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Reflections on Art, Voicelessness, and the Patient Experience

14 Feb, 17 | by cquigley

 

Emma Barnard MA (RCA)

‘Silence is not Golden’

 

‘For those who live neither with religious consolations about death nor with a sense of death (or of anything else) as natural, death is the obscene mystery, the ultimate, affront, the thing that cannot be controlled. It can only be denied’.

Susan Sontag

 

One time, a healthcare professional completely removed the artwork (that I’d made with patients) from the Patients As People exhibition stating that it depicted death. This puzzled me. I couldn’t work out where the offence had come from; the closest reference to death was a thought bubble of the words “RIP” that a patient had drawn over their portrait. That particular patient’s condition was actually relatively minor and not serious; surely the thought bubble merely reflected something we all think about when we are sitting in a hospital waiting room? Where better to contemplate one’s own mortality? GP Dr Jonathon Tomlinson says, ‘Doctors are tortured by the idea that death represents a failure of medicine and this is worsened by a punitive shame and blame culture and highlighted by mortality league tables.’ Medicine has a great deal to offer, and prolonging life is not the only item on the agenda. To paraphrase William Osler, ‘What’s important is not simply what is the matter with the patient but what matters to the patient’.

How do you respond though when someone asks you if they’re going to die?

As artist in residence within an ENT (Head and Neck) clinical department, I have been collaborating with surgeons to explore the patient experience through art. Part of the work I do involves discussing with patients their experiences immediately after the medical consultation, where they reveal what lies behind the mask that they present to the doctor. Very often, patients are at that point trying to come to terms with their diagnoses. On one occasion, when speaking to a patient who had received a diagnosis of laryngeal cancer, to my amazement they seemed unconcerned that treatment might involve removal of their larynx; their major concern was that ‘didn’t want to die’.

As someone whose work as an artist is dependent on being able to communicate both verbally and visually, I am particularly intrigued by a person’s loss of voice and how that might alter his or her life. People not only have to come to terms with having their larynx removed, using a feeding tube and learning to swallow, but they also become voiceless in the conventional sense, having to relearn how to communicate. As laryngeal cancer survivor Kay Baker states, ‘I felt as if my personality had been taken away from me because I could not express myself anymore’.

It is not the words spoken by the voice that are of importance, but what it tells us of the speaker. Its tone comes to be more important than what it tells. “Speak, in order that I may see you,” said Socrates. (1)

(Reik, 1956, p.136)

The voice is one of the most important means by which we communicate. In the words of Alice Lagaay, an academic philosopher from Bremen University:

 ‘A voice is both individual and communal: On the one hand, every human voice is unique, no two voices are ever quite the same. In this sense every voice is the signature of an individual’. (2)

 

 

Portrait photographs (which contain their drawings) of people who attend the Talking Heads group held at St Josephs’ Hospice which supports people who have had experience with laryngeal cancer.

 

The building was warm, friendly and welcoming. But in fairly familiar community-type surroundings, the sounds that I heard were not. I had been invited to present my work on patient experience to the group ‘Talking Heads,’ a support group for people who have dealt with laryngeal cancer; more often than not they are without a regular ‘voice’. Denise Redmond, having worked as a Macmillan nurse for some time facilitating the support group for laryngectomy patients, reflected: ‘If you removed the gearbox in a car then the car would have no useful function and be scrapped. Patients with laryngectomies really humble me in their ability to overcome not only a cancer diagnosis but to survive and live beyond their cancer treatment with a significant impact of treatment.  There is always a trade off with cancer treatment especially when the aim is to cure somebody. Removing the organ that lets the patient communicate, speak, sing, breathe and eat and drink which are normal basic functions to sustain life is debilitating holistically. It is a life-changing event’. 

‘That’s great, it looks lovely and clear now’, said the surgeon. Physically, everything looked good and how much easier it would be if illness was just about an individual’s physicality. That’s not the case, of course, the mental scars remain, exacerbated by lack of understanding from family, friends, and others, too often scared of the change in you as you speak in a way that they do not understand. Denise: ‘There are many misconceptions about “neck breathers” and they can be very isolated. I know doctors and nurses who are afraid to look after patients that have laryngectomies as they perceive the laryngectomy as difficult and complex when the patients themselves are masters of their own care’. 

