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Book Reviews

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.

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.

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.

Book Review: No Apparent Distress

27 Jun, 17 | by amcfarlane

No Apparent Distress: A Doctor’s Coming-of-Age on the Front Lines of American Medicine by Rachel Pearson, New York: W.W. Norton, 2017, 272 pages, £21.99.

Reviewed by John Coulehan, Stony Brook University, NY

Was there a time before memoirs of medical training became a popular genre of nonfiction?  It’s difficult now to imagine a time before aspiring young physician-writers frequently turned their attention to the slings and arrows of outrageous—but also often sublime—medical education. Intern by Doctor X, one of the earliest first-hand accounts of  hospital training, appeared in 1965. Its lurid description of life in a teaching hospital forced the author to remain anonymous, but the book was eagerly consumed by the public, whose appetite for these stories has grown and multiplied over the ensuing decades. Soon additional memoirs began to appear, and a new genre, the medical bildungsroman, was born. Today Amazon and Barnes & Noble offer dozens of books featuring the personal stories of young physicians. Some of these, like Danielle Ofri’s Singular Intimacies or Atul Gawande’s Complications, are first rate literature; others are merely workmanlike. Some focus mostly on the writer’s internal struggle or character formation; others are explicit in their critique of depersonalization, overuse of technology, or injustice in American medical care.

The plots of medical bildungsromans are pretty standard: an idealistic student enters the maelstrom of medical school or residency training, overcomes obstacles, gains practical wisdom and survives, determined to become an altruistic and humane physician, despite external constraints, like deficiencies in the health care system. Some physician-writers are able to combine these generic ingredients into compelling and provocative stories. To do so requires freshness of insight, a talent for vivid storytelling, and a distinctive voice.

Rachel Pearson’s No Apparent Distress displays all of these qualities in good measure. Dr. Pearson graduated from the University of Texas at Galveston in a combined MD-PhD program, with her PhD in Medical Humanities . The book’s title is an ironic reflection on the traditional medical shorthand, “The patient is in no apparent distress,” or shorter still, the chart entry, “NAD.” As Dr. Pearson makes apparent, there is in fact a great deal of distress among students, physicians, patients, and in the American health care system as a whole.

Aside from the author herself, the book’s  most significant character is St. Vincent House, the site of a student-run free clinic for indigent and uninsured patients. Over 25% of Texans were uninsured in 2008. For those in Galveston, St. Vincent’s (with the motto, “All Are Welcome Here”) was virtually the only available safety net. Rachel began working in the clinic  from her first days in Galveston and continued throughout medical school, eventually serving as a student director. Thus, much of No Apparent Distress is devoted to her education at St. Vincent, which included in-depth learning about the social and cultural context of medicine, and the glaring inequities in American health care. The publisher’s flyer describes No Apparent Distress as “a searing indictment of America’s health care system.” I would not call the book “searing.” Yet, it’s compassionate and hopeful stories of struggling patients teach the reader much more about injustice than searing rhetoric could.

Take the example of Mrs. Klein, who appeared at St. Vincent’s with a large abdominal mass that had been growing for three years.  Dr. Pearson recounts her difficult, but successful, attempt to enlist faculty volunteers to biopsy the mass, interpret the slides, and eventually obtain coverage for Mrs. Klein in Galveston’s indigent care program, allowing her to undergo surgery. Although this entire process required eight months, it was doubly successful because the mass turned out to be benign. Meanwhile, the author describes her experience with the “luxury medicine” that took place nearby, a month long rotation with Doctor Houston whose internal medicine practice featured cosmetic Botox injections, laser hair removal, and “electrode” treatment for diabetic foot pain. This contrast between uninsured and luxury medicine highlights the irony of “no apparent distress.”

Another major theme of the book is uncertainty and error as experienced by a physician-in-training. Like many physicians, Dr. Pearson vividly  remembers her first significant medical error. When evaluating a St. Vincent’s patient, she forgot to report abnormal urinalysis findings to her preceptor. This, in turn, led to an incorrect diagnosis. Several months later the patient was found to be suffering from terminal kidney cancer. The author agonizes over her personal responsibility for the delay in his diagnosis (as I think most conscientious students and physicians would), even though it’s difficult to see how a single urinalysis result would have made a difference to the outcome.

