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Death By Suicide: The Beginning After the End

23 May, 17 | by amcfarlane

The Levelling, directed by Hope Dickson Leach

On general release in UK cinemas now

Review by Professor Robert Abrams, Weill Cornell Medical College, New York

Even before you view The Levelling, a film written and directed by Hope Dickson Leach, its title gives off a disquieting aura; you feel you are about to enter the maelstrom of a fearsomely destructive force. And so you are. The word “levelling” itself connotes complete destruction or possibly rageful retribution. One can only hope that there might also be a corresponding coda of reconstruction and healing.  The viewer of this film is ultimately witness to both: a saga of suffering known to clinicians as complicated grief, and its protracted resolution, of which some of the details will be outlined here.  But the viewer’s worst fears are realized at the beginning, in the primal mayhem of a drunken party that plays along with the opening credits.

In the next scene a young woman, Clover Catto (Ellie Kendrick), is returning home to the family dairy farm from University for the funeral of Harry (Joe Blakemore), her younger brother. Harry shot himself to death, even though their father Aubrey (David Troughton) insists it was an accident after a night of drinking. Aubrey is indeed a difficult man, described with considerable understatement as “not an easy father.” He is neglectful of animals and indifferent to people, especially it seems, to his daughter. Whenever confrontation with emotion becomes unavoidable, he recoils: “You have to get up, get out of bed, and milk the bloody cows.”

Determined to understand what happened, Clover surveys the flood-ruined wreck of a farmhouse in search of memories. She blames her ostrich-like father for her brother’s unexplained changes of personality, but Aubrey is inured to any suggestion of feeling or loss.

At least in one way her father had got it right. Clover is not a good fit for farm life. She cannot abide the killing of animals or cruelty; she cannot eat them, either; a commercial cattle farm is no place for a person with these sensibilities, even for one training to be a veterinarian. No respect for any form of life and no emotional attachments, whether human or bovine, are allowed in Aubrey’s world.

Father and daughter have been divided, one might say imprisoned, by a mutual feeling of abandonment and injustice. But Aubrey is still the most important man in Clover’s life, hate becoming psychologically equivalent to love once the algebraic negatives are removed. In the Catto family’s no-communication bubble, Clover had hoped for nothing as keenly as to be loved by her father; her father had privately yearned for her to be the one to initiate a rapprochement, had wanted Clover to want to return home, to support her troubled, probably mentally ill brother, and to shore up Aubrey himself as well.

What is the relevance of this film for readers of Medical Humanities? The Levelling deals with a conundrum seen often enough in clinical practice—and also in life: the consequences of suicidal death for the living. Death by suicide entails a double death, exactly as described by the clergywoman-therapist in the film, encompassing both the death of the person and the death of the “person you thought you knew.”  Healing is necessarily intricate, and it is accurately and sensitively presented in this otherwise disturbing film.  The Levelling can be summed up as a chilling depiction of what psychiatrists now consider to be “complicated grief.”  Complicated grief is a syndrome of greater severity, complexity and persistence than ordinary grief.  It is a condition in which the circumstances of the death interfere drastically with mourning.  Thus the survivors must deal first, before anything else, with the traumatic aspects of loss, with shock, anger, and their own sense of injury; this principle applies to the aftermath of a suicide or to any premature or unnatural death. Acknowledging the traumatic aspects of the event itself and then the personal meaning of the death is a foundational precondition for any meaningful process of bereavement.  For now, the clergywoman-therapist tells Clover, “This is about you.”

The melancholic beauty of the music in The Levelling and the camera’s focus on an untidy farm are fitting backdrops to a messy, circuitous and wrenching emotional path to healing from complicated grief. The brilliance of the film lies in its measured manner, the way we slowly become privy to the source of the characters’ anger and sorrow, their journey from death and destruction to a long-delayed but never-too-late recognition of their love for each other. “Levelling” in the end implies a new beginning on an even playing field.

Address for correspondence: rabrams1717@gmail.com

New Editor for Medical Humanities

18 May, 17 | by amcfarlane

BMJ, a leading medical knowledge provider, is pleased to announce Brandy Schillace PhD as the new editor of Medical Humanities.

Dr Schillace is Senior Research Associate and Public Engagement Fellow for the Dittrick Museum of Medical History, College of Arts and Sciences, at Case Western Reserve University, US. For ten years, she managed the medical anthropology journal, Culture, Medicine, and Psychiatry, and edited its first medical humanities special issue. An accomplished medical humanities scholar, speaker and author, she continues to serve as chief editor of the medical humanities and review blog MedHum | DailyDose. Her recent books include the co-edited collection UNNATURAL REPRODUCTIONS, on “monstrous” birth across time and genre (Cambria), DEATH’S SUMMER COAT, exploring cultural approaches to death and dying (E&T UK, Pegasus US), and CLOCKWORK FUTURES, a social history of technology and the “steampunk” aesthetics of invention (Pegasus, US). In all her work, Dr Schillace seeks to uncover the human stories at the centre of science and medicine.

Dr Schillace will take over as editor from Deborah Bowman from 1 July 2017. Welcome to Dr Shillace and thank you to Professor Bowman for all of her excellent work on the journal.

Stories From the Birthing Room

15 May, 17 | by amcfarlane

Sue Wiseman, Professor of Seventeenth Century Literature at Birkbeck University of London, is organising an event entitled “Stories From the Birthing Room” during Birkbeck’s annual Arts Week. Here she discusses the event and some of the issues that she hopes will be open for discussion.

‘I wil not use any kind of sorcery or incantation at the time of travail [labour] of any woman; and .. .I will not destroy the child born of any woman, nor cut, nor pull off the head therof or otherwise dismember or hurt the same’ (Evenden, 2000, appendix A). This was the oath sworn by Eleanor Paed in sixteenth century Canterbury and, notwithstanding the scenes of carnage conjured here, she was a woman’s friend in time of trouble – a midwife. What do texts like these begin to tell us about the early modern birthing room? “Stories From the Birthing Room” combines a seminar and scripted performance to analyse what we can learn when we combine law, myth, life-narrative and theatre as they disclose what was at stake in birth.

A woman’s lying-in was a complex time in early modern England. It was both a time of ritual and celebration and, potentially, a time at which soci0-economic ruptures and tensions could be made discomfortingly, even murderously, real. Perhaps paradoxically, given that it was expected to be a time of sequestration and secrecy (some midwives’ contracts specified secrecy from men), the lying-in process also generated a plethora of complex meanings. From the knives that might be used to cut the woman, or to cut free a dead foetus, to the midwife or to any appearance of a man, most presences in the birthing room were imbued with significance, uncertainty, and often conflict. Accordingly, what happens in the secrecy of the birthing room has left a large textual corpus.

For many years scholarship was, in many ways, dominated by the single issue of men versus women as controllers of birth. This debate focussed on the gradual masculine takeover of the birthing chamber in the eighteenth century. At first it was shaped by scholars’ “uncritical acceptance” of the self-interestedly negative image of midwives presented by the men who superseded their authority, and then characterised by scholarship vigorously and effectively challenging that account (2000, p. 1). The past two decades have seen a shift in interests with more research focussing on the seventeenth century and earlier, and a welcome diversification of topics and approaches. For example, Doreen Evenden has made a detailed study of the licensing of London midwives and tracked many of their lives and, setting the lying-in chamber in the context of court testimony, Laura Gowing has illuminated what was at stake in that room and how economic and legal forces, as well as powerful feelings, shaped women’s relationships to each other (Evenden, 2000; Gowing, 2003). Thus, it is clear that some of the information that discloses men’s rise to power over both birth and the way it was recorded in writing can tell us about other aspects of society too, and that we can also use fresh sources and begin to consider togther texts scholars usually divide up along disciplinary boundaries – such as strictly medical, legal texts, theatre texts, and case notes.

Stories From the Birthing Room’ starts with the all-female space of the chamber of birth to show afresh the many ways it radiated significance in early modern England. Putting beside each other texts from very distinct spheres of writing – legal, theatrical and medical – we hope to show the power of women’s secrets to generate revealing responses in many kinds of writing. At the same time, the seventeenth century is not well served by resources on the birthing room and we will make these some of these stories lastingly available to a wider audience by dramatizing and filming them.