Mike Papesch FRACS, an ENT Head and Neck consultant surgeon explains his viewpoint: ‘From a surgical point of view, it is very clinical…with the end goal being survival and with recognised significant social, psychological and personal impact. It is impact that may be underestimated by the patient, but it is not underestimated by the medical team looking after them. And indeed, the doctor understands the difficult choices that patients have in undergoing these treatments. Perhaps it is that the patient, in reality, has no choice as to the treatment and its impact, if they do not wish to die of the disease. The reality they face truly is this harsh. And the patient will never fully understand what it means to have head and neck surgery, until after the process. This process can take place over several months. People do make some recovery, but never return to their pre illness performance status. I would not wish this surgery on anyone, but if they needed it, I would embrace it, advise it, and undertake it willingly, knowing full well it was done as a lifesaving, albeit life changing, intervention’.

Illness isn’t something you wave goodbye to in the consultation room after your appointment or in the theatre after a surgical operation. It follows you home, it is with you while you sleep and haunts you in your waking moments. In the words of Susan Sontag ‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick’. Days, weeks, years, and it is still there, refusing to let go. Unlike other cancers, which to a certain degree, are invisible, this one remains in full view for all to see and because there seems to be so little knowledge on the after effects, responding to someone who has had this disease can be uncomfortable for the onlooker.

 

Of the legacy that is laryngeal cancer, two years on Kay Baker writes:

No airway

No smell

Not much taste

Eating and drinking very slow

Have to be very careful in the bath – cannot get water down my stoma

Never go swimming (would drown)

More difficult to breathe especially in very hot, cold and windy weather

My life is so different now and there have been times when I have had bad thoughts – why this cancer, why me? Not wanting to live.

 

What I don’t like is people thinking there is not a PROBLEM.

No escape – there is a constant reminder every minute of the day – as soon as I wake up, unlike other cancers.

There is no hiding place.

Silence is not GOLDEN as the song goes!

 

‘Silence remains inescapably a form of speech’. Susan Sontag

 

References

1 Reik, T. (1946) The Ritual: Psychoanalytic Studies, Bryan, D. (trans). New York: International University Press.

2 Lagaay A 2008 Between Sound and Silence: Voice in the History of Psychoanalysis Freie Universität BerlinVolume 1 (1), ISSN 1756-8226

Quotes from: http://research.ncl.ac.uk/e-pisteme/issues/issue01/contents/e-pisteme%20Vol.%201(1)%20-%20Alice%20Lagaay%20(Full%20Text).pdf

Emma Barnard MA (RCA)

Bio

Emma Barnard is a visual artist, specialising in lens-based media and sound installations. Her work deals with social commentary, seeking to highlight contemporary issues and encourage debate surrounding them. The experience Emma has gained through several years of working with consultant surgeons and their patients from various disciplines, including ENT and Psychodermatology, is now influencing the field of medical education. Her “Patient as Paper” project (co-founded with Mr Mike Papesch FRACS, ENT consultant surgeon) artwork is currently being exhibited widely in galleries, universities and hospitals in England and internationally. It has been presented at several conferences within the medical and medical humanities fields, and most recently at University College London, Medical School and in a series of presentations at Surrey University for the Department of Health Sciences. At King’s Medical School in London Emma has led a highly successful pilot project to introduce art into medical education, undertaken in conjunction with a critical care consultant and a fourth-year medical student. An exhibition of this work is planned for later this year.

@PatientAsPaper

Exhibitions:

‘Patients As People’ (work created alongside patients) – currently installed within the Department of Health Sciences, Surrey University, Guildford

More information:

https://www.facebook.com/PatientAsPaper/?ref=aymt_homepage_panel

‘A Stitch in Time’ series of works to be shown at The Lawson Practice, London at the invitation of GP Jonathon Tomlinson during February/March.

Artist page – BerlinBlue Art: http://www.berlinblueart.com/emma-barnard

 

 

Film Review: It’s Only the End of the World

8 Feb, 17 | by cquigley

It’s only the end of the world, directed by Xavier Dolan, Canada, France 2016.

In UK cinemas from 24th February 2017

Reviewed by Dr Franco Ferrarini

 

Louis (Gaspard Ulliel) is a 34-year-old gay playwright who feels an urgent need to meet his family after 12 years of estrangement, to tell them about his terminal illness and impending death. Unfortunately, instead of the help and compassion he is looking for, he is met by a climate of anger, violence and indifference; his sister Suzanne (Léa Seydoux) blames him for not taking her away from the family home, his brother Antoine (Vincent Cassel), the man with bruised knuckles, envies and resents his success, and his mother Martine (Nathalie Baye) keeps cooking huge amounts of food, in a futile attempt to keep her dysfunctional family together. The only person who shows empathy towards Louis, the lack of which lingers over the whole narration, is his sister-in-law Catherine (Marion Cotillard in an outstanding performance), a sensitive and shy woman who is clearly oppressed by her husband Antoine. Catherine and Louis exchange silent glances as their own means of communication, and sharing of each other’s emotions in a way words could not provide. Apart from Catherine, the rest of the family do not understand, or even try to understand Louis’s tragedy. The narrative goes on with the cuckoo-clock watching over Louis reminding him that he is running out of time. The recollection of past moments in flashbacks provides a flicker of light in this otherwise dark homecoming day.

