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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.

Romanticizing Tubercolosis

21 Mar, 17 | by amcfarlane

Radu Jude (Director of ‘Scarred hearts’) and the Screening Room Editor of Medical Humanities, Khalid Ali, met at the London Film Festival, October 2016.

Our screening editor, Dr Khalid Ali (Khalid.ali@bsuh.nhs.uk), here writes about the importance of Romanian director Radu Jude’s new film Scarred Hearts (Romania, 2016) and interviews him at the London Film Festival in the podcast included below.

Each year on the 24th of March, several organizations around the world celebrate ‘International Tuberculosis Day’. It serves as a timely reminder that TB still remains an international epidemic claiming the lives of an estimated 1.4 million people, making TB one of the top 10 fatal diseases, and the emergence of 480,000 multidrug-resistant TB cases annually according to the Global Health Observatory data report- 2015. Before ‘Streptomycin’ was discovered as an effective anti-tuberculous drug in 1944, TB was a devastating disease with an inevitable death sentence. Radu Jude, award winning Romanian film director, revisits the TB epidemic in the early twentieth century in Scarred Hearts. The film is based on the life of Max Blecher (1909-1938), a Romanian writer who wrote the book Inimi Cicatrizate based on his own affliction with TB.

Scarred Hearts is a close examination of the life of Emanuel (Lucian Tedor), a Jewish Romanian young man in his twenties from a privileged background in the turbulent times of WWII, who falls ill with Pott’s disease (TB of the spine). Emanuel is admitted to a sanatorium, were he spends years bed-ridden, contemplating life, love, and illness. While meditating and writing his books and essays, Emanuel meets and befriends fellow patients and nurses. His encounters with the sanatorium’s resident doctor are short and traumatic; one such encounter happens when the doctor evacuates an abscess from his back with little analgesia, if any. The days go by slowly in his confined solitary world, while some nights are livened by ‘carnal activities’ with a young, female nurse, and another patient affected by TB. With the war exploding outside, boredom and melancholy set in in the dark corners of the sanatorium. The budding companionship and friendly exchanges with other inpatients over smoking, drinking alcohol, and playing cards, make the sanatorium a safe refuge for creativity in writing literature and composing essays, human interactions, friendships, and love. Some patients even decide to stay in the hospital indefinitely, and take up voluntary roles caring for other patients, showing altruism and human sacrifice. Self-management in chronic conditions is a relatively new concept in medical literature; however, Emanuel in 1930s Romania embodied the essence of self-management in ‘surviving a bed-bound existence with resilience and hope’. The socio-economic dimension of TB in today’s world plays an important factor in making it a universal public health and social challenge. Co-ordinated health and social interventions are as much needed today as they were in the mid 1930s.

Throughout history, TB has been given several names:  consumption disease, The White plague (a seventeenth-century TB epidemic in Europe and North America), Phthisis (a term which appeared in Greek literature around 460 BC, and was used by Hippocrates), Scrofula (TB of the lymph glands), and Pott’s disease. It was also referred to as the ‘Romantic disease’ as a lot of its sufferers were young adults at the time of the Romantic movement in European art, literature, and philosophy. Throughout history several notable literary figures suffered from TB; Jane Austen, Emily Bronte, John Keats, Anton Chekov, Franz Kafka, Khalil Gibran, and George Orwell are some examples. However, Max Blecher stands out in documenting his journey with TB in Inimi Cicatrizate.

It is interesting to note that Max Blecher was studying medicine in Paris when he had spinal TB. He was forced to abandon studying medicine, and become institutionalised in hospital settings until his untimely death at the age of 28. As a medical student and a writer, he had several qualities which are essential in both vocations; keen observation, building a rapport with those around him by actively listening to them, and transforming all those interactions and experience into a coherent form of story-telling. It goes without question that ‘empathy’ was a driving force in his analysis of the physical and emotional facets of illness. He was indeed bed-bound, but his eyes and ears were wide-open to the suffering and misery around him. Documenting his thoughts and philosophy in writing might have helped him stay sane, hanging on to some form of well-being in the bleakest of circumstances. Mother Theresa once said ‘The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted’. Reminding ourselves on Friday 24th March 2017 of the global impact of TB, its sufferers are no longer alone or unwanted.

