and non-human entities, from which individual agency emerges. These connections presuppose collaborative immaterial labour, as developed by Antonio Negri and Michael Hardt, where bodily and cognitive energies combine to form the assemblage. Unfortunately, McLeod does not spend much time explaining these concepts, making them difficult to grasp for a non-expert reader. Chapter Three, entitled “Mobilising Assemblages throughout Empirical Research Processes”, discusses the methods McLeod applied in her research, but does not clarify how she uses the concepts in her work. Her work was based on a series of interviews with seven individuals suffering from depression who take medication for their illness. She prepares for the interaction with her interviewees with training in “yoga, meditation, dance and Fendelkreis” (29), together with vocal improvisation, to prepare her body for the “research encounters”. In these encounters, the participants had to draw a wellbeing chart of a chosen period of their lives. They also had to produce photographs that visually communicated what was happening to them at some point in the chart, together with a narrative of what the image represented. Drawing on these charts, photograph and texts, McLeod presents four different assemblages in Section Two, “The Wellbeing Machine”.

McLeod describes four kinds of assemblages: Becoming-Depressed; Becoming-Authentic; Becoming-Indeterminate; and Becoming-Destratified. The Becoming-Depressed Assemblage (Chapter Four) brings together the individual’s account of his/her wellbeing during the period of time that they choose to discuss, the treatments they receive (and how they become part of their daily life), and the communities they form. The Becoming-Authentic assemblage (Chapter Five) draws on the photographs they produce and their commentary about them, with the aim of focussing on those daily activities or objects that make her interviewees feel good. McLeod then interprets these testimonies in a heavily philosophical jargon. For example, the interviewee presented as Rayna comments on a picture of a bridge over a river, saying: “this scene always gives me a feeling of peace and ‘enchantment’” (76), and explains how the river reminds her of an aqueduct. McLeod comments: “As a line of flight, or a process of deterritorialisation, connections are being made between known or familiar entities in the realm of the abstract (as opposed to the virtual) order of things, a delimitative transformative process Deleuze calls relative deterritorialisation” (77).

The Becoming-Indeterminate Assemblage (Chapter Six) then deals with the transformative experiences of some of her research participants, who leave depression behind and try to change their lives with radically new experiences. This is potentially the most difficult assemblage to understand; in McLeod’s own terms: “the movement to this assemblage can be seen to reverse the ‘depressed’ and ‘authentic’ subject forms –the unified subject forms that help to prevent the risk of unsustainable affective transactions– that emerged from the Becoming-Depressed and the Becoming-Authentic Assemblages” (p.123). The Becoming-Destratified Assemblage (Chapter Seven) discusses the relapse to depression, which McLeod explains as a decomposition of previous assemblages. It is in this chapter that the reader explicitly finds the central claim of the book:

[B]odily practices are not just a matter of the individual executing the practice using volitional control and motivation. The capacity to undertake these practices is coextensive with the material and affective conditions of the assemblages they are associated with. (141)

In other words, if depression is understood as the breaking up of an assemblage, beyond anyone’s control, there is no room for blaming the individual. The self is part of a composition of forces for which there is no unified responsibility. In order to illustrate this argument, McLeod uses photographs produced by the same participant in two different assemblages (141), with different affective ranges in which depression is more or less difficult to overcome.

Identifying assemblages is, then, a highly interpretative task. The author provides several features that should help us grasp them: the way memory and attention operate in each of them; the range of emotions experienced; and the way the interviewer should interact with the interviewees. McLeod acknowledges that her bodily and emotional displays make her become part of each assemblage in turn, and she is affected by her research participants, their words and actions. This methodology was particularly interesting, as it framed the experience of wellbeing in a collective encounter, but the chapters did not offer much information about McLeod’s behaviour in each research encounter.

The book preaches indeed to the converted. In Chapter Eight, “The Architecture of the Wellbeing Machine”, McLeod explains how the four assemblages form the conceptual wellbeing machine – a series of co-extensive collective bodies. The Deleuzean reader will probably have no trouble in grasping the many political implications that the author infers from the concept. Reading Spinoza via Deleuze via Braidotti, McLeod takes the sustainability of a mode of being as her central normative target:  sad passions like depression threaten the stability of a “unified subject form” (172-4). The Marxian element deals with the extraction of surplus from the collaborative connective labour that is mobilized in an assemblage (174-5). Following this line of argument, the neoliberal self would just be a misinterpretation of the Becoming-Authentic Assemblage, where agency is attributed to the individual alone. Resisting ‘capital’ would occur in the Becoming-Indeterminate and Becoming-Destratified assemblages, since they do not sustain the capitalist institutions exploiting depression – such as the pharmaceutical industry, about which so little is said in this book (177).