Adapted from the 1990 play by Jean-Luc Lagarce “Just la fin du monde”, Xavier Dolan’s film is mainly based on close-ups and dialogues and virtually no action. The story-telling style reminds us of Gille Deleuze’s ‘time-image theory’ where we can appreciate the flow of time either directly, without the intermediary of motion (time–image) by means of dialogues, monologues, flashbacks or memories, or indirectly, by observing the motion of objects or people (motion-image) (1).

The theme of lack of communication is at the film’s heart, a common finding in many modern families (Camille’s song “Home is Where it Hurts” (played in the soundtrack seems particularly appropriate).  In our ever-connected society everybody is, so to say, friends with people whom he’ll never meet and ‘will never be there for’ (2). Virtual ‘Face book friends’ are not there when they are truly needed, they cannot listen or help in times of trouble. It seems that today’s society is very similar to Louis’s family, where everyone is self-centered, and the presence of others can be an annoyance to everybody’s shouted solipsism, a cause of envy and subsequent rage.

The lack of empathy shown by Louis’s relatives, and Catherine’s inability to use words to express her feelings, are two issues that are particularly relevant to physicians. The metaphor in the film reminds us that we need to sharpen our skills in empathy; if we just sit back and listen idly to what our patients say we might miss vital information about their diagnosis, but more importantly we might miss a lot about the patient herself/himself. We might understand which kind of disease the patient has, but certainly not connect with the patient who has a certain disease. A clinical behaviour based on true empathy helps us grasp not only what patients say, but what they are not able to say. Patients’ inability to express their feelings as well as their symptoms is highly prevalent in the general population; alexithymia has been diagnosed, for example, in 17% of an adolescent Italian population (3). Empathy can be learned (4, 5), and should be taught in medical schools.

The film struck a chord with the festival audience winning the Grand Prix and the Ecumenical Jury Prize in Cannes Film Festival in 2016. It is a different film for viewers who are used to action-packed block-busters; it excels in analyzing non-action in the life of a modern day family, and in doing so provides food for thought, reflection and empathy.

 

References

  1. https://monoskop.org/images/6/68/Deleuze_Gilles_Cinema_2_Time-Image.pdf (accessed Feb 3 2017).
  2. Placebo, Too many friends, from the album Loud Like Love, Universal Music, Virgin EMI, 2013.
  3. Scimeca G et al. The relationship between alexithymia, anxiety, depression, and internet addiction severity in a sample of Italian high school students. Scientific World Journal 2014; 2014:504376. doi: 10.1155/2014/504376.
  4. McDonagh J and Ljungkvist V. Learning empathy: medical school and the care of the dying patient. Journal of Palliative Medicine 2005, 2(4): 383-89.
  5. Bearman M et alLearning Empathy through Simulation: A Systematic Literature Review. Simul Healthcare 2015; 10:308-19.

 

Email for correspondence: francoferrarini.ff@gmail.com

Book Review: True Tales of Organisational Life

6 Feb, 17 | by cquigley

 

True Tales of Organisational Life

Barbara-Anne Wren

Karnac Books Ltd, 2016

ISBN-13: 978-1-78220-189-2

 

Reviewed by Dr Andrew Schuman

 

It’s stories, the psychologist Barbara-Anne Wren reminds us, “that will hold us when nothing else can”. They are humankind’s most effective way of making sense of the world – of organising and giving “a shape to experience”.

The organisation in question, both in the title and at the heart of the book, is the National Health Service (NHS): a gargantuan body employing around two million people. The individuals, working within the service in these straitened times, are facing unprecedented challenges. Relentless waves of financial cuts, along with breathtakingly costly systems of regulation and inspection, have left a workforce more disillusioned and more demoralised than ever before.

Wren’s work as a psychologist and organisational consultant, in a busy London teaching hospital over the past seven years, has been ground-breaking. Rather than seeking the impossible, of  “banishing” emotion and distress at an individual level, her remit has been to “manage meaning and complexity, understand emotional life at both an organisational and individual level, and create spaces in which the unique challenges of healthcare work could be observed and understood.” Some remit.

The strength of Wren’s book lies in her first-hand account of setting up this therapeutic space – in the form of Schwartz Rounds. Originating in America, they consist of a monthly meeting of health professionals, in a forum that is non-hierarchical and deliberately organisation-wide. Their primary focus is on the human dimensions of providing care. Rather than chasing action-points and outcomes, the emphasis in these meetings is on quiet reflection and stillness – storytelling without a means or an end, where “rational and emotional experience have equal permission to emerge”.