Dr. Pearson relates a number of other instances of hesitation, error, awkwardness, and confusion as she progresses through medical school. As I noted earlier, these are all standard student responses, as are the array of hostile, difficult, engaging, and grateful patients. What makes No Apparent Distress stand out is the author’s ability to bring her feelings and these characters to life. She also has a distinctive voice, an attractive mixture of naiveté, passion, sharpness, and common sense that hooks the reader and makes him keep turning pages. Finally, this memoir is unusual in its focus on efforts to care for the uninsured patient as an integral part of medical education.

No Apparent Distress carries the subtitle, “A Doctor’s Coming-of-Age on the Front Lines of American Medicine.”  This is unfortunate because it evokes the hackneyed war metaphor that the author strongly condemns as contributing to the inhumanity of contemporary American health care. Fighting, battles, front lines—we need less of this violence and more of the caring that Dr. Pearson actually prescribes. So forget the subtitle, but read the book, which is a notable contribution to the medical bildungsroman.

Book Review: Balint Matters

20 Jun, 17 | by amcfarlane

Balint Matters: Psychosomatics and the Art of Assessment by Jonathan Sklar, London: Karnac, 2017, 254 pages, £27.99.

Reviewed by Dr Neil Vickers.

Michael Balint is mentioned in medical humanities circles as a revered ancestor, much as one might talk about William Empson as a significant figure in the history of English literary criticism. Everyone knows they’re important but surprisingly few people read either writer today or even know why they should. (An important exception is Josie Billington’s superb Is Literature Healthy? – reviewed here – which devotes a chapter to Balint.) Empson did theory before Theory, and Balint did narrative medicine before Narrative Medicine. Both men were at least as interesting as what came after them and yet both have become unduly sepia-tinted with the passage of time. Part of the reason for this fading in Balint’s case has to do with the fact that his clinical examples are firmly rooted in the sociological reality of the 1940s and 50s. The world Balint describes is hidebound by class. As a psychoanalytically-minded medical humanist, I occasionally press a copy of Balint’s classic, The Doctor, the Patient and the Illness (1957) on M.Sc students, but always with the caveat about his antiquated case material. ‘Someone should update it,’ I whisper, as they saunter out of the room.

Now someone has updated it. In his new book, Balint Matters, Jonathan Sklar, psychiatrist, psychoanalyst and leader of Balint groups (as well as a leading scholar of Ferenczi’s thinking) has produced a masterly summary of the Balint technique, along with a history of Michael Balint’s contribution to the theory of the doctor-patient relationship in collaboration with his wife, Enid. The second half of the book, entitled ‘Assessment’, which I won’t discuss here could be published as a volume in its own right. Assessing a patient for psychodynamic treatment is a topic on which surprisingly little has been written.

Michael Balint was born Mihály Bergsmann in Budapest in 1896. His parents were descendants of German-Jewish families who had been in Hungary for only two or three generations. (This German-Jewish world of Leopoldstadt is described in a wonderful series of autobiographical interviews that Georg Lukacs gave towards the end of his life, published as Gelebtes Denken). In 1916, young Mihály took the momentous decision to abandon Judaism in the hope of eluding the anti-Semitism that was still rife in Austro-Hungary and changed his name to Bálint (which means ‘Valentine’ in Magyar). He first came into contact with psychoanalytic ideas while a medical student in Budapest. His fellow-medical student and first wife, Alice Szekely-Kovacs, was one of Sándor Ferenczi’s analytic patients. Balint himself held off from having analysis with Ferenczi at first, and following the overthrow of the Hungarian Soviet Republic (which had bestowed a public professorship of psychoanalysis on Ferenczi, a world first) Michael and Alice fled to Berlin in 1919 to train as analysts at the Berlin Psychoanalytic Institute, where both had analysis with Hans Sachs, and where Michael did a PhD in chemistry and physics. The couple went back to Budapest in 1924 and became patients, colleagues and friends of Ferenczi. Balint became Ferenczi’s literary executor and the chief exponent of his thinking in the international psychoanalytic movement for decades. If the rediscovery of Ferenczi has reinforced the air of ‘always the bridesmaid, never the bride’ hanging over Balint, so has the explosion of interest in Winnicott, with whom he has so much in common.