As the conclusion shows, if the reader adopts the Deleuzean worldview articulated by McLeod, many central questions about wellbeing can be suitably reworded. As the author herself proposes, illbeing should not be appraised directly as a pathological issue, but instead we should ask ourselves “what might support a person to have an exploratory process to ascertain the kinds of collaborative connective labour that are required, given the specificity of their situation?” (181). Taking the assemblage processes into account, and giving importance to other non-human elements, the ill individual can have an account of wellbeing that does not involve blame and individual responsibility.

McLeod concludes by presenting one of the most pressing challenges she finds: “communicating [the] knowledge developed by drawing on the Deleuzean lexicon to non-theoretical audiences” (184). I agree with the author, except that I would also include those theoretical audiences who are not familiar with the Deleuzean tradition. Ultimately, the book speaks to those who use this tradition to frame their research, but does not offer significant reasons for others to adopt this line of interpretation.

I have tried my best to capture the central ideas of this book, although I am sure that any competent Deleuzean will find flaws in my summary. Although McLeod addresses an important issue that transcends the field of humanities and affects real individuals and healthcare policies, I have not been convinced that adopting the Deleuzean approach is the best way to address it.  Rather than proposing an alternative way to engage with issues of blame and responsibility that affect ill individuals, McLeod’s idea of a wellbeing machine seems principally to offer a new vocabulary with which to address them. As such, I believe its implications for further research remain somewhat limited for anyone who is not an expert in the terminology she uses. This book is probably best suited to an audience who already work in the field of depression studies using Deleuzean ideas.

Beautiful/ Dutiful Anhedonia

27 Jul, 17 | by amcfarlane

Film review: ‘My Father’, directed by Mohammed Adel, Egypt 2015

Reviewed by Professor Robert Abrams, Weill Cornell University, New York

‘My Father’ is a subtly crafted short film of unusual finesse that portrays the reality of caregiving for the elderly, particularly its emotional burdens and costs.  An older man, wheelchair-bound and with a below-knee amputation, propels himself slowly and apparently painfully; he is cared for dutifully but joylessly by his daughter in a flat that is far from clean.  The film appears to have been shot at daybreak, and much of the action takes place in semi-darkness, with an emphasis on sounds other than words — the early morning traffic of the city; the drip-drip of water; dogs barking outside; the firing of the water-heater as the caregiver-daughter attends to her morning ablutions; the crackle of eggs frying in a pan. Two worlds are awakening, large and small — the city beyond and a household inside. We watch the daughter as she proceeds, mostly in silence, through the rest of her routine, a round of obligations that includes preparing her father’s breakfast and changing the bandage of his stump.

The daughter’s facial expression is impassive throughout.  One senses that she is experiencing what has been increasingly recognized as caregiving depression.  This term refers not to the melancholic aspects of depression with obvious tearfulness and sadness, but rather to a kind of dutiful anhedonia, a sacrificial erosion of pleasure in living.  It seems that this caregiver’s only gratification may be the application of beauty cream to her face and arms after her morning shower; for this the camera initially displays a close-up, a montage of what could easily be taken for an Abstract Expressionist oil painting, with thick dabs of white against a complex multi-colored background, but then pulls back suddenly to reveal what is actually happening.

Only the daughter speaks in this film, and very sparingly at that. (The father, equally unanimated, is seen smoking a cigarette, which intentionally or not on the part of the film’s director, could be a reference to what might have contributed to his amputation in the first place).

In a most affecting sequence, the daughter, fully dressed and her morning tasks for the moment completed, sits reflectively.  It is difficult to read her emotions at this critical juncture in the film.  She is inscrutable—composed, stolid, stoic.  She is still young, and one naturally wonders what else she would be doing with her life if not caring for her elderly father.  What had their earlier relationship been like?

‘My Father’ is not necessarily an easy film to watch, but I have felt drawn to see it many times. On each occasion I have come away with greater admiration for Mr. Adel’s understated technique and thoughtful selection of detail in making his audience feel the harsh truth of care giving.  I also have come to recognize the love and willing sacrifice that run through the entire film, characteristics in fact shared by so many familial caregivers.  However it is gained, this kind of emotional understanding should, I believe, be almost a rite of passage for all physicians, but for geriatricians especially, who often encounter patients whose daily care is provided by a family member.  I was later moved to learn from Mr. Adel that this project was not only conceptual and artistic, but deeply personal for him.  The characters in ‘My Father’ are none other than his own sister and recently-deceased father.

You can read Mohammed Adel’s commentary on his film here.

Mohammed Adel on his short film, ‘My Father’

27 Jul, 17 | by amcfarlane

Egyptian director, Mohammed Adel, writes about his short film, ‘My Father’, which shows the difficulties of caring for his father in the weeks before his death. 

Writing about my short documentary film ‘My Father’ is not an easy task, just like when I started thinking of making the film itself. This is not because ‘writing’ in its own right is exhausting, but because rewinding the tape of memories around making the film brings back sad events. I write these notes after my father passed away on the 16th January 2017.