At their core is the work of Kenneth Schwartz, a US lawyer, who died of lung cancer in his forties. His own story of diagnosis and treatment was, he writes, “punctuated by moments of exquisite compassion”, [that] “made the unbearable bearable”.  The article he wrote, shortly before he died, serves as a rallying-call:

I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rule-books, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them…

Our response to his plea must be to support and enable those working in the front-line of the health service – and to encourage and inspire a greater emotional engagement with our patients. As Wren reminds us, psychology’s modus operandi is in “relationship”: “it is dynamic… It works because it moves.”

The protected time and head space of the Schwartz Round give participants permission to open up about the very things that really move them – “what they were proud of, exhausted from”, but also “what saddened and puzzled, infuriated and frightened, humbled and inspired them.”

Two-thirds of the way through the book, we get to its raison d’etre: a collection of seven stories, garnered from the many Schwartz Rounds that Wren has facilitated. These “true tales” (of the title) illustrate the limitless ways in which a particular story is able to “move”, in all senses of the word. They tell a tale, but they show us a greater truth: that stories “will hold us when nothing else can”. With their beginnings, middles and ends, they can bring order and sense – and “sustain us”. Some of the stories arise from clinical issues, others from tensions that can occur between our personal and professional lives; still more concern conflicts at an organisational level.

One of them concerns a “macho” transplant surgeon, who needed to travel to another hospital in order to harvest an organ, before returning gung-ho, aware only of “the happy anticipation of the expectant, hopeful patient” whose life he would be saving – and “ready to demonstrate his skill and authority”. As the successful retrieval surgery came to an end, and the surgical drapes were removed, there was a rustle of paper below the body of the child donating the organs – and a teddy bear tumbled to the floor. The teddy bear was the very first thing the child had been given when he was born; the paper some pages on which family members had imprinted their hands, so that the child would die “in their arms”.

As soon as this was explained to the transplant surgeon, “a ring of steel around his emotions was broken”. By the time of the Schwartz round, the surgeon succeeded (only just) in “gather[ing] up all his energy”, and recounted his experience – including the detail of the teddy bear.

Reading this stopped me short. It also brought to mind the words of the American writer, Maya Angelou: “There is no greater agony than bearing an untold story inside you”. The surgeon’s burden had been made lighter by the telling of his tale, while those listening, bearers of this confessional, could respond only with silence.

Wren unpacks each of the stories she gives us – in this particular case, reflecting on the challenge for clinicians of balancing feelings of sadness and grief with “the business of living”. We need to know, in order to function for the good of all of our patients, when to block each of them out. Both feelings are, of course, essential.

Another tale looks at the case of an abusive patient – but from the perspective of the staff looking after her. As Wren points out, the focus of the Schwartz Round is more on effects than causes: here, the focus was on the impact of the abuse on the individual staff members, and the “reality of what they have to withstand”. Faced with this situation, we can sometimes summon up compassion and creativity; at other times, we’re all too aware of the limits of our compassion. But Wren gets the participants to “question the balance between what is being required of them, what they have left to give, and the containment and support they are being offered” – while appreciating, and exploring, the ways within the group of dealing with such abuse.

The book is not without faults. The editing could have been a little tighter. At times, Wren’s prose tends towards the mystical. Elsewhere, her generalisations can seem weak. “Everyone”, she tells us, “wants to be a psychologist, or is one, or knows one”. Her statement, that patients in hospital “[a]ll have families who want them back” seems, sadly, a tall tale.

But True Tales is good on the practicalities of voicing disharmony in the workplace, and of seeking ways to resolve these conflicts through the timeless alchemy of stories and story telling. “Ever since we were little, the stories have kept the darkness at bay. That and each other will get us through.”

 

Dr Andrew Schuman

Dr Kenyon & Partners,

19 Beaumont St., Oxford, OX1 2NA

 

andrewschuman@doctors.org.uk

 

 

Book Review: This Way Madness Lies.

1 Feb, 17 | by cquigley

 

This Way Madness Lies. Madness and Beyond. By Mike Jay. London: Thames and Hudson, 2016.