Balint’s main contributions lie in two areas: psychosomatics, understood holistically as the study of the relationship between mental and physical disturbances; and the uses of therapeutic regression, which he explored in his other great book, The Basic Fault (1967). Sklar’s concern is with the first and specifically with the work Balint developed at the Tavistock Clinic in the 1940s and 50s with his third wife, Enid (Alice having died shortly after they arrived in England, to escape the Anschluss). Balint focused his attention on how the doctor’s attitudes and approach affected the course of an illness, and suggested that ‘the most frequently used drug in general practice was the doctor himself, i.e. it was not only the bottle of medicine or the box of pills that mattered, but the way the doctor gave them to his patient—in fact, the whole atmosphere in which the drug was given and taken.’

Sklar offers a number of clinical vignettes from Balint groups he has facilitated, describing how this works in practice. These case histories for me formed the heart of the book. I won’t spoil the reader’s pleasure by describing too many of them but among those that stood out for me was the case of a 70-year-old woman who was addicted to dihydrocodeine, a strong opioid analgesic. The woman had complained of a pain in the hip but a scan revealed only minor osteoarthritis. Her condition never seemed to improve. She made occasional visits to a cousin who lived far away and would ask her doctor for a bumper supply of painkillers to get her through. Then, much against the patient’s will, her daughter visited the GP and told her that her mother never went to see a cousin, and that the story was just a ruse to get more prescription opioids. The GP was appalled to realise that in the course of the previous year she had prescribed more than 3,000 dihydrocodeine tablets to this woman. In discussion with the group, the GP realised she knew nothing about her patient’s history. With a bit of help from Sklar, the group discussion included the following ideas: 1) the patient had an addictive relationship to the doctor; 2) the doctor felt depressed on behalf of the patient; 3) the doctor was unconsciously acting as a container for aspects of her patient’s mind, perhaps playing the part of a distant depressed mother, who gave her daughter ‘the wrong medicine.’ Feeling, noticing and understanding these projections didn’t cure the patient but they did give her doctor more freedom in the way she related to her. Addiction could now be seen as a way of representing early childhood deprivation.

Balint groups have also been used with psychiatrists. Sklar is fascinating on the attempts by some trainees to use Balint groups as a covert form of personal analysis. This arises not least because of the peculiar pressures of working with severely disturbed patients. The kinds of problems many of the trainee psychiatrists brought had to do with the ways in which they were made to carry aspects of their patients’ mental disturbances. Again, to pull out just one example, Sklar describes the case of a young psychiatrist, Dr L, overwhelmed by the suicide of a male patient who had been admitted at his mother’s request, shortly after the latter’s recent remarriage. Dr L bitterly regretted not administering ECT. Perhaps it would have saved him? She was also worried about the effect of the suicide on the other patients on the ward where the man was being treated. The nurses had suggested that a community ward meeting should be convened to break the news. The group listened to Dr L’s anxieties and asked for information about the patient’s history. It turned out that his biological father had killed himself by electrocution. Sklar asked how the ward meeting had gone. It had been fine for the most part though a psychotic woman had to be removed. This woman had told the meeting she was the angel of death and that there would be more deaths. Somewhat to the group’s surprise, Sklar observed that the psychotic woman had voiced what was in effect Dr L’s own worst fear about herself. Here was an instance of the need to listen to the very mad, as barometers of the most split-off emotions in the room. The psychotic woman had been excluded because she was voicing the emotions that were most unacceptable to the group. Dr L then remembered that her patient had killed himself on his mother’s birthday and that her recent marriage was to an electrician. These snippets, combined with the knowledge of the patient’s father’s suicide, shed new light on the hopes she had placed in ECT. They amounted to a re-enactment of the patient’s deep upset over his father’s suicide and at the same time offered a means to shut out and ignore the meaning of the mother’s marriage to an electrician. As a result of this meeting, Dr L softened down her until-then vigorously-asserted opinions about psychiatry’s exclusively organic basis.