The event’s hypothesis is that uniting the archives and approaches usually used by social historians, historians of medicine, literary scholars and practice-led theatre researchers would be likely to extend our sense of the ways the stories of lying in were told and potentially point to new approaches. So, we open with a seminar held by London Renaissance Seminar at which Dr Leah Astbury will discuss preparations for birth. Dr Adrian Wilson, following up his path-breaking work on women and obstetrics, turns his attention to birth and myth, exploring the myths surrounding the Caesarian section of Jane Seymour, mother of Henry VIII’s male heir – who died soon after his birth. Dr Isabel Davis asks about the medical and political implications of Mary Tudor’s expected, celebrated, but never delivered, infant. The second part of the event brings together texts from the courtroom, case history and theatre chosen by scholars in different disciplines. Thus, building on her research in Common Bodies Professor Laura Gowing has chosen texts from case papers and legal testimony. Dr Isabel Davies, drawing on her work on conception which involves both pre-modern texts and collaboration with artist, Anna Burel, speaks on legal and religio-politcal texts on Mary’s pregnancy. Susan Wiseman, exploring the elite and the non-elite in seventeenth-century England, selects texts from case notes that in telling birth narratives shape a life-story for women whose lives are rarely written – the vagrant, the disabled, the domestically abused. Crucially, Dr Emma Whipday, playwright, theatre director and academic, has brought together her roles by selecting theatre texts that tell, but also question, the scene of birth.

Considering together legal, theatrical and ‘medical’ texts generates both findings and questions. For example, if we see theatre, court and case history together it is immediately clear that voice was important, and often authoritative, in seventeenth-century oral-literate culture. Eleanor Paed’s oath was both oral and textual, acknowledging the diverse literacies present, but it was not part of a residual culture in being heard. Rather, it was part of a culture simultaneously spoken and written; though it can be approached diachronically as shifting in balance towards the prioritisation of the written, it is also the case that the definitive shift took place in the eighteenth century. As Adam Fox puts it, in sixteenth- and seventeenth-century England “the three media of speech, script and print infused and interacted with each other in a myriad ways” (Fox, 2000, 5). In the texts we explore, women’s voices appear in the trial testimony, yet of course they are changed by the process of recording; in seeing women’s agency in such testimony how should we balance the fact that they record public testimony actively made against masculine and institutional shaping? How should we understand female voices on the stage? In what ways, if any, should we hear the voicing of women’s experience by a female playwright as distinct from the male playwright’s texts about lying-in? If, in the astrological notebooks and case notes on troubled people of practitioner Richard Napier’s, women outnumber men and many of these were suffering problems that sprang from lying-in, how far can we consider ourselves having access to the thoughts of the poorer women of Buckinghamshire and Northamptonshire who told him their stories of “dangerous labours” (MacDonald, 1981 38)?

Thus, in an exchange we will hear during Emma Whipday’s performance, in Margaret Cavendish’s play The Convent of Pleasure (1668) a character asks if a midwife has come to attend her lady. She hasn’t because “she cannot come, for she hath been with a Lady that hath been in strong labour these three days of a dead child, and ’tis thought she cannot be delivered”. However, when the midwife suddenly does arrive it is because the earlier woman “could not be delivered, and so she died”. “Pray tell not our Lady so”, replies the first “for, the very fright of not being able to bring forth a Child will kill her”. (Cavendish, 1668, scene ix). Such material presents a scenario strikingly similar to that found in legal papers when birth goes wrong, in case notes and apparently in women’s testimony. It has the strong appearance of being a record of speech, yet, of course, it is a prescription for speech – a play (although, in fact, a play we think was not performed at the time of its composition and publication). So, as we see, seventeenth-century England was not operating with a sense of an original ‘voice’; if plays and case records don’t give us access to an unmediated subject that is something they share with other texts of the period, yet, at the same time, in many cases it is a female voice that has been heard or imagined, in a public situation.

While if we ask which text – play, oath, ballad or case note – gives greatest access to the lying-in room, we can give no definitive answer; they tell us different things – and often ones which exist in contradiction. Yet, putting together a range of sources is likely to tell us much more than looking at a single kind of text.

References

Cavendish, Margaret. Plays, London, 1668

Evenden, Doreen.  The Midwives of Seventeenth-Century London, Cambridge: Cambridge University Press, 2000.

Fox, Adam. Oral and Literate Culture in England 1500-1700, Oxford: Oxford University Press, 2000.

Gowing, Laura. Common Bodies: Women, Touch and Power in Seventeenth-Century England, New Haven and London: Yale University Press, 2003.

MacDonald, Michael. Mystical Bedlam: Madness, Anxiety, and Healing in Seventeenth-Century England, Cambridge: Cambridge University Press, 1981.

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.

Auditory Hallucinations, Agoraphobia and Extremism as Portrayed by Actor Ahmed Magdy

3 May, 17 | by amcfarlane

In this podcast, our Screening Room editor, Khalid Ali, explores the role of film in shining a light on mental illlness, dysfunctional families, and the rise of religious fanaticism with Egyptian director Ahmed Magdy.

Recently introduced to acting, Ahmed talks about his portrayal of three challenging characters: a young man imprisoned in his mother’s house in Gate of Departure (Karim Hanafy, 2014), an extremist who converts from Islam to Christianity in The Preacher (Mawlana) (Magdi Ahmed Ali, 2016), and a man troubled with persistent auditory hallucinations and a legacy of inherited mental illness in Ali, the Goat and Ibrahim (Sherif El Bendary, 2016).
Ahmed Magdy studied Law in Ain Shams University, but pursued his passion for film by taking part in Egypt’s independent cinema scene since 2008. He produced and directed a couple of independent films, and directed his own short, Caika Bel Crema (A Cream Cake, 2008).

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.

A Summer of CfPs!

18 Apr, 17 | by amcfarlane

The medical humanities in the UK is seeing an explosion of opportunities at the moment with a number of events coming up and several calls for papers available for your consideration – so if you were worried that you might get bored over the summer then fear no more! I pulled these together with the generous help of disabilities scholar Dr Hannah Tweed (@hannahhctweed, @mhrcglasgow) who tirelessly sends out medical humanities news to the Medical Humanities Research Network where you can find these events and many more.

Our first CfP is for an edited collection on disability and research currently being put together by Dr. Bronagh Byrne (Queen’s University Belfast) and Dr. Ciaran Burke (Ulster University) which will consider social research methods and their usefulness for disabled respondents. Abstracts are due on Monday the 8th of May.

Upcoming from the Leeds Centre for Medical Humanities on the 27th of April is the latest seminar in their series, “Augmenting the Body: Disability, Bodily Extensions and the Posthuman”. This seminar, on “Work and the Posthuman“, will feature Stuart Murray and Rebecca Randell and takes place on the 27th of April. Also taking place in Leeds is a symposium on Medicine and the Senses which takes place on the 1st of June. The call for papers is open until the 1st of May.

In advance of a CfP, the Northern Network for Medical Humanities have issued a ‘save the date’; Durham University will be hosting the inaugural NNMH Congress, on the 14th-15th September 2017.

The London Conference in Critical Thought is hosting a stream entitled “Habit, Addiction and Thought”. The call for papers has now closed, but the conference takes place at London South Bank University from the 30th of June to the 1st of July.

Also upcoming is a special issue of Modern Fiction Studies on “Modernist Fictions of Disability” to be edited by Maren Linett. Essays should be submitted in full via Manuscript Central, but you can ask the editor for further information at mlinett@purdue.edu.

Our next CfP is for a conference to take place in Berlin from the 27th to the 28th of October 2017. The conference, entitled “Stories of Illness/Disability in Literature and Comics“, is being organised by the PathoGraphics research team at the Freie Universität Berlin and abstracts are due by the 31st of May.

The Canadian Journal of Disability Studies is seeking full submissions for two relevant special issues, one on “Disabled Sexualities” with a deadline of the 1st of June, and the second on “Survivals, Ruptures, Resiliences: Perspectives from Disability Scholarship, Activism, and Art” where you can send manuscripts until the 1st of October.

Dr Ian Walsh and Dr Helen Noble, from Queen’s University Belfast, are the guest editors of a special issue of the journal Healthcare, entitled “Humanities and Healthcare”. Full submissions can be submitted until the 31st of July.

Perhaps a bit late to be posting this next one, but if you have a relevant paper in your bottom drawer you might consider submitting it to  Taking Back Health: Health Tomorrow, the fifth volume in the series “Health Tomorrow: Interdisciplinarity and Internationality” (HTII). Full submissions should be submitted by the 15th of May.

…And if all that isn’t enough to keep you busy then you can consider submitting a blog post on your research to appear on this blog, (just email the reviews editor at anna.mcfarlane [at] glasgow.ac.uk), or watch this space where we will be posting more news and events in the weeks to come.

Exhibition Review: Transplant and Life

11 Apr, 17 | by amcfarlane

‘Transplant and Life’ Exhibition, Royal College of Surgeons, 22 November 2016 – 20 May 2017

John Wynne and Tim Wainwright

Review by Emma Barnard
Having on a couple of occasions visited the captivating, slightly morbid Hunterian Museum, housed in the majestic Royal College of Surgeons, Lincolns Inn Fields, my initial thoughts when being asked to write a review were, ‘How on earth could contemporary artists compete with such a visual feast?’