Reviewed by Dr Allan Beveridge

 

Published to accompany the recent Wellcome Collection Exhibition, ‘Bedlam: the asylum and beyond’, this book is packed with over 600 photographs and illustrations drawn from the archives of institutions in Europe and America, as well as with art work by patients from a wide range of different eras and locations. The book is, itself, an ‘object’ and deserving of close study. At first sight, it seems a marvellous exhibit. Crammed with images from a bewildering variety of sources, it entices the viewer and, perhaps intentionally, disorients them with the clash of visual material. There are countless black and white photographs of asylum inmates, architectural plans of institutions, portrayals of psychiatric treatments such as the strait-jacket, lobotomy and malarial therapy, magazine advertisements for medication, cinema posters of asylum horror movies, anti-psychiatry placards, and a selection of art by well-known artists such as Hieronymus Bosch and Theodore Gericault, as well as celebrated patient-artists like Richard Dadd, Louis Wain and Adolf Wolfli. The organisers of the project have been able to mine a very rich seam of archival material and, possibly, they have been loath to exclude any of it from the book. The result is that while there are numerous large colour reproductions, there are also too many pages where multiple images have been crammed onto the one page. For example, page 16 has fifteen small black and white images of scenes from the story of Bethlem Hospital. The pictures are simply too minute and poorly defined to be properly viewed and appreciated. This is the fate of many other images which are bundled together onto the one page. This is frustrating because from what one can make out of the pictures, they are full of historical and aesthetic interest.

A more serious concern is that of the ethical questions raised by showing photographs and images of patients, often in distressed and degrading conditions. Should such images be shown? The men and women featured were not able to give consent. Should their only appearance on the historical record be that of their time as an asylum inmate with no reference to other aspects of their life such as, for example, being in a relationship, being a parent, or having an occupation? If the photographs are displayed, should the patients be identified by name or should they remain anonymous? Does anonymity serve to protect the identity of the patient or to make them even more of an ‘object’, lacking individuality?  Are some images too demeaning and disrespectful to the subject to be exhibited? These are difficult ethical questions which have provoked discussion amongst fine art commentators, historians and psychiatrists: they are no easy answers. Nowhere in the book is there a discussion of these vexed issues or even an acknowledgment that the presentation of this material may be problematic. Further, these images and photographs of patients were created for a variety of purposes. Some clinicians, such Sir Alexander Morison wanted to delineate what he saw as the particular ‘physiognomy’ of different types of mental conditions and paid professional artists to accompany him to asylums to make sketches of selected inmates. Charcot sought to capture the apparently spontaneous ‘hysterical’ behaviour of his patients at the Salpetriere, but research suggests patients adopted the poses expected of them. Other photographs of patients participating in the activities of the asylum were meant to advertise the benefits of the institution. Again, apart from the accompanying captions, there is little discussion of this or the particular context in which each image was commissioned.

One is reminded of the well-known episode in the history of Bethlem Hospital, or ‘Bedlam’ as it came to be known, where the general public were allowed to visit the asylum to view the inmates. Some saw it as educational, whilst others saw it as entertainment and a source of titillation. This practice was eventually stopped in 1770, but one is left with the uneasy feeling that this book in some ways represents a modern version of visiting Bedlam. At least the 18th century inmates were able to engage with the public and give an account of themselves. Here the patients, frozen in images and photographs – ‘mute inglorious’ –  have no means of putting forward their side of the story.

The writer, Mike Jay provides the text of the book. Generally he provides a balanced and readable account of this contentious area. Neither telling a tale of benign progress, nor, contrastingly, a catalogue of the disasters inflicted on the mentally ill by the supposedly-evil empire of psychiatry, Jay prefers to see the history of psychiatry in terms of a pendulum swinging between psychological and physical approaches to madness, and between institutional and community responses. He is thus able to see the good and bad in different periods. He is less inclined than Andrew Scull, whose recent volume, Madness in Civilisation he cites approvingly, to perceive the undoubted abuses and wrong-turnings of psychiatry in terms of wicked and self-serving clinicians, and more as a result of their misguided intentions and the sheer complexity of mental illness.

The book is divided into sections: the 18th century madhouse; the 19th century lunatic asylum; the 20th century mental hospital; and ‘beyond the asylum’. At the centre of the narrative is the story of Bethlem and its founding in the thirteenth century, which Jay goes on to trace through its evolution as a madhouse, an asylum and, finally, a modern day hospital. As Jay is well aware, Bedlam, or rather the mythology of Bedlam, has long been part of our folk-lore and culture. John Webster, Jonathan Swift and William Hogarth all depicted the institution. Jay is good on cultural representations of Bethlem and points out that, from an early stage, these portrayals bore little resemblance to the actual hospital. He mentions famous Bethlem residents such as James Tilly Matthews who drew up a visionary architectural plan for the new Bethlem which uncannily anticipated the building that was eventually created. He mentions, too, Richard Dadd, the parricide, whose strange and highly detailed paintings were, arguably, more striking than the works he created before his incarceration.