For me, the most moving chapter in the book describes Sklar’s work in the early 2000s at a hospital in an unnamed city in South Africa. In 2007, it was estimated that nearly 6 million South Africans had HIV or AIDS, or 12 per cent of the population. This was overwhelming to the medical professions attempting to offer treatment at a time when antiretrovirals were beyond most people’s reach. Thabo Mbeki’s refusal to believe that HIV had anything to do with AIDS licensed widespread denial of the natural history of the disease and its behavioural causes. Of course, the doctors knew how AIDS was commonly transmitted but the overwhelming nature of the incidence of the disease and the need to shield families from stigma meant that patients were often treated as if they were just medically irrelevant dying people. The doctors for whom Sklar acted as a Balint facilitator told him of their anger at the way AIDS patients were treated as undeserving and subhuman. But they also described the primitive fears the disease evoked in the workplace. The whole practice of medicine was at risk of becoming warped by the cultural phantasies surrounding it.

Sklar’s book deserves to be read by anyone who wants to know how to listen to patients with an analytic ear, how to understand the dilemmas of clinical practice analytically, or why psychoanalysis still has so much to offer physical medicine. As his title makes clear, Balint matters, particularly in an environment where doctors and patients are urged to forget about the whole person and focus instead on gross symptoms and quick fixes. As a result of his endeavours, it should be easy for most readers to imagine a Balintian response to many clinical dilemmas. It is even possible that this brilliant exposition of Balint’s thought will initiate a new phase in the reception of this underrated and very fertile thinker, and bring about further extensions of the Balint model of the kind Sklar himself has achieved here.

Book Review: Eros and Illness

13 Jun, 17 | by amcfarlane

Eros and Illness by David B. Morris, Cambridge: Harvard University Press, 2017, 368 pages, £31.95.

Review by George Derk, PhD (gtd2gu@virginia.edu)

With the provocative pairing in the title of his new book, David Morris sets himself the task of dramatically altering the perceived relation between these two terms. As he contends, there exists less of an opposition and more of an affinity between them than we are usually willing to admit. At times, they even seem like bedfellows rather than rivals: “eros and illness both usually send us under the bedcovers” (27). Professor Emeritus of English at the University of Virginia, Morris began his academic career focusing on eighteenth-century literature before turning his attention to the medical humanities. In some ways this new book is a follow-up to and an elaboration of a couple of his previous ones, including The Culture of Pain (1991) and Illness and Culture in the Postmodern Age (1998), but at least one significant difference sets this recent work apart from the rest. Morris draws from his personal experience as caregiver for his wife, Ruth, after she was diagnosed with early-onset Alzheimer’s. It is this model of care, where provider and patient are the most intimate of partners, that allows Morris to explore the neglected dimension of eros in illness.

Morris begins by developing a capacious interpretation of eros, one that cannot be reduced to sexual activity nor to the Roman equivalent of Cupid. He instead derives his understanding of the concept from both the French philosopher Georges Bataille and the Canadian poet Anne Carson, and while he carefully stipulates that eros resists any easy definition, the word that comes closest to naming it is desire. He proceeds with a thorough examination of desire in the context of health care—or what he calls “medical eros”—mostly through illness narratives and doctors’ memoirs. He occasionally supplements these primary texts with analysis of literature and the other arts, as when he discusses the waiting involved in caregiving as akin to the waiting depicted in Samuel Beckett’s most famous play, or as when he finds an affirmation of eros in a series of nude portraits that Amedeo Modigliani painted while suffering from a terminal illness in wartime Paris. What he eventually uncovers amounts to an alternative medical genealogy, a recovery of the ancient figure of Asklepios as the embodiment of the obscured tradition of eros in Western health care. For Morris, the dominant stature of the other ancient healer, Hippocrates, and what he represents—biomedicine, or what Morris terms “medical logos”—has resulted in a reduction of the pluralism of healing practices, inhibiting the effectiveness of treatment for chronic illness.