What motivates me to write are two reasons; first my desire to tell my story, a human compulsion we all have; some of us visit psychiatrists and pay them money to find someone to listen to our stories. The act of story-sharing becomes a calling, and not a luxury. The second reason for sharing is the hope that my colleague film makers might benefit from my personal account, a lesson I learnt from my friend and mentor Shawn Whitney.

The idea of making the film started after accompanying my father for the thirteenth time during a hospital admission. My father was diabetic. During this admission, my father’s leg had to be amputated due to chronic complications of diabetes; it was not salvageable this time. My father came back home in a wheel chair. A wheel-chair is not a sign of disability for an individual; it becomes a symbol of helplessness for the whole family.

I had a strong feeling that my father was about to die, and shared my worries with my sister Mona who was my strongest ally in making this film. Initially she refused to help, and strongly argued that I should not make it. I needed her on board over and above the fact that she is a professional photographer; she was the central character I wanted to show, the one who suffered the most along with my mother.

Not having a budget to make a film was not the only obstacle. My father’s consent to make it was another barrier. I thought, at least in the beginning, that I should not tell anyone in the family that I am making this film to avoid any unnecessary arguments, especially because my father had a tense relationship with all of us. I borrowed a Cannon 600D camera from my friend, Hisham Tawfeek, who gave it for free; a practical way of making a film with no budget is to rely on a ‘true friend’. I started filming inside our home with simple indoor lights, and my sister’s help, pretending that we were filming objects around the house; my father was totally oblivious to what was going on. I did not tell my mother either about what we were doing. She sensed that we were up to something suspicious. When she eventually found out, she insisted that we must tell my father, so he had a choice, either to accept or refuse. Ultimately she agreed to appear in the film, but only with her hijab.

Filming inside the house helped my father get used to having a camera around, but he did not know what we were exactly doing. He did not care; he thought that I was wasting my time making another incomprehensible film that will not make any money. It was usual for him not to show any praise throughout my career even after I studied journalism, and worked in a very prestigious journal, ‘Rose El Yousif’ in Egypt. I carried on making the film, paying little attention to my father’s criticism and our frequent arguments. You might say that I was selfish, but let me be frank with you, dear reader:  I was only trying to be focused and honest in ‘telling a story’ as ultimately the viewer will not care about the difficulties in making the film, he or she will only care about the film itself, so the viewer is selfish too.

There remains the ethical issue of filming someone without their consent or awareness. I quote here words from the French-Algerian director Naeima Bou-firkas: ‘There is a lot of controversy about the necessity of obtaining consent of characters who appear on film. It remains a debated subject that relates to the circumstances of making an individual film.’ My priority was to use film for catharsis; a vehicle to share the overwhelming mental and psychological burden that affected me then and continues to affect me now. Cinema and filmmaking is not only a medium that I love, but also a way of venting my feelings and thoughts. There are a lot of double standards in Egyptian and Arab households about what could and should be shared publicly.

I thought, justifiably, that the film title should have been ‘My Family’ as the whole family has the right to ‘speak up’ – even  more than my father who did not want to ‘speak’ – while being vigilant not to expose, suggest without incriminating, hint without pointing the finger of blame. It is a very personal film, and I did not want to cause my family any embarrassment, and I think I did that to some extent.

I shot the film in various stages of my father’s illness filming secretly from different angles and positions; my father never knew about the film till the day he died. The film was shown for the first time in August 2015 in Cimatheque Egypt, and was well received. The film premier was attended by my mother, my sister, and my brother. After the screening, my mother said: ‘’Your film is very dark. I did not know that we lived amongst all this’’. Thank you to my mother and my sister for making this film happen.

You can read a review of Mohammed Adel’s ‘My Father’ here.

Book Review: What Patients Say, What Doctors Hear

25 Jul, 17 | by amcfarlane

What Patients Say, What Doctors Hear by Danielle Ofri, Boston, Massachusetts: Beacon Press, 2017, 288 pages, £21.99.

Reviewed by Ben Bravery

 

 

It is the oldest tool in any doctor’s bag, and it is as important today as it was 200 years ago. It is not a device, gadget or pill. The side-effects are minimal, and it’s amongst the cheapest remedies around.

It is, of course, the art of conversation – that part of the doctor-patient relationship as essential to our craft as antibiotics and x-rays. Except, unlike these other components of medicine, the conversation has remained relatively unchanged since the very first healer sat down with the first patient and asked ‘So where does it hurt?’

Despite rapid advances in nearly every aspect of medical testing, diagnostics, imaging and treatment, the aural history provided by patients is still the mainstay of our process. At medical school we are taught early on that the patient’s medical history forms somewhere between 70 and 80 per cent of the diagnostic journey, after which examinations and investigations merely confirm what we’ve already heard and suspect is the underlying pathology.