Well, compete they did and artists John Wynne and Tim Wainwright certainly didn’t disappoint. The exhibition is the result of their time spent with patients at the Royal Free and Harefield hospitals. As a fellow artist working within medicine, I understand all too well the complexities of gaining an insight into this fascinating world and the people, both doctors and patients, who work and are treated within it.

The exhibition “Transplant and Life” highlights and explores the intimate patient experience that is pertinent to transplant patients. It is contained within three sections:

The magnificent Crystal Gallery shows sixteen light boxes containing portraits of said patients, who have been captured beautifully by Tim Wainwright; they caught my gaze in a challenging, questioning way and long held it as I looked up at them. These patients are strong, courageous people and this is evident within their portraits. Not only stunning visually, the work also fills the museum with sound and voice in an integral and accomplished way. John Wynne has utilised ‘transducers’, devices that transform the glass cabinets themselves into sound producing surfaces so that the installation is sensitive to, and blends well with the space. The portraits can be viewed from many different angles and different floors and is successful on all levels, offering unusual viewpoints.

The double curved staircase which links the two main galleries features a video filmed during one of the patient participants’ thrice weekly dialysis sessions, illustrating what the person endures on a regular basis.

The Qvist Gallery has been turned into a black box; displayed in front of me is a video projection of still photographs, gently layered images, one fading into another, creating a surreal landscape of human beings discussing the patient experience from several different perspectives. Sounds emanate from the images on either side of me, one a handbag and the other a pair of bloodied theatre shoes.

People from all walks of life and social standing, and sometimes their relations, discuss their experiences of receiving a new organ, highlighting the fact that a human being embodies so much more than their diagnosis. Each person has their own unique narrative, they exist as three dimensional and not just as the recipient of someone else’s organ. The people interviewed are in various stages of organ transplant – some have recently had the transplant, others are recollecting something that happened ten years ago, although it still influences the way they live. It appears that organ transplantation leaves a legacy of sorts, an experience that remains with you on life’s journey. Naturally it’s an emotive subject and I wonder if that is the side that these patients have presented to their doctors or that this insight has been revealed only to the artists who orchestrated it and created the space needed for them to talk from the heart about their experiences.

They speak fondly of their donors, one individual naming her second child after the person who donated the organ that kept her alive.  Amongst the staring faces we see briefly the beauty of the surgeon’s hands working on a part of someone’s anatomy to the sound of church organ music, adding drama to the scene – a graphic reminder of what these patients have endured.

It is interesting to view how some people appear removed from the experience and talk about it from a very matter-of-fact medical viewpoint. This echoes my experience as an artist working with patients within an ENT department: sometimes the patient takes on the doctor’s language whilst they belong in the medical world.

After watching one still image gradually fade into another, I was taken by surprise by the last image: a portrait that I initially thought was a still image until I noticed one of his shoulders rising and falling as he breathed.

The following poem helps to summarise the experience that these people endured; it was written by one of the patients in the film, James Tottle, who along with other organ recipients has formed a band called the Gifted Organs:

Restoration

It’s all done and dusted

In your hands entrusted

You’re the key to my restoration

From such loss you’ve helped me

Led me to my sanctuary

You’re the key to my restoration

This exhibition is a poignant reminder that the objects contained within the glass jars of the Hunterian Museum are of human origin.

I was curious to ask the artists the following questions:

What inspired you to embark on this work?

JW: This project follows directly on from the first Transplant project Tim and I did nearly 10 years ago, when we were artists in residence at Harefield Hospital for a year. I’ve always been interested in medicine, having grown up in a ‘medical family’: my father was a doctor, my mother was a nurse, and my sister became a doctor. I was intrigued to explore the soundscape of the hospital environment, and I have a long-standing interest in the voice and with socially-engaged arts practice, so the idea of recording first-hand patient stories also appealed to me. I enjoy the challenge of creating circumstances in which people feel comfortable enough to share what is most important to them.

I also enjoy the challenge of bringing my practice-based research into subject areas that are new to me: I start out, to paraphrase John Cage, not knowing what I’m doing – I know how to do that.

For Transplant and Life, we revisited some of the heart and lung transplant recipients we worked with 10 years ago as well as working with abdominal transplant patients at the Royal Free for the first time. Getting such a long-term view of the transplant patient experience is rare, if not unique, and it was one of many motivating factors for Transplant and Life.

TW: When I was doing the original ‘Transplant’ exhibition, I began thinking about the nature of the transformation experienced by the people I was meeting. They chose to pass through a process that took them close to death, but brought them back again into a new reality.

Alongside the medical and physical elements, there was an experience of suffering and of renewal that seemed to have a spiritual dimension that was seldom recognised or discussed.

Suffering, transformation and renewal is a narrative that we meet elsewhere. In some religious traditions, for example, there is a central story of how an experience of suffering leads to resurrection. In psychological treatment, people often pass through a process that they describe as the death of the old self and the making of a new one.

So in part, this project for me is a way of examining how organ transplantation can lead to the possibility of new life, rather than prolonging or resuscitating an old life.  Listening to their stories, it seems to me that people pass through suffering and emerge transformed.

Who was the work made for?

JW: We hoped that the project would make the life, death and identity issues raised by organ transplantation accessible to a broad audience. More specifically, the idea was to bring the patient voice and experience into the medical museum. The Hunterian has a massive footfall – they predicted nearly 50,000 visitors during our exhibition, so of course we hoped that at least some of those who came to see the collection would engage with the experiences, thoughts and emotions conveyed by our participants.

But we also made the work for the patients themselves, their families, and for others who may be going through similar experiences. When one patient at Harefield heard some of the recordings we put online, they commented that “I wish someone had told me some of this before I had my transplant.” That comment has always stuck with me, and I hope our work is of benefit to patients and their families, who don’t often have the opportunity to learn about the experiences of others.

We’ve also always been keen for medical professionals to engage with our work. The book from our previous Transplant project has been used for training / educational purposes at Harefield and in Johannesburg. See also below…

TW: Everyone.

Who has been your audience for this exhibition?

JW: The president of the RCS, Clare Marx, said at the opening of Transplant and Life that as a clinician she learned something from our work, and one of the surgeons with whom we worked, Bimbi Fernando, wrote to me that “In terms of what I have learned, it is perhaps the depth of the impact that having a transplant has on a patient and their family. In the day to day ward work, we don’t really get a chance to sit down and think about the impact … we pay lip service to it, but do we really think about it deeply? This work certainly allows us to do this!”

So, I hope other clinicians and medical professionals take time to engage with our work and that it has a positive effect on the way they work with patients.

I’m also interested in engaging audiences who may not have experienced much artwork that deals with medical subjects, people who come to it because they’re interested in sound art or installation or photography but perhaps hadn’t thought about what a sound artist might do in a hospital.

TW: From school kids to surgeons.

How will you use this experience and move on to your next body of work?

JW: I’m just starting on a project on noise, sound and sleep in hospitals for which we have received some seed funding from the King’s Cultural Institute. I’m working with a Professor of Nursing from King’s, an engineer from Imperial, a colleague from the University of the Arts London, and a couple of technology companies. The project aims to contribute to the holistic understanding of sound in the hospital environment and the intimate relationship of noise to sleep, rest, treatment and recovery. We hope to raise awareness of the issues around noise amongst nursing, medical and other hospital staff and also to explore creative and practical solutions that will contribute to patient wellbeing and potentially improve recovery times.

TW: I’m already making a new body of work and I’m really enjoying showing it away from the museum and gallery context. So, I guess the experience I use from this is to think very carefully about why and where I want to show my work.

For those interested in gaining an insight into the thoughts and feelings of being in the patient’s chair, their story and that of their friends and family, I would encourage you to go, see this and be inspired. But hurry; the exhibition ends on May 20th! It’s also your last chance to view the Hunterian Museum before it closes for three years for refurbishment.

Long Read: What Does it Mean to Listen, and How Can it Be Learned?

4 Apr, 17 | by amcfarlane

In the first of our “Long Read” series, Anders Juhl Rasmussen interviews Dr Rishi Goyal, Director of Medicine, Literature and Society and Associate Professor of Medicine at Columbia University Medical Centre, and an Attending Physician in the Emergency Department at Columbia University. Goyal is currently a Visiting Professor at the University of Southern Denmark in Odense, and Rasmussen gives some observations from a recent teaching session at Odense University Hospital before interviewing Goyal on the subject of narrative medicine.

Odense University Hospital, January 11, 2017

As visiting scholar in the optional Master’s degree course “Narrative Medicine and Language” Rishi Goyal entered the classroom with physical copies of the shorter texts that he had uploaded before class to the students’ digital BlackBoard. He didn’t use a computer himself, and he asked the students to do the same and sit as close to him as possible. If the tables could have been rearranged in such a way that everyone could face each other, he would have preferred that.