Jay also takes in developments in the rest of Britain, as well as in Europe and America. He charts the failure of the 19th century asylum which became over-crowded with incurable patients, the development in the 20th century of the mental hospital with its hope that physical treatments would return patients to their homes, and community approaches in our own time which have been ham-strung by a lack of funding. He examines the rise of pharmacology and alternative therapies. As in previous times, a variety of therapies crowd the market-place.  Jay places a particular emphasis on the story of Geel, the Belgian town where for many centuries patients have lived with local families and worked in the community. Jay sees this example as the way forward in our post asylum world.

A recurring trope in Jay’s account of the history of madness is that the world is one vast Bedlam.  He quotes the campaigner, Thomas Tryon observing in 1689: ‘The world has become a great Bedlam, where those who are more mad lock up those who are less’. (p. 52) The 19th century alienist, Dr John Conolly greatly extended the list of those he felt would benefit from asylum care. As Jay wryly observes: ‘The logic of the perfect asylum, taken to its logical conclusion, was that the entire world should become one.’ (p. 120) At the beginning of the 20th century, Jay argues,  madness seemed to have escaped the asylum and taken root in the culture at large as an entire generation was slaughtered in the insanity of the First World War. He concludes, somewhat provocatively:  ‘In the wake of the asylum, the world has become a great Bedlam’. (p. 218) Whether or not one agrees with this, it does serve to emphasise that the difference between sanity and insanity is perhaps not as marked as we would like to imagine.

The book, then, is a mixed achievement. The images veer between the stunning and the indistinct, and there is a curious lack of an ethical context to them. However, Mike Jay’s text is, in the main, even-handed, and for those new to the field, an accessible and well-written introduction to the history of psychiatry and madness.

 

Dr Allan Beveridge

Editor-in-Chief post at Medical Humanities

25 Jan, 17 | by cquigley

 

The Institute of Medical Ethics and BMJ are looking for the next Editor-in-Chief who can continue to shape Medical Humanities into a dynamic resource for a rapidly evolving field. Candidates should be active in the field, keen to facilitate international perspectives and maintain an awareness of trends and hot topics. The successful candidate will act as an ambassador for the journal supporting both pioneering authors and academics publishing their first papers. The candidate will also actively promote and strengthen the journal whilst upholding the highest ethical standards of professional practice. International and joint applications are welcomed.

Interviews will be held on 24th March 2017.

Term of office is 5 years; the role will take 12-15 hours a week.

Contact Kelly Horwood (khorwood@bmj.com) for more information and to apply with your CV and cover letter outlining your interest and your vision for future development of the journal.

Application deadline: 24th February 2017.

Start date: June 2017

Further information here.

Book Review: Thinking in Cases

23 Jan, 17 | by cquigley

 

Thinking in Cases

by John Forrester. Published by Polity, 2016.

Reviewed by Dr Neil Vickers

 

John Forrester, who died in 2015, was the most original historian of the human sciences of his generation. His great love was the history of psychoanalysis – he was for 10 years the editor of the journal History and Psychoanalysis – and he published no fewer than 4 major books in that field, including the classic Freud’s Women (which he wrote with his wife, Lisa Appignanesi).

Thinking in Cases is the first of two books to be published posthumously, the second being the monumental Freud in Cambridge (co-authored with Laura Cameron), due out later this year. It comprises six essays written over the last two decades on what he memorably termed ‘case-based reasoning’. Forrester, along with many historians of science, believed that case-based reasoning had embedded itself in a variety of disciplines, in ways that experts were often reluctant to acknowledge. It might be thought that in the era of evidence-based medicine, medical education no longer needs the case. Yet, as Forrester argues in his classic essay, ‘If P, Then What? Thinking in Cases’ (1996), novice practitioners learn their science by absorbing a handful of standard experiments from scientific textbooks. These case studies – for that is what they are – serve not only to make the underlying principles more memorable, they also provide something like a shared professional memory.