In medical school, we then go on to spend a large chunk of our time neglecting the art of history-taking: instead we refine our examination skills, and knowledge of investigations and treatments. I suspect this is because, we, after all, already know how to have a conversation. Therefore, the majority of students believe that all we need to do to become competent doctors is memorise the right questions associated with particular presenting symptoms.

But according to Dr Danielle Ofri’s new work What Patients Say, What Doctors Hear, it just isn’t that straightforward.

I’m not all surprised by this – I came to medicine via a colorectal cancer diagnosis in my late 20s, an illness that stopped me in my tracks and sent me off on a different path. As my knowledge of medicine and doctoring grows, so to do my frustrations when I see parts of the system so in need of improvement.

In a refreshing re-focus on communication, Dr Ofri’s work will hopefully encourage doctors, both those with experience and those new to the profession, to reflect on how they speak to patients, just like they would reflect on new treatment guidelines and diagnostic tests.

Sadly, in the field of doctor-patient communication we have a lot of ground to make up. This method of medical inquiry has received far less attention than sexier forms of medical research. If the examples Ofri draws on, and my continued lived experience as a patient are anything to go by, large gains can be made quite easily.

So how low is the communication bar?

Low. Recently I had a colonoscopy to check for tumour recurrence. It wasn’t until I was in theatre and in the left lateral position with my sphincter exposed, breathing through an oxygen mask and watching the gooey deliciousness of Propofol enter my cannula that I realised I hadn’t met the doctor performing the procedure! Maybe, I thought, they will introduce themselves afterwards. I was mistaken; not even a quick ‘hello’.

Dr Ofri discusses the barriers to basic good-quality communication throughout her book: overflowing waiting rooms, fee-for-service, computer interfaces, paperwork and electronic medical record requirements. Despite this, she argues that we can’t afford, as a profession, to compromise our greatest tool – connecting with the sick person in front of us and engaging with them in a meaningful way.

Each chapter articulates the benefits of a strong connection: a richer medical history, a better understanding of what matters to patients, knowledge of factors that may limit their recovery, greater patient satisfaction, improved medication concordance, shorter consultation times. The list goes on.

Ofri illustrates these benefits using a comprehensive evidence base, drawing on studies into all types of doctor-patient communication from numerous branches of medicine.

For example, researchers looked at 335 patient encounters at a Swiss medical clinic where doctors were instructed to ask their opening question and then remain silent until the patient stopped. The average? A mere 92 seconds. Not the hours that Ofri’s colleagues feared would transpire if they stopped interrupting their patients.

And what about patients listening to doctors? One study found that fewer than half of patients discharged from hospital knew their diagnosis; in another study less than one in five hospital patients could name the doctor in charge of their care.

Given the wide-reaching and humanistic way Ofri writes about communication and her own journey to become a better communicator, I was initially surprised that the book lacked a nice summary for practitioners – something they could take away and memorise. On reflection, and despite our obsession with learning lists, I think Ofri the author rightly avoided this as it’s too reductionist and linear. After all, she spends a great deal of the book explaining how doctor-patient communication is actually a two-way narrative, a kind of shared journey via the spoken word – a conversation.

Key to What Patients Say, What Doctors Hear is that empathy underpins the way we communicate (or in my colonoscopy case, deciding when to communicate). Reading the book has led me to believe we need a kind of communications time-out in medicine, akin to our surgical time-outs. At the top of the protocol would be ‘Introduce yourself to the patient’; and further down, ‘How might the patient be feeling today?’

This may seem draconian. But we clearly need to make our communication with patients front-and-centre. More human. And to finally give it weight as a tool – as important as blood pressure monitoring or MRI to diagnosis – that no doctor can afford to ignore.

The Doctor as a Humanist – a Solution to Uncertainty?

18 Jul, 17 | by amcfarlane

Jonathan McFarland, (Sechenov University), Annalisa Manca (Queen’s University, Belfast), and Irina Markovina (Sechenov University) describe their upcoming symposium, “Can the Humanities Transform 21st Century Medicine?”

In October 2017, the first “The Doctor as a Humanist” symposium will be held in Palma de Mallorca, Spain, with the following subtitle “Can the Humanities Transform 21st Century Medicine?” The symposium will bring together experts in medical humanities from around the world (UK, Spain, Russia, India, USA, Canada) along with medical students from the different participating universities (Sechenov, Moscow, Pompeu Fabra, Barcelona, Queens Belfast and the Balearic Islands University), and will be divided into sections; including Literature and Medicine, Art and Medicine, and Music and Medicine. All aim to answer the above question. One of the main goals of the symposium, which is embedded in a wider pedagogic project, is to start up an International Association, which, among other things, wishes to develop ways to introduce the humanities into the medical curriculum and practice. Siddhartha Mukherjee in a recent book comments,

I had never expected medicine to be such a lawless, uncertain world…the profusion of facts obscured a deeper and more significant problem: the reconciliation between knowledge (certain, fixed, perfect, concrete) and clinical wisdom (uncertain, fluid, imperfect, abstract). (1)

There is no doubt that life in general, and medical practice, in particular, is becoming ever more technologically oriented; we just need to watch our children plugged into their mobile phones and computer screens to see this. In the last 100 years, medicine has progressed so much, and the medical tools available to doctors has multiplied to such an extent, that previously untreatable diseases can now be cured.