From a certain angle, the book falls into a recognizable pattern of decrying how science-based, data-driven medicine has lost sight of its core humanistic principles, which I suspect would prompt many health care professionals to respond that the realities and demands of the job only allow for so much empathy and compassion. However familiar Morris’s argument may sound, the frequency with which medical logos runs up against its own limits warrants reiteration. If medical eros seems like some New-Agey solution to the problems of modern health care, it does a lot more good than some of the other reactions, such as over-treatment, that occur when doctors confront uncertainty or a lack of options. Perhaps the more insightful and original contribution of this book, though, is less its appeal to humanize medicine and more its belief that anyone can learn how to care for those who fall ill. Indeed, as Morris suggests with his own transformation from English professor to fulltime caregiver, the innate capacity to provide humane care stems from the eros that one already bestows onto his or her loved ones. The relative absence of Ruth’s story further underscores that this book chronicles the experience of illness not from the perspective of the patient but from that of the caregiver, although at times the boundary blurs. Morris himself becomes a patient after suffering a heart attack, which he attributes to the stress of providing care and which he takes as an example of a “supradyadic effect,” or how one’s health is interdependent on the health of those in one’s social network.

The book, overall, reads like part Bildungsroman of a caregiver and part philosophical treatise on the nature of caregiving. Morris strives to preserve the desire that drew him to Ruth in the first place and sustained them through three decades of marriage. In the face of regret at not recognizing Ruth’s symptoms earlier, guilt for his irritability towards Ruth’s increasing debility, and, most of all, anguish at the terrible inverse logic of dementia (“she was fading emotionally, just when I felt in greatest need of her ordinarily loving expressiveness”), Morris maintains that eros doesn’t necessarily have to evaporate altogether and may actually serve as the greatest resource when medical logos has no answers (39). Along with the personal experiences that he relates, the case for eros is strongest when grounded in specific instances wherein biomedicine finds itself ill-equipped. Morris’s inclusion of the writings from people with non-normative identities—such as the African-American, lesbian poet Audre Lorde who claims in The Cancer Journals (1980) that the “love of women healed me”—proves particularly effective in this regard. Dwelling on the accounts from those at the margins testifies to the potential of medical eros to help remedy the imbalance of treatment for underserved communities. In addition to the benefits made available by eros, the cost of not acknowledging its contributions equates to an egregious oversight. Morris cites an estimate by the American Association of Retired Persons that within the U.S. 36-38 million family caregivers provide $350 billion (approximately £270 billion) in unpaid labor annually.

Yet counterexamples exist to raise questions about this book’s insistence, in its more unrestrained moments, on championing eros as a possible panacea. The anti-psychiatry movement, which Morris overlooks, would seem to embody many of the characteristics of medical eros. For all the necessary reforms that it has lead to, it has arguably been too successful in undermining biomedical treatments for psychiatric ailments. While the dismantling of mental health care results more directly from draconian cuts to funding than from this particular movement, the U.S. continues to live with the legacy of an impaired system of psychiatric care. That said, Morris anticipates an objection such as this by advocating for a balance between eros and logos. His goal, as he states it, is for biomedicine “to recognize eros and to deal with it—the good and the ill—mindfully” (13).

The principal testament to eros that Morris offers may ultimately be the fact that he managed to write this book. While caring for Ruth, Morris admits to feeling drained of his normal passion for writing: “I could write, but writing lacked all pleasure, joy, and desire” (251). As the examples curated by Morris attest to again and again, illness throws eros into disarray. One of the more telling instances in the book involves the poet Jane Kenyon, suffering from end-stage leukemia, who is reminded by her husband that the bed she lies on is the same site of their countless sessions of lovemaking over the years. This is the type of recognition that Morris prescribes, an awareness of how a bed, as object and symbol, stands for the underlying bridge between eros and illness. The challenge of the latter consists of finding new ways to realize the former. The strength of Eros and Illness resides in how Morris models the counteracting of illness by eros through his writing, eloquently giving voice to Ruth, who lost hers, and rediscovering his own in turn.