The teaching session opened with introductions during which everyone said their names and their professions, illuminating the different degree programs coming together in the classroom: nurse, midwife, physiotherapist and occupational therapist. On the classroom’s Blackboard, Rishi Goyal wrote the following keywords while explaining the central ideas that inspire his teaching at the interface of medicine and literature at Columbia University:

  • Uncertainty/doubt/ambiguity
  • Human complexity/variability
  • Resilience
  • Creativity
  • Patient perspective/point of view
  • Empathy

The first text discussed was by Audre Lorde. Lorde was suffering from breast cancer, and she addressed the ongoing impact of the illness in The Cancer Journals (1980). The first sections of the text were read aloud by a couple of students and then discussed in detail according to the principles of ‘close reading’ with a focus on style, narration and genre in relation to content.  A core hypothesis of narrative medicine is that the competence of attentive listening to patients’ stories is strengthened through training in close reading.

Rishi Goyal concluded that serious somatic illness affects not only the body, but also the mind. It disrupts a person’s sense of being a unified self as described for example by the sociologist Arthur Frank in The Wounded Storyteller (1995). Serious illness opens a rupture in the continuity of the self, a before-illness self and an after-illness self. Medicine and science work through generalities, but lives are lived as singularities. Medicine’s statistical evidence base cannot be applied to the individual life context without suppressing the singularity of every human being. And yet many patients ask for the certainty seemingly promised by statistics.

Rishi Goyal reminded the students that as human beings we never know exactly how the suffering of another feels. In the terms of the philosopher Emmanuel Levinas, the other person’s subjective perspective is never as knowable as one’s own is. The Other always lies beyond the comprehension of the Self. However, narrative medicine can build bridges between these differences and divisions. Audre Lorde’s insight was that suffering, which is often silenced, must be transformed into language before it can be acted upon or alleviated. After the classroom discussion, Rishi Goyal formulated a writing prompt. The students should write, in 7 minutes, about a moment where they were silenced or others around them were silenced. He told them not to spend too much time on thinking, because the answers weren’t meant to be anything beyond the moment. Finally, four or five of the answers were read aloud and discussed with engagement.

Then a short story by Lucia Berlin from her posthumous collection, A Manual for Cleaning Women (2015), was read aloud. Berlin wrote what might be called ‘self-fiction’ or semi-autobiographical stories that focused on families, working-class lives and the ravages of alcoholism.  In the text, the narrator questions whether to write about her own experiences from the first- or third-person point of view. Illness memoirs are almost always written in first person, but when you apply a third person point of view you create a distance between author and narrator and thereby capture the reader’s interest in otherwise trivial everyday life.

The students discussed the text with remarkable curiosity in the classroom, and Rishi Goyal demonstrated the difference in point of view when he formulated the next writing prompt: The students should write, again for 7 minutes, about themselves in the third person. Several of the students said afterwards that they had never before written about themselves in the third person, and that they were astonished at how the elementary change in point of view opened their eyes on themselves completely. Rishi Goyal mentioned the professor of anthropology and occupational therapist, Cheryl Mattingly, as a scholar who has scrutinized the potential of ‘narrative therapy’.

The third part of the session was a close reading of a few pages from Maggie Nelson’s recent work of ‘autotheory’, The Argonauts (2015). Here, language is interpreted as something that can be destructive or potentially dangerous, because language in a philosophical perspective doesn’t fit precisely with the singular, non-verbal experience. Introducing a completely different take on language than in the previous texts about illness memoir and point of view, Rishi Goyal widened the scope of human experiences and insight.

Even though he didn’t find time to discuss the fourth text, by Sarah Manguso, the students got the sense of a plurality of voices in the texts – and in the classroom. The students reflected on each others’ stories and their own life story through close reading, engaged discussion, and creative writing, and they practiced an anti-hierarchical and relational learning process in preparation for their future practice. Narrative medicine acknowledges, confronts and challenges divisions of race, gender, age and social class, while promoting a more humane medicine based on an approach that prioritizes the understanding of the other’s (patient’s or colleague’s) subjective point of view. Attentive listening – to both words and silences – leads to understanding and to better care.

The Royal Library, Copenhagen, January 12, 2017

Anders Juhl Rasmussen: Let me begin with the basic question; what is ‘narrative medicine’ from your point of view?

Rishi Goyal: Fair enough, I think this is a critical question, and it’s not clear to everybody – even sometimes the practitioners of it. In the most basic sense, I would say that it’s better thought of as a series of practices or a stance. It’s medicine sustained with training in narrative and close reading skills particularly to enable health care practitioners to listen to patients’ stories, witness their suffering, and then be called to act on their behalf.

Narrative medicine is mediated through the three movements of attention, representation and affiliation. Attention refers to all the work that goes into truly listening to a patient’s story of illness; the second movement, representation, is that of writing; and the third and final movement, affiliation, is when health care practitioners and patients form an ethical relationship that is also a call for action. But interestingly, I think, narrative medicine is one aspect of a larger trend that we might call the medical humanities or critical health studies.

Critical health studies engage with medicine and biomedicine as a cultural product; in particular, it brings the political – emphasizing the anti-ideological stance of the humanities – to medicine. Narrative medicine is the anti-hierarchical classroom that is filled with diverse voices. It recognizes disease as a socio-cultural phenomenon as well as a biomedical one and approaches medicine through a critique of ideology, gender and race-based assumptions with an appreciation of the constructive dimensions of language. One simple purpose I find that the medical humanities can provide, is to denaturalize the biomedical sciences without, of course, diminishing our power to effect real change in the physical and mental world of our patients.

AJR: Does narrative medicine fundamentally alter, or rather complement medicine?

RG: I think it’s definitely meant as a complement, and I would even say medicine properly practiced doesn’t need to have the term narrative in it. All medicine should by definition be narrative medicine in the sense that narrative medicine prioritizes the patient’s voice, story and perspective, and attends to the meaning that the patient develops.

AJR: So it’s both a complement, and it does alter medicine?

RG: You could say that it reinvigorates medicine, and that it’s meant to be a counter to the very strong technologizing influences in modern biomedicine in which diagnostic tests like blood tests or CT-scans take away from the centrality of the patients’ narrative. But in my view, again, all medicine is narrative medicine.

AJR: How is narrative medicine related to the recent emphasis on patient-centered care?

RG: There are a few terms that have come up in the last 10-15 years, partly, I think, in relationship to, or as a reaction to what’s called evidence-based medicine: the importance of statistical analysis and particular kinds of knowledge. A version of patient-centred medicine has also been called shared decision-making, which is a strong reaction to the paternalism of the medical field that engenders a direct hierarchy between physician and patient. Patient-centred medicine is meant to re-centre our practice on the patient and their autonomy. I don’t know if it’s the case in Denmark, but in the United States there is a lot of interest in the individual genomics and genetic information and its expression. We’re calling that personalized medicine. And the idea is that we can actually use insights from individual DNA to effect both treatment and diagnostic work in medicine. In a certain interesting way, this personalized medicine has more in common with narrative medicine than it has with an earlier form of biomedicine. If you think about it, narrative medicine focuses on the particular contingent or the local or the unique as does personalized medicine. Generally biomedical sciences are interested in the generalities and categories, whereas narrative medicine and medical humanities privilege particular individual narratives, and in a certain kind of way personalized medicine is more similar to that because it’s treating each patient as an individual, particular locus.

AJR: Your department is different from Rita Charon’s department at Columbia, right? Would you describe the differences between the two departments?

RG: Certainly. Rita Charon’s program is a program in narrative medicine, and it’s groundbreaking without a doubt. It involves teaching at the medical school level as well as offering a Master of Science in Narrative Medicine. Students there are either mid-career health care workers, recent undergraduates, writers who are trying to find meaning in their own work, or academics. I direct an interdisciplinary undergraduate program called “Medicine, Literature, and Society”. We emphasize deep language learning, training in a social science discipline and study in comparative literature. All of the seemingly disparate disciplinary imperatives are united by a focus on health and disease. The course of study is four years, the students take 13 classes, they do reading in at least one foreign language, and we have classes on everything from race and gender to health care ideology, to public health. All of the students are looking at medicine as a cultural product. I find medicine and biomedicine fascinating, and sometimes we get overly caught up in the critique of biomedicine, but in fact organ transplantion or the genetic treatment of tumors are incredible life-changing technologies. I’m fascinated by how great fiction is able to find a powerful form of expression for new changing ways of life. The world today is changed deeply by the fact that gender and sexuality is something we can influence at the biological level. Our entire social structures are changing rapidly. I try to educate students to recognize and understand this and write about it.

AJR: In your answer here I can hear the constructivism in your stance towards medicine…

EG: Yes, but what makes it a little bit different is that I deal with flesh and blood problems every day at work as an emergency room physician. Therefore I can’t be too glib with my constructivism. I recognize without a doubt that some people die, some people live, that medical knowledge has progressed, and it has advanced, and that is a good thing.