This is the miracle of the twentieth century, and this is due to medical research. And yet, it has changed the practice significantly, and has even, perhaps, altered the meaning of healthcare. As Danielle Ofri said in a recent article, “thanks to a century of staggering medical progress, we now live past 80, but evolution hasn’t caught up; the cartilage in our joints still wears down in our 40s, and we are more obese and more sedentary than we used to be, which doesn’t help.” (2)

This is a long way from Osler’s three Ps: placebo, palliation and plumbing; the days when the observation of patients and noting down of their symptoms, the famous “bedside manner”, was the only solution because there was little else to be done. Osler was the father of diagnostic technique – “listen to your patient, he is telling you the diagnosis” – and, in those days, doctors were steeped in classical education. Nowadays, machinery has all but replaced the doctor’s eye and ear, and although this has brought about a democratization of medical practice, it has also transformed the doctor-patient relationship to such an extent that perhaps there is more distance between them since before the days of Rene Laennec. Modern doctors are turning away from the stethoscope and physical examination to the MRI and CT scan. Clinical judgment has been superseded by complementary tests, so, what is the answer?
On the one hand, we strongly believe that medical progress such as genomics, stem cell and tissue engineering, 3D printing and so forth, will revolutionize medical practice even further, and no one will deny that the benefits to mankind will be extraordinary. But on the other hand, what will the cost of these benefits be? More loneliness, and mental health problems in the general population, and more demotivated and burned out health professionals?

Is there a solution?

The October symposium, and the subsequent The Doctor as a Humanist Association, will attempt to use and learn from the experiences of doctors from different countries and cultures to build strategies to cope with the uncertainty inherent at the core of medical practice. Ironically, our remedy is to look to the past, when the humanities played a critical part in medical care. Indeed, this separation of the humanities from medical education is only recent, and prompts a series of questions. When did it take place? What has it meant for medical education and care? Can we bring back what has been lost? Do the humanities still have a key role in the medical care framework of the 21st century and beyond? The Doctor as a Humanist will try to answer these questions, as we truly believe they could be the key to unlocking the medical education and practice of the future.

Time present and time past
Are both perhaps present in time future
And time future contained in time past.(3)

References

1.  The Laws of Medicine: Field Notes from an Uncertain Science, Siddartha Mukherjee, Simon & Schuster/TED, 2015.
2. The Conversation Placebo, Danielle Ofri, The New York Times, 19 January 2017.
3. Four Quartets, T.S.Eliot, Harcourt, 1943.

Corresponding author: Jonathan McFarland (Sechenov University): mcfarland.jonathan@gmail.com

When Truth Speaks: Discourses of the Voice in Medicine

17 Jul, 17 | by amcfarlane

Dr Ayesha Ahmad, Global Health Humanities Correspondent, has been travelling in Afghanistan and Nepal and meeting women who’s lived experience is a conflict of chronic gender-based violence. Her initiatives are to integrate storytelling into mental health trauma interventions globally in contexts of war, oppression of women’s speech, violence towards women and girls, and writing against the backdrop of rich story-telling traditions.

Often I reflect on the stories I have listened to. At these times, I collect the way I have experienced their stories; the gazes and the silences and the image of when someone looks me in the eye and speaks. These stories come from doctors, students, patients, and from people unknown to the world because of the suffering they carry. I bring these stories together in my mind. I wonder whether practicing medicine has limits; can medicine find all of humanity? I believe medicine can, and does. I always remember some feedback I received from a lecture I once gave on conflict and health; I was told I know how to tell a story. To this day, this remains a source of strength for me. This is the humanity of medicine, of the treatment of suffering whether from the clinic or the academy; the telling of and listening of stories.

I am one of countless individuals indebted to Professor Rita Charon who is working in some context of the clinic and feels at home with the concept of narrative as foundational for medical practice. My work focuses on the written narratives in mental health trauma related to gender based violence. Alongside, Charon’s pioneering research, during my PhD I saturated myself with Jacques Derrida’s notions of discourse and the signs and symbols of how we interpret and understand our experiences. To write the phrase ‘medical practice’ begs reflection; what does practicing medicine mean? Medicine places the unknown existentialisms of our human condition into a sphere of turning narratives; we find structures among these, creating universalities of being human wherever the world tilts; our births, living, suffering, dying, and death, and then the spirit, where medical practice halts and understands that spirits cannot be treated, and are only for healing. Spirits, then, are an equaliser; whilst medical practice is the handling of humanity, a spirit solidifies the existence of the story.