Listen to the interview with Radu Jude, director of Scarred Hearts:

New Blog Curator and Reviews Editor

14 Mar, 17 | by amcfarlane

I am Anna McFarlane, the new blog curator and reviews editor here at the BMJ Medical Humanities blog, and I wanted to introduce myself to regular readers – and first time visitors. I’m delighted to be taking on this post and would like to thank my predecessor, Columba Quigley, who has been answering all my questions and doing everything she can to make this transition as smooth as possible. Thank you also to editor-in-chief Deborah Bowman and everyone else on the editorial board for all your help so far.

My interest in the medical humanities has been growing exponentially over the last few years. While my thesis dealt with a relevant subject – the representation of psychological discourses in science fiction – it was my post as the research assistant on the Wellcome Trust-funded Science Fiction and the Medical Humanities project at the University of Glasgow that really urged me to develop a relationship with the field as a whole. As part of that project, myself and the principal investigator, Dr Gavin Miller, edited a special issue of BMJ Medical Humanities and took the opportunity to dive into a series of fascinating enquiries, covering speculative design, bioethics, and disability studies among many others. It is now my pleasure to take on a more permanent role working with the journal.

To that end, I’m looking forward to continuing and developing the work of this blog over the next few months, so please get in touch if you’d like to provide us with:

  • Book reviews: If you need a review copy, email me and I’ll see what I can do.
  • Guest blog posts: If you want to explore a relevant medical humanities topic in blog-form, perhaps one raised in the pages of the journal, let me know.
  • Other reviews and innovative interventions: reviews on exhibitions, television shows, and other media will be considered, as well as any novel ideas for developing conversations in the medical humanities that you might have.

You can get in touch with me to discuss any of these options, or just to chat about all things related to the medical humanities, on Twitter (@mariettarosetta), or by emailing me at anna.mcfarlane[at]glasgow.ac.uk. If you haven’t read the journal before, you can find the current issue here. I’m very much looking forward to working with all of you as we explore this developing field together.

Book Review: The Mystery of Being Human

10 Mar, 17 | by cquigley

 

Raymond Tallis, The Mystery of Being Human: God, Freedom and the NHS. Notting Hill Editions, 2016.

 

Reviewed by Dr Sara Booth

 

This collection of essays – lucid, varied, compelling – is by retired academic geriatrician and neuroscientist Professor Raymond Tallis. A man who may truly be called a polymath, he is not the sort to skulk in a library and never publish anything until it is so perfectly honed that all the life is drained out of his thoughts. Tallis has written and published widely on subjects as diverse as post-structuralism (a critique), artificial intelligence, and the importance of philosophy (defending it against attacks from Stephen Hawking), including a book on Parmenides, a pre-socratic philosopher of whose written work only minute fragments survive.

There are six essays in this beautifully bound edition which, complete with page marker and linen cover, is a pleasure to handle as well as to read. The  subjects of this book, true to form, range widely, thus fulfilling the promise of its subtitle ‘God, Freedom and the NHS.’

In the preface, Tallis defends the brevity and compression of the essay, a form rare in the modern written media, except perhaps the London Review of Books or The New Yorker. He describes the essay as ‘a mind-portable form’, implying that it fits well with the interrupted nature of most people’s attention to their reading. Tallis believes that the essay is the best vehicle to express his well established humanism, self-defined as ‘secular humanism’, and his preferred philosophical stance on life, death and humanity since his teenage years.

Tallis defines this book as mainly a philosophical treatise, whilst he accepts, as I see it, that many will find his essay on the privatisation of the health service political. It is a most heartfelt essay, concerned with the tragic dismantling of the NHS by a ‘cynically corrupt political class.’ The book itself is dedicated to members of Stockport NHS Watch, with whom Tallis was moved to leave the library and to protest in the streets, and experience that he found difficult yet exhilarating.