AJR: Is there a difference between ‘narrative medicine’ at Columbia and ‘narration in medicine’ as described in your article for the Living Handbook of Narratology? You said yesterday to me that there is an ongoing fight over the term ‘narrative medicine’.

RG: There are probably ways in which narrative medicine is sometimes used throughout the country and the world that possibly is different from what we think it should be. However, I think a healthy debate about the terms is certainly important. The other thing I was suggesting was that this field of medical humanities or the introduction of the humanities into medicine has taken place in many different settings, and people are calling it a lot of different things. Sometimes they call it health humanities, sometimes they call it critical health studies, sometimes just medicine and literature; often people are working with the same set of principles and concepts, but there is a bit of a war about the term.

The principles of narrative medicine

AJR: Now then, let’s continue to the central concepts of narrative medicine. As you would easily recognize, I have structured my questions with inspiration from the recently co-authored book from Columbia, The Principles and Practice of Narrative Medicine (2017). First of all, how would you explain the role of intersubjectivity in narrative medicine?

RG: So, intersubjectivity is definitely a complicated term that has multiple different genealogies in philosophy and in psychology. The way I think about it is, that it refers to a shared worldview or a shared understanding of an event or experience. In its most important sense subjectivity is intersubjectivity. There is no subject without an interlocutor or an other or a witness or a listener. So subjectivity is developed in the cauldron of intersubjectivity.

AJR: Good, then let me be more concrete. How is it possible to fully understand and be a part of the patient’s story of illness? Can a health care professional ever be too emotionally involved? Or how does one balance empathy with professional distance?

RG: These questions definitely come up. I certainly think that we need to have a stance of, what one of my colleagues (Sayantani DasGupta) calls, narrative humility, which is a kind of humility in front of the patient, particularly recognizing that the story of their illness is first and foremost their story. However, to abandon them to their own story would be unacceptable, and it would go against the whole principle of medicine and medical practice. So in a way, we co-author their illness narrative in the process of getting to know them, giving them space to voice their concerns, making them feel comfortable enough to be able to tell their story, to feel that they are being helped and taken care of. In terms of the idea of too much empathy or distance, I’ve always subscribed to the idea that you should treat your patients like you would want your family members to be treated. So, I don’t really feel there is such a thing as too much empathy or too much compassion. Curiosity, which is a term we didn’t bring up in class yesterday, is critical to narrative medicine, you simply have to be interested in your patient. Anatole Broyard, who was a New York Times journalist, died of prostate cancer, but before he died, he wrote a wonderful volume of essays called Intoxicated by My Illness (1992). One of his essays is called “The Patient Examines the Doctor”, and in it he says: I want to be interesting to my doctor, I want to be like a character in a novel, I want him or her to read me and to be enthralled by me. There is no question of distance here. In fact, it’s the opposite, and I think that’s important for medical practice.

AJR: Have you never experienced in your own practice as a doctor that you became too involved in your patients’ sufferings, and that it affected you negatively so you couldn’t help them properly?

RG: I don’t think so. I do think that the patient’s pain, their suffering and their death, influence and affect us, sometimes obviously and consciously, and sometimes unconsciously. Unfortunately, as an emergency physician I encounter death frequently, and it’s hard for me to predict, which patients affect me the most, but I’m certain that I’m taking in a lot of pain. I work and I teach medical residents, and often I will make them write, or I will give them the opportunity to write especially after particularly traumatic or emotional events in the emergency room. It’s incredible how that allows them to make sense of an otherwise senseless event. I think ultimately, death is senseless; there is no reason for it. And as physicians we have to understand and in a certain way accept death with some kind of stoic resignation. Most of us are still in a battle with death.

AJR: Do you use writing yourself to create distance towards traumatizing experiences?

RG: Yes, when I have time. I’m not like the family physician and poet William Carlos Williams who would write in between patients, though it’s incredible. I certainly use writing as a way of – like you said – getting some distance from the immediacy of the event and therefore being able to understand it and make some sense of it or at least put it into a context.

AJR: On an abstract level I could ask, if you understand your own subjectivity through the meeting with your patients in the emergency room?

RG: What I find true is that we as practitioners don’t recognize how much these patients, all of them, affect us. And the act of writing can sometimes release that and help us understand how much emotional baggage we are carrying.

AJR: I understand that learning to be an attentive listener might be the most important feature of narrative medicine. Yesterday, you asked the students, partly rhetorically, the question: what does it mean to listen? Now, I will ask the same question to you.

RG: This is an interesting moment, because it speaks to, if not the impoverishment, then I would say the inadequacy of language to reflect or represent what we mean by true listening. In a certain way, I think we need a language that is more resonant, that has more extension, that has more timbre, to understand these various kinds of listening from the biological hearing all the way to some cognitive activity that involves both the intellect and the emotions. From a practical perspective, listening means being present, it means to some degree creating the space in yourself, to receive the other person’s story, it means being engaged, being curious and being involved. I think it requires quiet, and that is a very complex problem for the emergency room, which is a space usually full of sound and fury, and so finding a way to quiet the external and your own internal environment is critical to listening well.

AJR: You have written the aforementioned article “Narration in Medicine” in the Living Handbook of Narratology (2013). Could you repeat to me; what are the core narrative concepts of narrative medicine?

RG: Sure, I’ve been quite influenced by classical narratology, from Percy Lubbock’s The Craft of Fiction (1921) to structuralist and post-structuralist accounts like Gérard Genette’s Narrative Discourse (1980), which focus on specific features of interest in the novel; mood, order, duration, frequency and voice. I think what narratology does is that it analyzes and gives us concepts for things that would otherwise be unnoticed, that can fly under the radar, we would say, and yet these are key features of all narratives; it’s how we make meaning of our world. As a physician, I must admit that there is a real world, and we can’t pretend there isn’t, but as a thinker and literary scholar I often approach narrative as something that constructs reality. There is not one set of frameworks that I privilege over another, but when I teach I certainly give attention to perspective, point of view, and genre. And genre in particular for medical students is fascinating, because people can recognize how genres create certain kinds of outcomes. In a way, the genre determines the story; in a detective story only certain things are possible and those things are different from what’s possible in a romance. If the patient’s narrative is restricted to certain genres, only certain stories can be told. Breast cancer narratives, for example, are often stories of survival; what happens to all the patients, then, that die of metastatic stage IV breast cancer? Their stories remain lost or unhearable.

AJR: Would it be true to argue that the deep narrative interest is defining for narrative medicine in contrast to medical humanities?

RG: I think, that’s true. Narrative medicine is, as I said, part of a larger concept, which might be the interaction of literary or humanities studies with medicine and culture. One thing about narrative medicine, you have to understand, is that narrative medicine is meant as a technology to train health care practitioners to better listen to and act on behalf of patients.

AJR: So there’s a very close relationship between how to listen to a patient and how the formalist concepts in narratology are applied?

RG: That is properly one of the primary hypotheses in narrative medicine. That the ability to read a book, a poem, or a short story is similar to the act of listening well and by training in the one, reading and writing, you can improve the other, listening and acting.

AJR: A few in the field of medical humanities have formulated a critique of the strong emphasis on narrative, formalist concepts in narrative medicine. What is your answer to this critique?

RG: I don’t have too much of an answer to it. The formalist tendencies of narratologists have been critiqued by post-structuralists and post-modernists. I think it’s more like a recipe than a roadmap.

AJR: You don’t find the aforementioned critique a severe critique of narrative medicine?

RG: Not particularly. The bigger question to me is: does the practice of reading and writing improve your practice as a physician? That’s the question. Personally I think so, but we are certainly in the process of trying to collect more evidence, to design more trials, to convince medical schools and funding bodies to support this kind of work.

AJR: We will return to this later. Now, Rita Charon calls close reading ‘the signature method’ of narrative medicine. Does narrative medicine have its own version of close reading?

RG: No, it’s meant to be similar to the close reading of literary studies. It’s basically textual analysis and interpretation of isolated passages with bracketing of everything outside the text. Close reading is aligned with symptomatic reading, which, I was thinking today, is even more aligned with medicine. The text is symptomatic of something else, and that is similar to the way the physicians encounter the body and the patient. You recognize symptoms, and you’re supposed to ‘read’ the interior meaning or model behind those symptoms. It’s a novel version of exterior versus interior. Close reading techniques are in this sense very productive.

AJR: So close reading of shorter texts as we do it in literary studies, is the best way to teach the principles of narrative medicine?

RG: The same textual practices that the literary scholar would apply to the text, is what the physician or healthcare worker in training will apply to the text. Today we are having a discussion of the value of close reading in humanities. Both surface reading and distant reading have come up as alternatives to close reading in the recent years, but they are difficult to practice, if you are a literary scholar who likes the particular in the text.