In my field of global health, I bear witness to the narratives of healing from the depths of all languages; the narratives of different authenticities that speak from a truth that I have perceived in the eyes of people who I am recollecting now, one by one. As Charon describes, I am honouring their stories. Their truths are speaking.

In all the stories that I have received, though, I have held disclosures yet at the same time I face distances of darkness, spaces of unfilled voices and visibilities that remain silent and unseen. This is the tragedy I am writing about. The truths that are unspoken, yet lived.

I question my role as an academic researching, lecturing, discussing ethics consultations, writing, presenting in international conferences, collaborating with non-governmental organizations, providing medical education for students and trainee doctors, and trying to find ways to free the tightly-rolled narratives of the marginalized. Medical practice provides a mode of examination for the way our stories make us ill; the somatised symptoms of a suffering that our societies suppress; because we fear bearing witness to suffering, and the telling of a story requires justice. But when the perpetrators are our protectors then what is the role of medicine? Can medicine practice justice?

I have heard the truths of doctors who witness other doctors committing abuse and violence towards patients in countries that are born from structural poverty, colonialization and chronic humanitarian crises; I have held in my hands the transcripts of traumas from the land as well as the body from asylum seekers and refugees; I have seen the pains that languages cannot speak. In all of these the truth has spoken; these are the discourses of medicine; the signs and symbols of our suffering of humanity and the patients for the practice of medicine.

Some of our greatest contemporary writers, Elif Shafak and Adiche, warn against the reduction of our identity into a single narrative. Truth also follows a similar path; symptoms of suffering are not reducible to a single narrative, not of the body, not of the mind, not of the spirit. The narratives of a narrative-based medicine are embodied, encompassing, and excite the diversity of different discourses.

We do not need to speak every language or interpret every sign or symbol to practice medicine; rather, to honour humanity, we need to have space for the truth to speak—that is, for our voice and our visibility to be present, that is the practice of medicine.

“Congenital Glaucoma”: Commentary

12 Jul, 17 | by amcfarlane

Dr Richard Ratzan gives us a commentary on his poem “Congenital Glaucoma, published in BMJ Medical Humanities, and explains why he decided to write about this case using the sonnet form.

This little girl – she was probably about 13 or 14; I don’t remember since it was about 10 years ago – was from Mexico, almost certainly illegally but I do not remember that for certain either. She was with 2 or 3 boys her same age. What struck me about the case – and prompted me to write about it – were the following: first, how animatedly happy they all were. In retrospect, given how devastated I was that she was not only blind but preventably so, I was impressed that this misfortune was not precluding their youthful joy. (Whether she was so joyful when the ophthalmologist gave her the official bad news in his office – as he did since I called him about her two days later – I do not know.) Secondly, as someone who makes it a practice to look in at least 3 to 4 sets of fundi a shift – I find it useful and I do not want to lose this skill, as I would were I to use it, as my residents do, only when I “need to”, e.g., for severe headaches or visual problems – I was astounded, as I have not been that many times in my professional life, by the sight of her fundi: each cup was a bottomless pit of featureless whiteness, with vessels falling off into them from the edge of her retina as though falling off the edge of the universe. (I was also acutely aware then, as I write “sight” now in the preceding sentence, of the irony that it was only my good vision that could diagnose her lack of it.) Thirdly, I was struck by how blasé about it my resident, a good PGY3, was. Yet again I marveled at young physicians’ lack of ability to marvel. Is it their lack of experience, the paucity of fundoscopic examinations (not that they do that many these days or ever will accrue a database with which to compare) against which to measure medical horror when they see it? Or is it simply a different attitude they bring to work, an unwillingness or youthful inability to see the wonder of clinical medicine when it rears up in front of you? It is not callousness, at least in this young resident’s case. And fourthly and lastly, I grieved at the tragedy of her being born in Mexico without the resources we in the U.S. take for granted. If her parents here had noticed her trouble seeing as a younger girl – as I am sure hers in Mexico had – she would have gone to an ophthalmologist and – case closed – gotten preventive therapy. No blindness. Which is why, as someone who knew little girls like this when I used to spend a lot of time in Mexico, I referred to it as a sacrifice – a sacrifice of Mexico’s poverty and inadequate health care. A sacrifice I tried to make more historical and poetic with references to pre-Columbian mythology.