In Lord Howe’s Wicked Dream, also the longest essay in the book, Tallis excoriates successive Secretaries of State for Health, saving his strongest contempt for Jeremy Hunt. In the short time since this book was published, there have been the strongest signals yet that the service is crumbling away under strains (ageing population with multi-morbidities and little attention to preventative health maintenance) that have been obvious albeit ignored for decades, and those heaped on the NHS by whatever the political equivalent of iatrogenic illness is: Hunt, for example, ramping up individuals’ expectations of what they should demand of the health service, demeaning those who work for it, reducing funding in real terms, and bringing in private companies to profit from the easy work. The Health Service is the most obvious example of the widening gulf between political rhetoric and lived reality, and illustrates the crude attempts to bring critics of (successive) government’s health policy into disrepute. Tallis’s essay is a powerful cri de coeur marred only, in my eyes, by the use of the term ‘swivel-eyed’ which always conjures up the clever, arrogant sixth former to me. It is now a hackneyed phrase which should be jettisoned. Otherwise, all too plainly, what Tallis has predicted is clearly coming to pass and his systematic destruction of the ‘alternative facts’ peddled by the government is cogent and impressive. It is wonderful that so many people give so many examples of still excellent, humane care in spite of the strains. Mid-Staffs remains a terrible example of what can happen when the wrong incentives narrow targets and ‘punishments’ are applied.

The current mayhem in the NHS and the political reactions on all sides impede any chance of looking constructively at how a ‘free at the point of service’ can be maintained. It is clear that we need also to convince people of the value and impact of looking after themselves by behaving differently and valuing what health they have, as well as looking at taxation. We also need someone in charge at the Department of Health who is interested enough in the Health service, and broad-minded enough to listen,  to understand what the work entails. Jeremy Hunt’s complete ignorance of what the reality of junior doctors’ lives are like, as well as his readiness to misuse statistics, has caused a huge mound of distrust to build between the Department of Health and the clinicians who work within the NHS.

Other essays in the book are more clearly philosophical. Tallis alerts us in the preface that a ‘philosophical novice’ might find his essays ‘demanding’. (Reader, I admit that I did). He has a deep, long-standing interest in time and the need to  ‘engage with physics and…rescue time from its jaws’. He feels that time is far too complicated to be left to those who reduce it to a set of numbers.

Unlike Professor Dawkins, Professor Tallis wants to engage, rather than belittle, those with religious or spiritual beliefs. In a wonderful essay, God and Eternity for Infidels, he concludes that that ‘the challenge of humanism is to retain a numinous sensibility without the continuing support of the idea of God or churches.’ In an equally enjoyable and thoughtful essay sparked by an everyday event On Being Thanked by a Paper Bag, Tallis considers the complexity of human consciousness.

In summary, this is a book that will provoke thought and new ideas in the reader – or at the very least a new way of seeing and thinking about many aspects of our lives. Reading it, you will also probably want to read more of what this thoughtful and humane thinker has to say.

Book Review – A Body of Work: An Anthology of Poetry and Medicine

9 Mar, 17 | by cquigley

Corinna Wagner and Andy Brown (Eds.) A Body of Work. An Anthology of Poetry and Medicine. London, Bloomsbury, 2016, 532 pages

Jack Coulehan, MD, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY 11794 USA

At first glance medicine and poetry seem like strange bedfellows. Yet, consider the fact that medicine has strong roots  in the world of art and symbols, and poetry can often be, as the editors of A Body of Work put it, “the deep music of bodies in pain.”  Because of its brevity and immediacy, poetry occupies a special place in the medical humanities movement, which seeks to explore issues of illness, suffering, and healing through the lenses of literature, history, philosophy, cultural studies, visual arts, and other humanities. In their introduction to A Body of Work, editors Corinna Wagner and Andy Brown ask rhetorically, “Poetry: What Is It Good For?” This brings to mind the famous lines from William Carlos Williams’ late poem “To a greeny asphodel,” “It is difficult to get the news from poems, / yet men die every day / for want of what is found there.”1 Perhaps poetry is like a vitamin, required for human flourishing, if not survival.

Several anthologies of poems about illness, disability, medicine, and healing have appeared in recent years. In addition, anthologies of poems written by doctors, nurses, and other clinicians are available. Does A Body of Work contribute anything  substantially new to this genre? The answer is a resounding Yes. The book’s subtitle, “An Anthology of Poetry and Medicine,” could be loosely applied to the earlier collections, but A Body of Work is the first to take the conjunction “and” quite seriously: not just an anthology of poems with the relevant subject matter, or poems written by medical practitioners, but rather an exploration of the relationship between poems and medical beliefs at the time of their writing.