AJR: Then I would like to ask, even though you might have given an answer already, what do literary scholars have to offer students of the health sciences?

RG: Everything! The question is, what do we think the humanities are for? On the one hand we think of close reading as a technical skill. To me, it really is more a stance of the humanities that the literary scholar brings to narrative medicine, which is to question the assumptions of medicine that assume a false naturalization or a false nature, I would say. You know, the one thing medicine is not – and practitioners of medicine are not always aware of or able to understand this – is that each act of medicine is only provisional. We are in a moment of time, and perhaps someone thinks that we are heading towards complete knowledge, though I doubt that will happen, I think rather that most medicine is temporary in the sense that something was superseded, and it’s important for people to recognize that this is not the only way or the given way.

AJR: Both you and Rita Charon are educated doctors and literary scholars. Do you think it’s necessary to have a double education to teach close reading in health sciences?

RG: It’s not realistic to expect that people should spend that much time on their training and school. Though, I do have a long-term vision of developing a Ph.D. Program in which students combine medical sciences and humanities. Experience of death and illness is everyone’s lot, unfortunately. From that perspective, the literary scholar has to come as a literary scholar or a humanist. I think narrative medicine is also particularly oriented to literary studies, because it makes the work matter again. In the humanities, we often ask, why are we doing this, what is this for, and it can be frustrating not to have an answer! I know that it’s easier for my students to understand literary studies through the lens of the body and how disease and health affect them.

AJR: So awareness of mortality and disease in literary reading with medical students can possibly contribute to literary studies as such?

RG: Absolutely. I think literary studies needs to understand what it’s for. I don’t think it’s enough to say, well I’m going to publish another scholarly edition of, let’s say, George Eliot’s novel Middlemarch (1872), even though those are valuable and important; I think we need to ask ourselves, in what way does the practice of reading and writing impinge on the world of action and activity in society?

AJR: Does that mean that scholars who teach narrative medicine could help literary students – and scholars – to become better readers?

RG: That would be interesting. I don’t know if I have ever experienced that. Normally it’s the other way around.

AJR: What kind of texts are your favorites, when you teach close reading?

RG: It’s a complex question for me, because one of my personal complications with narrative medicine is the shortness of texts. I am trained in the humanities to read for completeness. If you are going to read a D.H. Lawrence poem, you read all of his poems, and if you read a Victorian novel, you read the whole novel. I’m not sure if a piece of the text is representative of the whole. However that aside, I try to pick texts that have a plurality of voices; by that I mean across time, across gender, across race, across age. I don’t generally focus on it, but it’s there so that the students are exposed to the different voices, because I take very seriously George Eliot’s description of the reason we read. She says, “The greatest benefit we owe the artist, whether painter, poet, or novelist, is the extension of our sympathies.” By choosing these diverse voices, we extend our sympathies even more. In a way, the novel is a kind of virtual reality device for us to be able to enter into another’s mind. So I like writing that has a complex literary language, that is very imagistic, I often like meta-fictional texts, and I also like texts that develop a fully-voiced consciousness.

AJR: Is your insistence on a plurality of voices in the texts related to narrative medicine’s vision of social justice in healthcare?

RG: I think it’s central to any of the approaches in the humanities. One of the goals in narrative medicine is to provide equity in care. Certainly in the United States, we can see that there are health outcomes that are radically different based on race and gender, and those are not biologically mediated, they are culturally mediated. We need to figure out ways to overcome those health disperses.

AJR: You have been in Denmark several times and know about our welfare state. Do you think we have similar divisions here that might be overcome by narrative medicine?

RG: There are two ways, I would think about this. On the one hand, I think there is a gender divide in how people use health care in this country. My sense is that women are more likely to see a physician, and men are less likely, and that is going to have an effect on the health outcome, I think. That difference may be explained by biological reasons, but I think it’s also a matter of cultural differences. On the other hand we live in a world with mass migration, and the Danes have to confront a population of people that are on the outskirts of the margins and don’t have the same access to care. In a socially just world, their economic or citizen status should not affect their health outcomes.

AJR: Right, let me return one last time to the question of reading. In academia, we have ‘close reading’ and ‘creative writing’. Can you imagine a term like ‘creative reading’?

RG: That makes me think of Roland Barthes’s term of the ‘readerly’ text and the ‘writerly’ text. For him the readerly text is the classic 19th-century novel that has a strong central focus and voice. The writerly text, which Barthes is more excited about, is the post-modern text that is co-created by the reader and the writer. In a way, that writerly text concept resonates very well with narrative medicine. The patients’ narratives are co-authored between the patient and the physician. There might be some way to think of Barthes’s writerly text and co-created narratives – and that might be a kind of creative reading.

AJR: Why then is creative writing, and creativity as such, so important for medical – and human – understanding?

RG: There is something that happens in the act of representation, in the act of writing, that I think is central to why narrative medicine has an effect. And I’m not sure if I can give you the right answer to this. When I was teaching yesterday, what the students found fascinating was writing about themselves in the third person. They suggested that by doing that they were able to confront complex emotional situations in a rational way. On the one hand the writing act allows that to happen, but it seems to be much more than that. Creativity is at the centre of so many human activities, and that freedom to be creative is important. In the sciences and in medicine particularly, there isn’t enough space for that. Creative writing is a moment of freedom that allows these young students to say something indirect. It’s sometimes hard to say something in the face of a person, whereas looking at it from a different degree or through a fictional lens, allows people to confront their emotional responses better.

AJR: Would you agree if I said that the question of creativity in itself is a symptom of a civilized and technologized world that has lost the immediate contact with creativity as something elementary in our existence as human beings?

RG: That is a very profound thought. Maybe you are right. There is a way in which we all are overly sedimented by civilization. Sigmund Freud would say that civilization only happened because we repressed a certain set of primary impulses and ideas – and in a way creativity may have been repressed to allow us to be civilized.

AJR: You have two young children, and I have a little child. To children the creative impulse wouldn’t be anything to question. Why is it different for us?

RG: The emphasis on making is very important to me. I’m working with a sociologist, and we are thinking about designing classes in which the students make things. That’s all I can say about it so far, because I don’t know what that means, but I think the act of reading and writing, but then also making something, whether it’s a design or an object, simply working with your hands, I think these are critical acts of teaching and learning that have been removed from most educational practices.

The practice of narrative medicine

AJR: Now let’s turn our attention to the practical aspects of narrative medicine. Do you always teach narrative medicine in small classrooms?

RG: Almost always. We have different formats so we teach medical students, we teach nursing students, we teach public health students, we teach mid-career physicians, nurses and occupational therapists, and we teach writers with no medical training. One of the fascinating things about narrative medicine is that there are so many different groups of students, and they bring totally different experiences to the table. Doing sessions is almost always in small groups, because you have to be able to share your reading, to be intimate and open, otherwise the process doesn’t work. Sometimes we will have lectures for hundreds of people, but the lectures are only the supplement. The work happens in small groups with the texts, the reading and the writing.

AJR: Is that a difference between teaching medicine and narrative medicine?

RG: No, at least in United States there has been a move towards a mixture of teaching in small settings and large groups. Medical schools are consequently supplementing their large style formats with small group case analysis or bedside teaching.

AJR: So teaching students narrative medicine in a large auditorium, as we might do here in Odense in the future, can only be a supplement to the small format?

RG: I think so. I don’t think the point is to teach the theory or principles of narrative medicine, it really is a doing kind of activity. It’s not about knowing it per se.

AJR: Could you describe the ideal relational process of teaching narrative medicine?

RG: One of the reasons why narrative medicine focuses on shorter or short texts is because of the reality of everyday medical education and medical life where people feel very pressed by time. Ideally, texts are read beforehand and thought about before you even arrive. However, that’s not always practical so often we all read in class, usually at least twice, if the text is short enough, once to yourself silently and once aloud in a group. I like to hear students read. You can hear their different inflexions; they get engaged differently when they read. I encourage them to read with a pencil and to mark things. The question of what to mark in the text is open and should be open. You can ask them to circle words that they find interesting, confusing, that might have layered meanings, or structures within the text, some sort of pattern they might recognize. Reading with a pencil, I think, is particularly valuable.

AJR: I have noticed yesterday, that you dislike laptops among the students in your teaching, and you don’t use a computer yourself. Why?

RG: The only reason I dislike the laptop is that we have so many screens in everyday life; we should create space in our lives without screens, I think. Besides that, the screen can be distracting because there is likely to be a window or a browser open with e-mail, and the distractions are a potential problem.

AJR: Could you say more about the writing prompts? My own experience from teaching narrative medicine is that sometimes they work and sometimes they don’t.