Why a poem, and why and how a sonnet? I have been interested in telling medical stories, vignettes, case histories, in verse for years since there is an economy to verse and a freedom “to tell all the truth, but tell it slant” [ref 1], a quotation (the title of the poem, actually) from Emily Dickinson that my late physician-poet friend, John Stone – and a far greater poet than I – liked to invoke whenever he was asked the same question – why poetry? But why a sonnet and not a villanelle [ref 2] or a sestina [ref 3]? It is the liberating mode of poetry and the simultaneous discipline, the challenge, of packing everything into a tightly defined package of a sonnet’s 14 lines. First I must squeeze the facts of the case into the octet, the first 8 lines, and then the exposition of the ideas, which exposition will only work if I have been successful in the first 8 lines, into the terminal sestet, the final 6 lines. Although Shakespeare usually uses the last two lines as the “volta” (Italian for “turn”, the axis point at which the poet gets to the crux of the poem) of the sonnet, I almost always follow the Petrarchan model using a sestet to “wrap up” the case. What I find most challenging is the tension between being too economical – writing solipsistically cryptic references only I understand – and prosaically literal. The former borders on the opaque (Wallace Stevens can pull it off; I can not). The latter is the case history we have all learned to use when dealing with other medical listeners. In between is poetry. As my second son said with amazement some years ago, upon hearing that I had attended a standing-room-only poetry reading by Mary Oliver at Smith College, wondering what the big deal was about poetry, “Poetry is incomplete prose. There are words missing.” (I didn’t have the heart to tell him that his definition of poetry was a veritable haiku. I did not want to ruin his day.)

References

1. Dickinson, Emily. “Tell all the truth but tell it slant”. Poetry Foundation. Accessed May 5, 2017.
2. Williams CK. “Villanelle of the Suicide’s Mother”. Reviewed by Ratzan RM. Accessed May 5, 2017.
3. Hadas, PW. “To Make a Dragon Move: From the Diary of an Anorexic. Reviewed by Donley C. Accessed May 5, 2017.

Book Review: Understanding Health Inequalities and Justice

11 Jul, 17 | by amcfarlane

Understanding Health Inequalities and Justice: New Conversations Across the Disciplines by M Buchbinder, M Rivkin-Fish and RL Walker (eds). Chapel Hill, NC: University of North Carolina Press, 2016, 320 pages, £37.50.

Reviewed by Professor John Harrington, Cardiff University

Inequality has returned to the political agenda in Europe and North America in the aftermath of the financial collapse of 2008 and the austerity programmes which followed it. The paradoxical success in failure of Bernie Sanders and Jeremy Corbyn in US and British elections respectively marks this shift. The long decades of neo-liberal hegemony, which privileged supply-side ethics and economics over the redistribution of resources, have come to an end. Instructed by scholars such as Thomas Piketty and challenged by the Occupy movement, parties of the right and the so-called centre left now accept that a direct concern with remedying inequality is essential to sustaining the legitimacy of the capitalist order. Contemporary health policy and politics are no exception. Persistent inequality in access to care and in health outcomes, exacerbated it is claimed by austerity regimes, track patterns of social exclusion and historic disadvantage associated with gender, race, geographic location and citizenship-status. While policymaking and research on health inequalities and injustice is of longstanding, they have gained urgency in the present conjuncture.

This collection is timely therefore, containing engaging and fresh interventions on the connections between health inequality and justice from scholars working in ethics, anthropology, history of science and health policy studies. Its aim is not only to provoke reflection on how we define and address health inequalities and inequities, but also to contribute at the level of methodology, highlighting the analytical strengths, but also the blindspots of the different disciplines in their engagement with these questions. But it does much more than simply line up perspectives one alongside the other. Lively interdisciplinary dialogues are ‘staged’ within individual chapters themselves. Paul Brodwin’s essay on mental health, for example, showcases the possibility for a productive interaction between the first-person testimony of survivors and abstract work on the ethics of recognition. In a respectful reading he shows how each approach can complement the other. Personal accounts indicate the dynamic nature of the quest for respect and intersubjective recognition by former patients, while theory can clarify the values which are often simply assumed by personal accounts. His hopeful conjugation of two different genres stands in contrast to the hermeneutics of suspicion which suffuses the encounter between disciplines evident in other chapters. Thus, Eva Feder Kittay uses ethnographic accounts to challenge the assumption in law and policy that all patients exercise their autonomy to the same extent and in the same way. Her use of personal narrative here allows the reader to go deep and wide: identifying the influence of historic discrimination and location within networks of support on the ability of different individuals to behave ‘autonomously’ in accessing and benefitting from health care.

It is a notable strength of the book that the interdisciplinary conversation signalled in its subtitle is also carried on across chapters, as well as within them. Thus, Kittay’s review is augmented by the theoretical platform developed by Janet Shim and colleagues in their own critique of the ‘Patient-Centred Care’ model which has underpinned recent US health reforms. Building on the work of Pierre Bourdieu, they argue that clinical encounters are shaped by the specific ‘cultural health capital’ available to each party. This repertoire of communication skills, educational attainment, deportment and etiquette is itself unequally distributed among patients, leading to correspondingly varied attitudes and interventions on the part of their doctors.