Wagner and Brown situate poems in historical and cultural context by including excerpts from medical writings of the same period. These allow the reader to understand, at least to some extent, the mindset of the poet and his or her original audience.  Because in each major section, poems and medical texts are arranged chronologically, the reader may also observe how medical understanding of a poem’s subject matter evolved over several centuries.  This contextual approach creates a dialog between poetic and medical expression.

The Body of Work is divided into eight topical chapters: Body as Machine; Nerves, Mind and Brain; Consuming; Illness, Disease and Disability; Treatment; Hospitals, Practitioners and Professionals; Sex, Evolution, Genetics and Reproduction; and Aging and Dying. Within each section, poems are arranged chronologically, as are the excerpts from medical writings that follow. Consider the first chapter, which explores the metaphor of the body as machine. One of the first selections is by an anonymous 19th century poet who wrote:

Observe the wonderful machine,

View its connection with each part,

Thus furnish’d by the hand unseen,

How far surpassing human art! (p. 29)

 

In later poems this Enlightenment metaphor is variously affirmed, transformed, critiqued, and denied. For example, in the mid 19th century, Walt Whitman firmly rejected the mechanical man in “I Sing the Body Electric”: “And if the body were not the Soul, what is the Soul?” and “If anything is sacred, the human body is sacred…” (p. 33) In the early 20th century, D. H. Lawrence extolled the self-healing powers of body and soul, “I am not a mechanism, an assembly of various sections…” ( p.38) By the 21s century, poets were writing  about their bodies with considerable irony, as in Jean Sprackland’s “Supraventricular Tachycardia.” The body is distinctly flesh, but not a machine, “my excitable cells don’t wait for the messenger.” (p. 68)

Similarly, medical elections in this chapter range from Julian Offray de la Mettrie’s explicit Man a Machine (1749) to Varieties of Religious Experience (1902), in which William James argued that such medical materialism is a “too simple-minded system of thought.” (p. 81)

Chapter 2, “Nerves, Mind, and Brain,” the evolution of poetic and medical perspectives on mental and nervous disorders. Take, for example, melancholy. John Keats (1820) spoke in the third person when he described melancholy as a spirit that may fall “sudden from heaven like a weeping cloud” on helpless man. “His soul shall taste the sadness of her might / And be among her cloudy trophies hung.” (p. 88) A century later,  Edward Thomas, internalized melancholy, “What I desired, I knew not, But what e’er my choice / Vain in must be.” (p. 94) However, by the 21st century, poets have begun to assert their determination to fight and win at least small battles over depression, as Jane Kenyon wrote in “Having It Out With Melancholy.” Though “pharmaceutical wonders are at work,” she told her antagonist, “Unholy ghost, / you are certain to come again.” (p. 115) Medical writings from the 18th to early 20th century reflect a dramatic change in beliefs about the etiology of melancholy, from George Cheyne (1733), who claimed the illness was attributable to the damp climate, rich food, and sedentary lifestyle in England, to Sigmund Freud, who explained the disorder in purely psychodynamic terms.

The Body of Work contains countless such resonances between medicine and poetry that, from a medical humanities standpoint, give considerable added value to the more than 300 fine poems collected within.

However, the book does have one somewhat surprising deficit, given the editors’ avowed intentions. While contemporary poetry is numerically overrepresented (as is appropriate), the most recent medical writings date from 1919, aside from a brief excerpt from William Carlos Williams’ Autobiography (1948). Thus, most of the poems reflect dramatic developments in the understanding of illness that occurred in the last hundred years, while corresponding medical pieces are absent. Certainly William Röentgen’s “On a New Kind of Rays” (1905) and Joseph Lister’s “Illustrations of the Antiseptic Method of Treatment in Surgery” (1867) led to significant advances in the world of medicine, but haven’t similar developments in mid to late 20th century also radically influenced poetry about illness and healing?