Book Review: Notes From the Sick Room

9 May, 17 | by amcfarlane

Notes from the Sick Room by Steve Finbow, London: Repeater Books, 2017, 343 pages, £8.99.

Reviewed by Alan Radley, Emeritus Professor of Social Psychology, Loughborough University

This is a book about sickness, more specifically about the illnesses of a number of well-known artists and philosophers. It is also about the illness history of the book’s author, Steve Finbow. He uses his own experiences of illness (and they are many and varied) to introduce the reader to the travails and writings of the individuals whose sickness he explores. The word ‘travails’ is apposite here as it suggests that illness can be, if not a life’s work, then a determining factor in how people live their lives, as well as rendering their experience meaningful through writing and other forms of art. Key to this is the idea that being trapped in a diseased body opens up the possibility of escape through self-examination, issuing in a productive outcome. To make this argument Finbow explores in detail the circumstances and reflections upon illness of several artists and writers. He introduces us to cancer in the life and death of people such as J G Ballard, Iain Banks, Christopher Hitchens and John Diamond. Finbow details the sufferings of Frida Kahlo after the bus crash that severely damaged her pelvis; the effects of being shot upon Andy Warhol and his art; the denials of illness that were part of Bruce Chatwin’s extensive travelling; and the descriptions of and insights into illness offered by writers such as Katharine Mansfield and Virginia Woolf.

How should one tackle a subject like sickness while providing detailed biographical detail about one’s own and others’ illness, at the same time weaving a complex argument drawing upon philosophers such as Nietzsche and Foucault? Finbow achieves this by treating the book as a virtual hospital – a clinical space – populated by celebrity patients and some celebrity doctors (e.g. Susan Sontag). The entries and exits from the various departments to which he escorts the reader are managed in part by introducing us (in detail) to his own medical history. These extend from a pain in the buttock to severe pancreatic necrosis and a spell in intensive care, all illuminated by details from his medical notes. In the case of the pain in the buttock, Finbow uses this as an approach to the question of whether cancer is alien to or part of the self and, in the case of the latter, how it might become so. Turning on the issue of denial, he argues that the denial of disease (“flight to sanity”) is not healthy, but that health tolerates disintegration and, by implication, transforms it through art and writing.

The idea that illness and the state of being sick can be the bases of productive art is expressed in a quote that Finbow provides, in which John Berger says of Frida Kahlo: “The capacity to feel pain is, her art laments, the first condition of being sentient. The sensitivity of her own mutilated body made her aware of the skin of everything alive – trees, fruit, water, birds, and, naturally, other women and men. And so, in painting her own image, as if on her skin, she speaks of the whole sentient world” (322). By drawing attention to this Finbow is agreeing with Nietzsche and Foucault that art is an act of freedom-making borne of suffering. This extends to the person’s life – including their art – so that what is rendered is expressive of a way of being rather than illness per se. It is perhaps for this reason that he objects to Susan Sontag’s attack on the use of metaphor as aestheticizing the “what should not be imagined”  – the abhorrent disease that is cancer. To this Finbow replies, “what nonsense”, and argues that when Sontag wrote about cancer in her book Illness as Metaphor (1978) she was, in effect, aestheticizing it.

The problem here is that there is a difference to be made between aesthetics and aestheticization. Aestheticizing, at its root, directs the viewer/reader to the artist/author rather than the object. An artwork is the product of a transformation that directs our attention to the ineffable; it is this that, in part, gives it aesthetic value. This is not always an easy line to draw, but it matters in this book because Finbow treats of both aesthetics and aestheticization in the course of his descriptions and discussions. By dramatising the artists and writers he discusses as either patients or doctors, Finbow risks muddling this distinction. So, for example, he writes: “Dr Sontag sits back in her chair, her fingers pyramided above the desk, the silver streak (poliosis) in her hair illuminated by the overhead fluorescent strip lights”. And later, “She closes the book, gets up, takes me by the crook of the arm and says authoritatively, ‘Let’s go to your office. I think we need to have a little chat’” (300). For this reader at least, these passages had the effect of displacing attention from the book’s argument about illness to the author’s interest in his subject matter, which at times I found unhelpful.