Much of Forrester’s thinking on case-based reasoning was informed by his decades-long engagement with the work of Thomas Kuhn, with whom he studied in the early 1970s. The most brilliant essay in the book (‘On Kuhn’s Case’) treats the evolution of Kuhn’s thought as a case study in how the philosophy of science actually works at an individual level. Kuhn, it turns out, came from a family that was steeped in psychoanalysis. His grandmother had analysis in Cincinnati with Alfred Adler, sometime in the 1910s or early 1920s. His mother edited some of Karen Horney’s works. And most important of all, he twice underwent psychoanalysis himself, first (briefly) as a child, and again as an adult, between 1946 and 1948. The end of this second analysis coincided with two great changes in Kuhn’s life. He was admitted into the Society of Fellows at Harvard which enabled him to abandon his career as a theoretical physicist and to become a historian of science instead. And he embarked on a marriage that lasted 30 years. He decided to abandon physics for history when he read Aristotle’s Physics. At first he was baffled by the great man’s obtuseness. How could someone who had written so penetratingly on so many other subjects have got the laws of the physics so wrong? But one day it dawned on him that Aristotle was investing concepts like ‘motion’ with completely different meanings from the Newtonian ones he had learned as a boy, and that, once he had made allowances for this altered usage, Aristotle’s physics not only made sense but was far in advance of its time. This Gestalt shift in his own thinking was the first instance of the famous ‘paradigm shift’ which became the master idea of Kuhn’s book The Structure of Scientific Revolutions (1962). Forrester leaves us in no doubt that it was the result of analysis. In an interview published in 2000, Kuhn stated that it was while he was in analysis that he learned ‘to climb inside people’s heads’. He recognised that this ability was central to his work as a historian of science and that for this reason he owed psychoanalysis ‘a tremendous debt’, even though he didn’t much enjoy being a patient. The Aristotle epiphany occurred while he was in analysis. Forrester points out that Kuhn’s method was both individualistic and psychologistic. Kuhn called himself an internalist historian of science because of his overriding preoccupation with the problems his subjects were trying to solve. The historical contexts in which they tried to solve them were a secondary matter. But he was an internalist in the more informal sense that he worked by climbing into other people’s heads. In the same interview Kuhn recalled feeling he could ‘read texts, get inside the heads of the people who wrote them, better than anybody in the world’. These other people were encountered as auxiliary selves – extensions of himself. Forrester quotes several anecdotes Kuhn told about himself in which new selves – famous scientists all – would arise almost in the manner of out-of-body experiences.

The other highlights of the book for me were two pieces on the LA analyst, Robert J. Stoller (1924-99). The first puts forward an extended speculation concerning Stoller’s analysis of a woman on whom he conferred the pseudonym Belle. Belle is the protagonist of one of Stoller’s best books, Sexual Excitement: The Dynamics of Erotic Life (1986). The turning-point in Belle’s analysis occurred when she described a daydream she’d nurtured from childhood in which a figure called The Director instructed her to humiliate herself sexually before a group of adults (and sometimes animals). Stoller was bothered by what he took to be his patient’s seductive behaviour towards him. It was only in retrospect he realised she was pressing him into the role of the Director. (Belle’s mother was a famous Hollywood actress who took up with a number of Directors. The injunction to perform was everywhere in family life.) Forrester suggests it was from Belle that Stoller drew his controversial theory that sexual excitement ultimately depended on hostility. He suggests that the book detailing her case history, written years after her treatment ended, was an attempt to model a more benign form of watchfulness for her. Stoller consulted Belle over every draft of the book and gave her carte blanche to alter anything she didn’t agree with. It was sobering for them both to discover that they had very different views of what had been valuable in their work together. Forrester suggests that the writing of the book was the decisive part of the treatment for through it he showed her that he didn’t need to be entertained by her. ‘If he had not published his book,’ he writes, ‘her analysis would have been a failure.’

The second Stoller-related chapter (unpublished until now) is a paper on ‘Agnes’, one of the world’s first male-to-female transsexuals. Agnes’s case was first described in Harold Garfinkel’s Studies in Ethnomethodology (1967) but Garfinkel took Stoller on as a co-author as he was one of Agnes’s psychiatrists. Agnes claimed to have been born intersexed and, starting in the late 1950s, went through an arduous vetting procedure lasting many years in order to obtain surgical gender reassignment. Many years later she told Stoller that from the age of 12 she had in fact taken her mother’s hormone replacement medication which resulted in her acquiring female secondary sex characteristics. Garfinkel the sociologist thought that Agnes’s attempts to pass as female shed light on what maleness and femaleness were, as socially-credited qualities summoned up into being every moment of every day. Her deception about her history was just another instance of what she had to do to ‘pass’. Stoller on the other hand originated the concept of core gender identity on the basis of his treatment of Agnes. He met Agnes’s mother and discovered that she had regarded herself as male from the age of eight and that she had passed her own ambivalence about her gender identity on to her adored son, whose transformation into a woman she supported wholeheartedly.

Thinking in Cases is an ideal introduction to Forrester’s thought, containing some of his most important papers. He combined a scientist’s delight in devising new methods to understand recondite things with an exceptionally acute sense of the role of contingency in intellectual discovery. These strengths were central to his style of reasoning and, as these pages testify, made him one of a kind. Everyone with an interest in the medical case history and its wider ramifications should read this book.

Film review: Arrival

19 Jan, 17 | by cquigley

 

What can aliens teach us about being human?