Despite this caution, I strongly recommend A Body of Work to anyone interested in poetry about illness, or poetry and medicine, especially students of the health care professions and their teachers.

Book Review: Illness as Many Narratives

7 Mar, 17 | by cquigley

 

Illness as Many Narratives: Arts, Medicine and Culture

by Stella Bolaki. Published by Edinburgh University Press, 2016.

 

Reviewed by Birgit Bunzel Linder

 

Stella Bolaki’s Illness as Many Narratives introduces several instructive case studies that squarely fit into the critical mode of the second wave of the medical humanities. Drawing on diverse arts and media such as photography, film, animation, performance and artist’s books, the author argues for more extensive cross-fertilisation between contemporary arts and media practices and the medical humanities. Bolaki’s various interpretive approaches are offered as tools that aide in strengthening the dialogue between medicine and broader culture.

The concept of the ‘critical’ in the medical humanities has recently been defined as the ‘embrace of new historical, cultural and political perspectives, as well as different questions and methodologies.’ (Whitehead & Woods, 3) It is guided by the question how one might ‘productively rethink the notions of collaboration and interdisciplinarity’. (3) It is exactly this quest for collaboration and interdisciplinarity Bolaki successfully models in her book, thus adding new perspectives and theoretical tools from the arts and media to the illness narratives of the first wave and to the alliance with the social sciences of the second wave.

In the Introduction, Bolaki broadens the scope of narrative to include forms of art and the media that are related to communicating. These ‘emergent narratives’ allow in various forms and structures to tell of the messiness, complexity, plurality, and diversity of illness experiences while at the same time summoning ethical perspectives toward the nexus between individual socio-cultural and medical predicaments. This leads to the core of her argument, namely that ‘[i]t is the active fashioning of tools, this constructive process that draws on different disciplines and perspectives, that I argue should be at the heart of the critical medical humanities.’ (12) Ideally, this set of critical tools proliferates mutual interplays between the arts/media and the medical humanities, a ‘critical interloping’ (13) that decenters the literary narrative form in favor of collaborative and interdisciplinary representations.

In the chapters that follow, Bolaki introduces a variety of emergent illness narratives. She begins with two very dissimilar photographic representations of breast cancer, The Picture of Health? (1985) by Jo Spence, and Self Portrait in a Single Breasted Suit With Hare (2001) by Sam Taylor-Wood. The two photographic forms of exposure—one revealing and one concealing—are remarkable examples of how word and image together mediate the illness experience. Verbal aides, such as captions, interpretations, photo essays, other fragmented texts, and the integration of various cultural theories provide intimate and authentic witnessing of personalized experiences that influence public perceptions of breast cancer differently than either ways of communicating could do separately.

Martha Hall’s artist’s books chronicle her experience with breast cancer and her receding life. Artist’s books are primarily anti-establishment works of conceptual art that use and deconstruct the form of the book, making art accessible to the wider community. Hall uses paper sculpturing, unusual binding structures, and various crafts to translate her illness experience into viewable and touchable objects that draw the ‘reader’ into a participatory experience. Artist’s books have an advantage over literary texts because the non-diagnostic participatory touch establishes a clear association between ill body and illness narrative and invites individualized ethical considerations.

The Chicano performance artist Guillermo Gómez-Peña challenges cultural perceptions of the ill body and represents his own experience with liver and infectious disease. His performances connect the individual experience with and within society, and, as a pedagogical strategy, widens the gaze from the isolated ill body to its network of (cross)-cultural practices. Gómez-Peña performs two perspectives: the culture-bound medical view of the body and the body’s view of culture-bound medicine.

Nick’s Film/Lightning over Water (1979) by Wim Wenders records the last few weeks of Wenders’ friend Nicholas Ray who is dying of lung cancer. The film portrays the messiness, helplessness, and failures that arise from exploiting someone’s dying experience artistically. The film form makes visible the very unspeakability of death, and chronicles a shared experience that effects an immediacy of experience and poses unanswered questions. Perhaps the most therapeutic aspect of this palliative project to all involved is that in chronicling his own dying, Nick’s legacy survives through the film.