RG: That’s true. It’s a kind of trial and error. You have to see if it’s going to create the right effect in the student. But the writing prompt that works almost always works. It’s not that they work in some contexts. And what is a good writing prompt? I think it’s one that’s not too specific, that allows for open endedness, and that allows the students to immediately reflect. A writing prompt encourages the student to not just say something, but also to reflect on how it’s said. We want the students to write “in the shadow of the text”, as we say in narrative medicine. So the text that they read should resonate with them. The text and the prompt should then encourage the student to make use of the text. It’s not a critical exegesis of that text. That is why I like that phrase, writing in the shadow of the text.

AJR: Is it also a matter of being aware of how close form and content are related to each other?

RG: Yes, and I think that is why the focus on narratology’s formalism has been present in narrative medicine as opposed to just thematic interests. There is something in these formal structures and the content-form relationship that are cognitively very crucial to understanding.

AJR: What did you do during the writing prompts that you gave the students yesterday?

RG: I always write myself too for a number of reasons. One, it’s an opportunity I get to leave the classroom and escape into my own writing. Two, it suggests that I’m not above the activity. You get a lot more comfort from the students when they see you’re participating in it as well. And especially when it comes to sharing your work, if you are going to take that leap, the students will follow.

AJR: Could it create problems that you on the one hand practice together with the students and on the other hand have to grade their papers?

RG: At the end of the day you are their teacher, and I think they understand that. Medical students are often processing very complicated emotions so they have to feel comfortable to do this work. It’s not only an intellectual activity; it’s also emotional.

AJR: Is it important that the text you choose treats illness? Or do you agree with Rita Charon that it sometimes can disturb the focus on textual form, if the text treats illness?

RG: I understand that argument, but I don’t subscribe to it. I think, especially when you deal with science students, you have to gain their trust and their interest. They are smart students, and they are interested in the sciences, so if you are trying to bring in the humanities – for me – it works much better to bring in textual themes that look familiar to them. Still, it’s got to be great writing. But I think having a little bit of something that feels like medicine is effective and more powerful.

AJR: Do you think there is a significant difference between medical students and the students from different degree programs (sick nurse, midwife, physiotherapist, occupational therapist) you have met yesterday?

RG: I wouldn’t say a significant difference, but I would say that medical students tend to be a little bit more dismissive initially. As I mentioned yesterday, social work students and nursing students are already doing this kind of work without recognizing it, so they take to it very easily. I prefer we do this a little bit, to have students from different schools in one group together. We have a project about collaboration, because it’s an important aspect of medical practice, and it’s an important aspect of all work life. What’s interesting is that there isn’t a lot of focus on it in any kind of under-graduate or graduate training. Everybody gets a transcript, everybody gets a grade, and yet in most professions they are going to work with other people. We don’t know how to train people to do that yet. One of the goals of the narrative medicine workshops is to teach people like social workers, sociologists, and medical students to collaborate.

AJR: That’s very interesting, I think. Do you have something to say about how narrative medicine can be applied in the rehabilitation of patients with serious illness?

RG: Illness memoirs are a perfect example. The memoir genre or self-writing is really a growing phenomenon throughout the world, because people are finding in writing that something happens, and that they can stitch their identity back together again. We have a whole slew of wonderful illness narratives. In The Two Kinds of Decay (2008) by Sarah Manguso, which we were going to read yesterday but did not have time for, there is no doubt that her writing is helping her manage her own illness. She is a professional writer, but I think also non-professional writers can gain something through writing. One of the truths about illness is that it divides you from yourself, it separates you from the person you thought you were or were going to be. The work of healing involves rebuilding that relation to yourself, and the act of writing can help you. Cheryl Mattingly writes about this in a book called Healing Dramas and Clinical Plots (1998). She is an occupational therapist and anthropologist as well.

AJR: Would you go as far as using the concept of therapeutic potential in creative writing?

RG: I think so. Again, I don’t do a lot of that personally. I don’t make my patients write, and it’s partly because of the structure of my medical practice, though I have been talking to some in my residency about trying to do a project about this. One thing I brought up yesterday was that we are finding that for patients who come to the hospital, whether or not they end up with a serious or life threatening disease, just the act of being evaluated for a serious disease is creating anxiety. Many patients are having higher rates of depression and PTSD. The question becomes: did the potential illness cause the depression, or did the depression cause the potential illness?

AJR: But you simply need to develop more research in this field?

RG: Yes, a lot more.

Developing the field in the future

AJR: I would like to end the interview by posing some further questions about the future of narrative medicine. Are you familiar with the recent qualitative research study (2014) of the medical students’ responses to their narrative medicine seminars at Columbia?

RG: I think, the study reported that the students were developing certain kind of features, ‘habits of mind’ even, like creativity, self-reflection; they are very satisfied with narrative medicine. I taught narrative medicine to medical students weekly for a while, and that was a fundamentally interesting experience because there’s resistance to it from some students initially but I find that most students, if they overcome that resistance, find it to be an incredibly rewarding process.

AJR: But it’s not enough to have qualitative research studies, you need, as we discussed earlier, some kind of evidence-based evaluation of your programs?

RG: That is, as I have said, the next step for us. In the humanities in general there isn’t a lot of data collected, and they probably don’t need it. It’s self evident that it’s a valuable activity. For medical school deans in the sciences they want evidence in their own terms, and we must think about what kind of outcomes matters for the students. What do we think is important, and in what way does narrative medicine affect those outcomes.

AJR: Do you think it’s possible to prove changes in physicians’ practice in this way?

RG: Absolutely. Even though I don’t know what that study would look like. There are these studies that I’m not particularly fond of like the PET scans of your brain when you read an uncomplicated text compared to a complicated text. That kind of evidence doesn’t convince me very much. Asking questions around language and identity from a neuroscience lens can provide evidence in the future. I think we are going to see more studies of cognition, and that may be one direction. But those scans of the brain that I have seen are not sophisticated enough.

AJR: Do you know about Rita Felski’s monograph Uses of Literature (2008)? She is a guest professor at University of Southern Denmark in Odense leading the project Uses of Literature: The Social Dimensions of Literature from 2016 to 2021. How, in your opinion, could narrative medicine be seen as a ‘use of literature’ that has social dimensions?

RG: First of all, it’s very exciting that she is spending time here and helping to develop these programs, and thinking about Rita Felski’s work in relation to narrative medicine is a very rich idea. And I do know her work! For me, the Uses of Literature reinvigorated or, to use a term which I think Felski also uses, it re-enchanted the world of literature with pleasure, beauty and interest. I think she called her book an ‘un-manifesto’, and she reminds us of the importance of the experiential states and of phenomenology, and I think without a doubt those are central concepts to narrative medicine, to the lived experience and to the practitioners. The theory of narrative medicine is, as I have already explained, very much in the service of practice. Both narrative medicine and Uses of Literature want to ground themselves in everyday practice and find a central role for the concept of recognition. It’s possible to look more at Felski’s idea of recognition and see if narrative medicine can gain something from that.

AJR: And maybe vice versa?

RG: I think so.

AJR: Narrative medicine involves studying literature and art (paintings, music, etc.). Could narrative medicine embrace attention to language and linguistic studies? In Denmark literary studies and linguistics are closely related.

RG: The term narrative medicine is an elastic term. As I said in the beginning of this interview, it’s rather a stance or a set of positions. We read poems, we read drama and engage with visual imagery; it would be pedantic to focus too hard on the term. It’s much more a question of the use of arts in general. Oscar Wilde famously defined art as “something that is quite useless”. A lot of us grew up with that idea, and one of the pleasures of art is that it’s non-utilitarian. But for narrative medicine it’s a different question, because it really is about trying to think of the value of everyday life. Once upon a time art had a religious function. I think we, over the years, lost some of its storytelling function, and narrative medicine tries to bring back some of these older values of literature.

AJR: Would you like to elaborate this profound thought? I understand that you are interested in historicizing medicine.

RG: I take Frederic Jameson phrase very seriously; he says “always historicize”. For Jameson, reading is an act of recovering the relationship between freedom and necessity. There is a dialectic of history, and all literary texts are somehow representative of that conflict. To understand any text, you have to understand its historical context. One of the complicated issues around medicine is that we name diseases after people, and nobody remembers who those people were except the historians. In humanities, history is always a part of the activity, whereas in medicine, history is often erased, and I think that makes it seem like the present is always inevitable. That is something I push back a little bit. If something seems too natural, you lose the importance of doubt and uncertainty.

AJR: Is your point of view influenced by Michel Foucault’s idea of genealogies?

RG: It could be. Illnesses have a history; they are not like species. We don’t look into a garden to find them there. To some extension, we construct illness. It represents reality, but illness is not naturally given. We could also begin to talk about biopolitics and biopower.

AJR: Maybe also Foucault’s concept of ‘episteme’ could be useful, if you want to relativize the medical knowledge of the present?

RG: The borders of health and illness, like the normal and the pathological, are fragile – new illness emerge and old illnesses disappear, possibly as a result of epistemic shifts. Sometimes an illness is a product of the pharmaceutical industry. The pharmaceutical industry makes a medicine and then decides that they now need a condition to treat. Unfortunately, it can go that way too. We need people to unravel this as well.