The salience of such pre-conscious attributes (or ‘habitus’) is taken up in relation to the oral health of Mexican migrants to the US by Sarah Horton and Judith C. Barker. Drawing on extensive ethnographic work they show the enduring influence of limited access to dental work on the health and broader social prospects of the children of undocumented workers. Detailed stories of women prevented from breastfeeding by their employment conditions and the efforts made by children and young adults to hide or remedy defects make vivid the insight which several contributors borrow from Nancy Krieger, writing elsewhere, that inequality is embodied. The critique of formal autonomy is extended by Janet De Bruin and colleagues in their chapter on conceptions of risk in pregnancy, which shows how legal measures and media discourses about maternal responsibility, claimed to be based on neutral empirical studies, are in fact deeply shaped by culture and prejudice. This provides empirical substance for a critical ethical review of policy with reference to the six essential heads of well-being set out by Madison Powers and Ruth Faden in their theory of social justice and health.

The chapters discussed are animated by faith in the capacity of interdisciplinary approaches to produce new perspectives on the nature and ethical significance of health inequalities, even if their conclusions are often pessimistic in substance. Nicholas King is a notable exception to this, warning of the perils of ‘cross-disciplinary’ cherry picking which lead to easy but not wholly justifiable policy recommendations. His immediate target is the widely held view that reducing social inequalities will lead to improvements in health. That position, he argues, confuses the undeniable association of poverty and ill health, with the existence of a causal relationship between them, which has not by and large been proven. He suspects philosophers and social scientists of wilfully or carelessly paying insufficient attention to the limits of epidemiological findings and assuming their objective and value-free character in order to strengthen their own normative position. This argumentative sleight of hand will be found out, he suspects. Better to be honest and stake a direct claim for combatting social injustice, regardless of its (unproven) effect on health. This is a wise counsel, though King might have augmented it by adopting the contextualizing methods on display elsewhere in the book. A more historically-informed reading would suggest that the desire to ground interventions in ostensibly neutral studies concerning health effects is consonant with the dominance of evidence-based policymaking, and the more insidious compulsion to defer open debates on distribution and equality both typical of neo-liberalism.

The problem of causation also troubles Paula Braveman in her opening contribution to the book. She accepts that the term ‘health inequities’ gains its specific rhetorical force from the attendant notion that such disparities can be traced to unfair social structures. Like King, she accepts that this causal flow is hard to prove. Like him she wishes to avoid pinning the case for active intervention to meet health needs to this element, arguing instead that bare health inequalities are themselves of ethical significance in so far as they compound pre-existing unfairness. State responsibility to act in such cases can be based on the normative repertoire of international human rights law, and in particular its strong injunction against discrimination and its focus on remediating the position of disadvantaged groups. This is indeed a plausible reading of human rights law, though one wonders at the extent of its likely political traction in the US, which has not of course ratified the International Covenant on Economic, Social and Cultural Rights, central in this context.

State obligations are a key focus of Jennifer Prah Ruger’s chapter, which is the only one to engage directly with questions of global health justice. Based on a careful blending of governance studies and theories of justice she sees an important role for the nation state, which had previously been somewhat overlooked in the global health literature. The state is conceived of here as an indispensable lever for addressing health inequalities as between populations in different parts of the world. This is a wholly instrumental characterization. The state’s contribution is defined only in categorical and functional terms, circumscribed by universally binding standards of justice themselves based on the rights and responsibilities of individuals. No attention is paid to the historical specificity of different states, and particularly those in the global south which are the focus of most global health efforts in practice. As medical anthropologists and historians of science have shown, the work of independent states in health as in other social sectors was oriented by the aspiration for development and emancipation from the effects of colonialism widely shared among their citizens. Of course, in many cases this aspiration was bitterly disappointed. But states remain nonetheless the objects of desires and concerns which exceed the merely instrumental.

Ruger also demonstrates the power of the capabilities approach in orienting studies of health justice domestically and globally. Its emphasis on the protection and promotion of agency is a theme taken up implicitly and explicitly by many other contributors from different disciplines. Indeed, the detailed ethnographic studies and closely-read patient testimonies, as well as the critical engagement with popular discourses around pregnancy and migrant health rights, offer us wide ranging evidence of the ceaseless struggle to secure patient autonomy and health justice. Structural determinants, arising out of economic and legal constraints, as well as conscious bias and inherited disadvantage mean that health agency is almost always realized in ‘tight corners’. This crisply edited, well-constructed collection deserves our praise for directing our attention ‘up’ to the level of critical ethics, and ‘down’ to the messy world of practice and in forcing us to reflect on the often problematic, but sometimes enriching and productive relationship between the two.

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