The experimental and autobiographical theater “Well” (2004) by Lisa Kron is a relational narrative of Ann Kron and her mother regarding their different therapeutic approaches to chronic fatigue syndrome and allergies. Through a radical change in lifestyle, the daughter’s story leads to healing, while the mother opts for medical treatment, yet cannot escape her illness. The play prepares for a realistic clinical uncertainty that is not just determined by medical limitations but also by different individual responses to illnesses and treatments.

Finally, a set of six collaborative online animation films called Animated Minds (2003) each address a mental disorder. While he patient’s voice-over narrates his or her experience, there is a collaborative effort in animation, coloring, and music. This form of collaborative artistic expression is particularly striking, and much of what remains unspeakable in the written word becomes speakable in animation and therefore counteracts isolation and stigma. Fish on a Hook impressed me the most. The very respectful, empathic yet matter-of-fact voice-over draws the audience into an alternative world (or what Bolaki calls ‘alternative knowledges’) of a mental disorder (agoraphobia and panic attacks) that might otherwise remain inexplicable. If the strength of Wenders’ film lies in its immediacy of experience, the relative anonymities in Animated Minds (and in particular Fish on a Hook) succeeds in a kind of distancing that allows critical and unencumbered engagement. It enables different dialogues about lived experiences that also include fear, resistance, loss, helplessness and the social context that define these.

Bolaki’s examples reveal several commonalities. All of them display a complexity and authenticity of experience, and result in productive learning from disorderliness and failures of representation that challenge previous discourses of mastery. In these examples, we can see what we already know but often ignore: that no patient’s illness experience happens in a vacuum, or, perhaps even more importantly, within a medical bubble. The deconstruction of art forms through messiness and fragmentation are a ‘body speak’: they mirror the ill body’s deconstruction and disintegration. Moreover, the artistic forms are of great importance because they are related to questions of ethics and politics that explore the many ‘metastasised’ conflicts around illness. The communicative acts are tightly bound to the question of ‘how to live (or die)’ and especially how to be perceived rather than merely how to be healed.

Although it has become a truism that a patient is more than his/her body or illness, each project Bolaki selected for her book, strongly foregrounds the mind and creativity of the artist and presents the patient (perhaps for some uncomfortably so) as a complex, lively, and creative being. Although the artists and performers deal with death and disorders, they leave a legacy that lives on. Combined with collaboration and public access, the suffering artist-patients nevertheless generate projects that are giving, instructive, tangible, and inspirational, and succeed in blending artful expression and poignant meaning. Perhaps herein also lies the difference between the first wave of medical humanities and the second wave: the former engages in listening and proxy-experiences, while the latter engages in participation and witnessing. This seems to be a logical next step.

What then about those who remain silent, those who don’t want to tell their stories, or those who cannot identify with the narratives already told? To re-phrase Tolstoy, ‘All healthy people are alike; each ill person is ill in his or her own way.’ How can the medical humanities represent the silence that is probably inhabited by the clear majority of those suffering from illnesses? Bolaki’s Illness as Many Narratives importantly reminds us that the content of the narratives might not represent everyone’s experience, but that the need to communicate one’s suffering is universal.

A very minor criticism of the book is that Bolaki assumes familiarity with the chosen materials. Her analyses are comprehensive and convincing, but it would have been good to have a general introduction to each project under discussion. I also felt that her diligent defense of emergent narratives might be preaching to the converted in literary circles, especially since she clearly and convincingly works out what her emergent narratives can do better than other word-based narratives: they solicit dialogues and shape perceptions in a much more public and political way.

Throughout her book, Bolaki underscores—by way of aesthetic, ethical, pedagogical political, and collaborative methods (tools)—the notion of narrative as telling in many forms, forms that favour expressive and evocative representations rather than linear story-telling. The photography, artists’ books, performance art, film, theatre and animation Bolaki introduces in her book reject the ‘cultural narrative of triumph’ (64) and invite instead critical interloping and inter-disciplinary dialogue. Bolaki’s Illness as Many Narratives is an intelligent and illuminating contribution to the field. A short review like this can in no way do justice to the book’s sagacity and importance.

 

Whitehead, A., and A.Woods, eds.  Atkinson, S., Macnaughton, J., and J Richrds, assoc. eds. (2016). The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.