In terms of the book’s overall aim Finbow goes some way to demonstrating that illness improves the work of the artists considered, though he does not show exactly how art draws upon illness. Instead, the book remains a bricolage of ideas that coheres as a sort of image, a story of the necessity of ill health in our lives. Its overall message – drawn from Nietzsche – that life needs illness, is incomplete without it, is an important one. Health is not separate from illness, and a deeper understanding of health includes the idea that it can be strengthened by illness. And for that, and its historical and biographical detail, Notes from the Sick Room makes for a most useful and interesting read.

Alan Radley is the author of Works of Illness: Narrative, Picturing and the Social Response to Serious Disease. Ashby-de-la-Zouch: InkerMen Press, 2009.

Book Review: Deleuze and Baudrillard: From Cyberpunk to Biopunk

25 Apr, 17 | by amcfarlane

Deleuze and Baudrillard: From Cyberpunk to Biopunk by Sean McQueen, Edinburgh: Edinburgh University Press, 2016, 288 pages, £70.

Reviewed by Dr Anna McFarlane (University of Glasgow)

Sean McQueen’s first monograph ambitiously aims to create “a cognitive mapping of the transition from late capitalism to biocapitalism” (1) and to do this through tracing trends in science fiction from the cyberpunk movement of the 1980s and early 90s through to a subgenre only recently designated as ‘biopunk’. Following Fredric Jameson, a scholar known for his analysis of postmodernism and Marxism in late capitalism, McQueen argues that cyberpunk is the quintessential literature of late capitalism and therefore a fitting place to begin his analysis of this recent cultural movement from late capitalism to biocapitalism which, McQueen argues, “is the frontline of capitalism today, promising to enrich and prolong our lives, whilst threatening to extend capitalism’s capacity to command our hearts and minds” (1-2).  In McQueen’s schema this is a transition from the ‘control’ of late capitalism to the ‘contagion’ of a biocapitalism that he argues is an increasing threat to individuality and the autonomy of the body.

The book’s title belies its contents to some extent, given that the first half of the book does not focus on texts from cyberpunk’s ‘canon’, such as it is, but focuses on the ‘cyber-‘ aspect of cyberpunk to investigate texts that engage with the concept of control. Anthony Burgess’s A Clockwork Orange (1962) is not generally considered cyberpunk-proper in reviews of the genre, but its themes of control, and of the renegade individual fighting subjection by the state, certainly resonate with the work of figures in the cyberpunk canon such as William Gibson and Pat Cadigan. Another of McQueen’s chosen texts, JG Ballard’s novel Crash (1973), has been subject to debate about the extent to which it can be considered science fiction, let alone cyberpunk. Such deviations from the ostensible theme may be traces of the monograph’s origins as McQueen’s PhD thesis, but their reworking in this monograph is satisfying for those coming to the book for considerations of Deleuzian and Baudrillardian thought, who might consider the texts to which their philosophies are applied a secondary consideration. McQueen successfully cuts through the archaeology of decades of readings and misreadings of these two thinkers, often with a sharp word for scholars who come to the original philosophy with their own preconceptions, and hence leave it repeating unjustified or inconsistent critiques of these two thinkers. His own readings come across as fresh and new, perhaps because he works against a backdrop of scholars who have become too accustomed to invoking the names of Deleuze and Baudrillard without putting in the time to tackle their complex bodies of work first-hand.

The primary interest in the book for scholars of the medical humanities comes in the latter half, where McQueen turns to biopunk. This is a relatively new term in science fiction scholarship (following in the -punk traditions of cyberpunk, steampunk, and dieselpunk, to name but a few), but McQueen finds the term’s origins in classic science fiction, such as Mary Shelley’s Frankenstein (1818, commonly considered science fiction’s foundational text) and HG Wells’s The Island of Dr Moreau (1896). The first example of contemporary biopunk McQueen draws upon is Vincenzo Natali’s 2009 film Splice, in which a couple who work for a pharmaceutical company use DNA to create a hybrid creature.