AJR: Close to the end, what do you think is the future of narrative medicine?

RG: The picture of narrative medicine is bright. It’s exciting that we from Columbia can practice and participate in the development of narrative medicine in Odense. It’s something that we can learn from back in New York, and it’s important to be understood and uncovered in multiple places. The global trend is very exciting.

AJR: If you find the time to write a monograph about narrative medicine, and I hope you will soon, what will it focus on?

RG: I exist wholly in two different worlds. On the one hand I practice emergency medicine, and I’m a doctor. On the other hand I am a reader and a literary scholar. When I’m doing one or the other, I try to really be in the method of each discipline. For me, I’m fascinated by the contemporary novel and a current cultural trend that values the neurological over the mental or the psychiatric. I am working on a book about the neurological turn.

 

 

References

Broyard, Anatole. Intoxicated by My Illness: And Other Writings on Life and Death. Ed.

Alexandra Broyard. Clarkson Potter. New York. 1992.

Berlin, Lucia. A Manual for Cleaning Women. Selected Stories. Farrar, Straus and Giroux. New

York. 2015.

Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. Oxford University Press.

Oxford/New York. 2006.

Charon, Rita et al. The Principle and Practices of Narrative Medicine. Oxford University Press.

Oxford/New York. 2017.

Comer Kidd, David and Emanuele Castano. “Reading Literary Fiction Improves Theory of

Mind”. Science, 342, 2013, p. 377-380.

Felski, Rita. Uses of Literature. Blackwell Publishing. Oxford/Malden. 2008.

Goyal, Rishi. ” Narration in Medicine” in Peter Hühn et al. (eds.) The Living Handbook of

   Narratology. Hamburg University. Hamburg. 2013.

Lorde, Audre. The Cancer Journals (special edition). Aunt Lute Books. San Francisco. 1980.

Manguso, Sarah. The Two Kinds of Decay. Farrar, Straus and Giroux. New York. 2008.

Mattingly, Cheryl. Healing Dramas and Clinical Plots: The Narrative Structure of Experience.

Cambridge University Press. Cambridge. 1998.

Miller, Eliza et al. “Sounding Narrative Medicine: Studying Student’s Professional Identity

Development at Columbia University College of Physicians and Surgeons”. Academic

   Medicine, 89, 2014, p. 335-342.

Nelson, Maggie. The Argonauts. Graywolf Press. Minneapolis. 2015.

 

 

Anders Juhl Rasmussen has a PhD in Danish literature and is currently a postdoctoral research fellow in narrative medicine at University of Southern Denmark in Odense. He is also the coordinator of The Nordic Network for Narratives in Medicine.

Book Review – Ill Composed: Sickness, Gender, and Belief in Early Modern England

28 Mar, 17 | by amcfarlane

Ill Composed: Sickness, Gender, and Belief in Early Modern England by Olivia Weisser, New Haven: Yale University Press, 2015, 296 pages, £60.

Reviewed by Sarah O’Dell, Azusa Pacific University, Azusa, CA 91702, sodell10@apu.edu

In this well-researched and compelling work, Olivia Weisser addresses the relative paucity of scholarship on early modern gender and illness to argue that early modern experiences of illness were mediated by factors such as gender, religious belief, occupation, economic status, and contemporary writing practices. To analyse these influences, Weisser reclaims the perspectives of early modern patients, ultimately demonstrating how self-expression defined medical care, as well as highlighting the performative aspects of their ailments. Her study relies on a diverse array of sources spanning from 1630 to 1730: diaries, letters, account books, medical literature, devotional literature, practitioner case notes, and petitions. While the fifty-two historical narratives (penned by thirty men and twenty-two women) are representative of a wealthy and literate minority, they present a diversity of age, political affiliation, and religious membership. Weisser further expands her source material by analysing petitions submitted by poverty-stricken individuals during their times of illness.

Through these texts, Weisser reveals the ways in which emotion, conventions of suffering, and articulations of pain influenced sufferers’ perspectives of their health. Crucially, Weisser contends that seventeenth-century English men and women perceived illness in gendered ways: while women often attributed illness and recovery to positive or negative affective relations, men demonstrated a tendency to privilege their own experiences and observations over the opinions of others. Ill Composed therefore addresses several imbalances in previous scholarship regarding illness in the seventeenth century. Although prior studies of early modern patients in England have focused almost exclusively on the extant diaries of Puritans, Weisser draws on the writings of Anglicans, Quakers, and Catholics to present a more theologically balanced landscape of illness. Weisser also deviates from previous scholarship by asserting the role of the emotions in illness – both pathogenic and curative – and abandoning typical discussions of pain management to instead consider how pain was expressed.  Following Joan Scott, Weisser does not consider these first-hand accounts to be unmediated reflections of experience, instead analysing the role of writing in constructing experiences of illness. By scrutinizing the normative writing practices of the period, she illuminates how gender mediated the space between lived experience and documentation.

Weisser begins her study with a chapter unpacking patients’ understanding of their bodies from a (gendered) humoral framework, and the remaining chapters trace the progression of illness. “Learning How to Be Ill” treats the scripts employed by patients to make sense of their infirmities, specifically those derived from observing the suffering of others, interpreting their own bodily functions, and engaging devotional literature. Weisser demonstrates that religious writings such as the Confessions provided templates for considering the physical and moral effects of temptation; Augustine’s story of the stolen pears transformed early modern experiences of fruit-related sickness into opportunities for religious reflection. As the book progresses, the gendered aspects of early modern illness become increasingly clear. In “Emotional Causes of Illness,” Weisser argues that women were likely to causally link their ill health to negative emotions. For instance, Alice Thornton reported ill health immediately following the death of her siblings, and on the night of her husband’s death Mary Rich wrote, “this night with griefe I fond my self uery ill.” Sickness could not only arise as a response to grief, but also in sympathy with the sufferings of a loved one or as a deleterious effect of gossip. In contrast, relatively few men reported a direct relationship between their passions and the state of their health. Samuel Pepys, when consumed with jealousy for the affections of his wife, described the toll on his health in terms of “troubled” sleep and mind, refusing a direct link between emotion and illness. As Weisser argues, men were more inclined to focus on the physical processes underlying their bodily states, or present their ill health alongside professional or financial concerns.

“Suffering on the Sickbed” examines the behavioural expectations of “the sick role” as well as the effects of visitors; early modern illness was enacted in a community framework, rendering visits to the sick both a social responsibility and religious exercise. “Perceptions of Pain” discusses how patients evaluated their pain, as well as the ways in which religious narratives of suffering – notably, those of Catholic martyrs and Christ himself – transformed the experiences of the pious. Men and women not only used martyrdom as a metaphor for their pain, but also utilized the discourse of martyrdom in mimetic ways. For example, the tortuous image of the rack was both utilized as a metaphor to highlight the spiritual significance of suffering and employed to articulate severe pain. Importantly, Weisser notes the challenge pain posed for normative gendered behaviour: women’s assertive expressions of pain often defied the normative feminine qualities of patience and submission; men characterized the severity of their discomfort by recording their inability to meet expected masculine roles of economic and occupational import. The final chapter, by discussing the petitions of those afflicted by both physical and financial debility, examines the socio-economic impact of illness. Weisser identifies several key differences of these illness narratives, namely an increased emphasis on misfortune, physically debilitating disorders, and the economic toll of illness. Throughout the book, Weisser discusses afflictions that are not sex-specific; by not stressing the bodily explanations of one sex over the other, the gendered aspects of illness are clearly rendered.

Ill Composed presents Weisser’s contribution to three broader fields: historical considerations of the patient, women’s and gender history, and studies of constructions of the self. Ray Porter, Dorothy Porter, Lucinda Beier and others have previously investigated the early modern patients’ participation in the medical encounter, especially in light of the decline of patient authority experienced in the 19th century. Weisser expands this work by demonstrating the influence of both gender and religion on early modern utterances of illness. While Barbara Duden has previously established “the body” as a historical subject, her attention remains on only female patients; Weisser addresses this gap by noting the gendered similarities and differences in seventeenth-century expressions of illness. Similarly, while Laura Gowing and Mary Fissell have explored early modern conceptions of the body, Weisser offers a novel approach by utilizing illness to explore the relationship between culture and embodied experience. This work advances these fields by depicting the early modern sick body as locus of self-expression; the constructive potential of this rhetorical space is heightened by the (religious) anxiety and reflection surrounding illness. Weisser demonstrates that these self-constructions occurred in ways that both affirmed and defied normative gendered behaviour. Overall, Ill Composed presents a revelatory study of the body as a product of its cultural and historical moment, providing crucial insight into the historical experience of illness and inviting scrutiny of the practices surrounding illness today.

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