 

London Human Rights Watch Film Festival

6 Mar, 17 | by cquigley

 

Film activism: London Human Rights Watch Film Festival- 6-17 March 2017,

https://ff.hrw.org/london

Introduction by Khalid Ali, Screening room editor

Film events have recently become a platform for standing up against social injustice, and racism; the Oscar ceremony on Sunday 26th February was a powerful statement from film makers uniting against violation of human rights. On the same night, London’s Trafalgar Square hosted a public screening of the Iranian film ‘The salesman’ demonstrating London’s diversity and support for the film director Asghar Farhadi in boycotting the Oscar ceremony in response to Donald Trump’s travel ban.

Between the 6th and 17th of March 2017, London once more shows its unwavering support of championing human rights by hosting the 21st edition of the London Human Rights Watch Film Festival. The films shown are particularly relevant for healthcare professionals as they shine a light on human stories from the front lines; narratives of doctors, nurses as well as patients deprived of their basic human rights in healthcare institutions and let down by oppressive regimes. Showing 16 documentary films, the festival engages its audience in debating a rich variety of topical global concerns. From the daily challenges of an Arab nurse in war-torn Iraq in ‘Nowhere to hide’, to the harrowing stories of young Moroccan and Yemeni girls forced into child marriage, and subsequent physical and mental traumas in ‘Child mother’, to the fight for humane care and justice by young Russian women sectioned in psychiatric units in ‘We’ll be alright’ and a Chinese terminally ill patient with work-induced leukaemia in ‘Complicit’, the LHRWFF portrays universal stories of hope and defiance.

Here is an introduction form the festival team:

‘In an era of global advances by far-right forces into the political mainstream, more than half the program explores individuals and groups exhibiting courageous resilience in challenging times, and celebrates the push for progress and transparency.

Revolutionary voices take centre stage in four titles, including our opening night film, the Oscar nominated ‘I am not your Negro’ by Raoul Peck- a stunning profile of US civil rights era writer James Baldwin, whose prophetic words, narrated by Samuel L. Jackson, bring us rapidly to the present. In ‘Girl unbound’, Maria Toorpakai becomes Pakistan’s finest woman squash player, despite Taliban death threats. In ‘Joshua’, Joshua Wong, a teenager from Hong Kong, orchestrates fearless student-led stand-off with the Chines government in the fight for democracy. And the infectious uncompromising humour of Egyptian comedian Bassem Youssef is the powerful string that draws back the curtain on his government’s crackdown on the rights of its citizens in ‘Tickling giants’.

Three of our films highlight inspiring collective action- from ‘500 years’, where the highly organised street protests of Mayan activists bring the truth to light in the courts of Guatemala; to ‘The apology’, where octogenarians, often referred to as ‘comfort women’, continue to demand accountability for the sexual exploitation by the Japanese army during World war II. Also screening is ‘Complicit’, which follows critically poisoned factory workers as they fight Chinese electronic giant Foxconn for acknowledgement, justice and health care.

Urgent and evolving issues of migration are explored in three titles that uncover the emerging reality of daily life as a refugee. In ‘The good postman’, the aging residents of a tiny Bulgarian town are split on whether to welcome or reject Syrian families fleeing war.

‘Lost in Lebanon’ takes a close look at the reaction of a country of 4 million inhabitants to the arrival of 1 million refugees. And in the highly emotive and deeply personal closing night film, ‘Nowhere to hide’, we accompany an Iraqi nurse and his family whose lives are suddenly turned upside down is their country is once again torn apart by war.

As always, the festival will host in-depth discussions after the screenings with film makers, protagonists, Human Rights Watch researchers and activists to offer you, the audience, a unique opportunity to ask questions and engage with topics covered in each film’.

The Human Rights Watch Film Festival Team

Vimeo trailer: https://vimeo.com/202960330

Recommended reading

  1. http://blogs.bmj.com/medical-humanities/2016/03/07/khalid-ali-london-human-rights-film-festival-9-18-march-2016/
  2. http://blogs.bmj.com/medical-humanities/2016/06/17/film-review-stories-from-arab-women-during-the-spring-revolutions/

Address for correspondence

Khalid.ali@bsuh.nhs.uk

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