The film draws on the tradition of Frankenstein to express fears of uncontrollable technological change, while also specifically critiquing a biocapitalism guided primarily by profit margins, rather than by philosophical or ethical considerations about the effects of its research.

McQueen’s readings of Deleuze and Baudrillard focus on some of these thinkers’ key concepts, how these have been relevant to cyberpunk and its investigation of ‘control’, and how they might function in contemporary debates about the ‘contagion’ that McQueen finds characteristic of biopunk. He contrasts Deleuze’s concept of the ‘body without organs’ with Slavoj Žižek’s ‘organs without a body’, both of which attempt to offer a representation of desire without the restrictions of hierarchy (to draw on only one valency discussed in the book). Žižek provides something of a bridge between Deleuze and Baudrillard here, as his Lacanian impulses are echoed in Baudrillard’s attempts to consider psychoanalysis, and how it might function in a society defined by the imaginary realm of consumption and consumer fetishism. Under biocapitalism, the consumption impulse could quickly move towards the point where the market’s freedom to use cells and discarded bodily tissue for profit is in tension with the long-held belief that it is immoral to profit from the cells of organs – as argued by Marlon Rachquel Moore in a recent article for BMJ Medical Humanities, “Opposed to the being of Henrietta: bioslavery, pop culture and the third life of HeLa cells”, which teases out the historical racial injustice that is now being relived, without hope of reparations, by the family of Henrietta Lacks whose ‘immortal’ cells continue to be the basis for untold profit in the biotechnology industry. The move from co-opting the labour of classes of the population under slavery, and later forms of capitalism, to co-opting the use-value of the body itself is the journey with which McQueen engages here as he moves from readings of Karl Čapek’s R.U.R. (Rossum’s Universal Robots) (1921), the science fiction play that brought the word ‘robot’ into English usage, and Eric Garcia’s The Repossession Mambo (2009, filmed in 2010 as Repo Men) which sees a biounderclass fitted out with artificial organs and forced to pay crippling interest rates or face having their organs repossessed – and dying in the process.

The electronic copy of this book, from which I reviewed, leaves something to be desired. Like many academic books, it uses endnotes which cannot be easily referenced as one reads in the electronic form, and the book’s use of abbreviations for the major works of Deleuze and Baudrillard exacerbate this problem as the reference list at the beginning of the book cannot be easily consulted. This makes for particular difficulties when quotes from the major texts are picked out as introductory to chapters and their sections, leaving the reader occasionally unsure as to which of the theorists is being quoted. However, the content of the book ultimately extends the case for considering biopunk as a unique and important subgenre of science fiction that, in turn, deals with the unique and important development of biocapitalism. McQueen’s readings of Baudrillard and Deleuze manage to scrape away some of the sedimented assumptions and misreadings of the past and offer exciting new ways to consider their work. His reference to both major and minor texts from both thinkers will introduce readers to insights they had not previously considered – again, especially relevant to students of the medical humanities might be Baudrillard’s comparison between cancer and capitalism in The Transparency of Evil (1990), the biopolitics of organ transplantation in Kazuo Ishiguro’s Never Let Me Go (2005), or Thierry Bardini’s account of subjectivity after bioengineering, Junkware, which McQueen turns to in his final chapter reading of Brandon Cronenberg’s Antiviral (2012).

As I pointed out above, McQueen’s book does not always stick to the limits laid out in his title, (for example when he reads texts that are not considered archetypically ‘cyberpunk’ under that rubric, or in the latter half of the monograph where Foucault’s thought is just as crucial to his argument as that of either Deleuze or Baudrillard), and his book should come with a warning for those who have never tackled Deleuze or Baudrillard before, given the slew of concepts that are not fully unpacked here for beginners. However, the book that emerges is cohesive and amounts to an often passionate argument for considering class consciousness in the era of bioengineering, biohacking, and biopolitics.

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