 

Review of Arrival, my film of 2016 (USA, 2016, directed by Denis Villeneuve)

By: Dr James Hartley, Foundation Year 2 at Brighton and Sussex University Healthcare Trust

 

The above question is one that is commonly asked in the sci-fi genre. Think Sigourney Weaver’s portrayal of homo sapiens eternal desire for survival when pitted against “the perfect organism” in Alien, or Scarlett Johanson’s exploration of the human experience in Jonathon Glazer’s abstract extra-terrestrial-thriller Under the Skin. In Arrival, the latest outing from talented Canadian director Denis Villeneuve, based on a short story by author Ted Chiang, the study goes more than skin-deep and profound questions are raised that have relevance to us not only as humans but as clinicians.

Twelve alien space crafts with the appearance of giant obsidian eggs have landed on our planet. Within each machine there is a gravity-bending corridor that, every 18 hours, opens itself, inviting visitors from planet earth. Dr Louise Banks (Amy Adams), a highly regarded linguistics professor, is tasked by the US military to establish a dialogue with the life forms within. As Colonel Weber (Forest Whitaker) puts it: ‘What do they want? Where are they from?’ Her partner for the challenging task is Physics jock, Ian Donnelly (Jeremy Renner). Using linguistic science as their weapon, the duo battle with the 7-legged ‘heptapods’ and their inky ‘logographic’ scrawls. In the global backdrop, there is a growing unease amongst certain nations about the true nature of the intergalactic guests and to complicate matters further, Dr Banks is struggling with a growing intensity of traumatic memories and visions. The film builds to an emotional climax and ends as any good cerebral drama should; answering some questions whilst leaving others open for further thought.

Language and the role it plays in our thinking is the beating heart of the film. Defined as “the method of human communication[i]”, language is something that many of us take for granted. At 18 months old, humans already have a vocabulary of 50-100 words, and by age 5, some of us are able to practice the art of literacy, lending permanence to our thoughts and cognitions. But how does language influence our thoughts? And is it even possible to ‘think’, without language? In linguistic circles, these questions sum up a theory known as the ‘Sapir-Whorf hypothesis’. Whilst the theory is not without contention there does appear to be a growing body of evidence demonstrating the powerful effect of language on thought.  In their study into the effects of Korean and Chinese language on visual interpretation, Rhode et al (2016) showed a statistical difference in “attentional bias”. Korean speakers were more likely to focus on information in the background of an image (‘ground information’), whilst Chinese speakers better recalled information pertaining to ‘salient figures’ in an image. The authors postulate that the formal structures of language itself underpin these differences. In Arrival’s take on the Sapir-Whorf hypothesis, Dr Bank’s growing adaptation to the non-linear constructs of heptapod language allows her to perceive the world in a different light altogether – an eloquent, if somewhat hyperbolic, demonstration of the differences seen in Rhode’s 2016 study.

Thinking of language in a medical context, we can appreciate the impact of pathology on language in stroke syndromes. There are a number of language deficits that occur depending on the site of vascular brain damage. Wernicke’s and Broca’s aphasia are two ‘textbook’ examples (Harding M, 2014). The effect that these deficits can have on one’s cognition is demonstrated powerfully in the documentary film ‘My Beautiful Broken Brain’, which tells the story of Lotje Sodderland, a young Londoner who suffered an intra-cerebral haemorrhage in 2011. I was fortunate enough to see the film and meet Lotje, when she visited Princess Royal Hospital in October 2016 as part of the ‘World Stroke Campaign’. In the film Lotje presents the world around her after her stroke as surreal and frightening, comparing it to a David Lynch film. Lotje’s stroke had affected her temporal and parietal lobes, causing severe aphasia and changing her perception of the surrounding world forever. In an article for The Guardian, which Lotje dictated via siri following three years of intensive rehabilitation following the stroke, she explained that losing the ability to speak, read or write had left her “unable even to contemplate the idea of fear…as if I had become fear itself” (The Guardian, 2014). In a strange resemblance to Dr Bank’s familiarity with heptapod’s ‘non-linear logograms’ in Arrival, Lotje describes her new-found perception as lacking in ‘left-to-right’ patterns. In a further echo to Dr Banks character awakening at the end of the film, Lotje describes her new world as “a kind of rebirth; unexpected and painful, but also more vivid, filled with purpose, meaning and potential”. Not withstanding the significant differences that exist between Denis Villeneuve’s fictional screenplay and Lotje’s challenging reality; both Dr Banks and Lotje’s stories demonstrate the power of language in its influence on the mind.

Arrival is one of the most interesting and emotionally arresting films of 2016. It is refreshing to see a big budget Hollywood film not shying away from exploring a thought-provoking idea based on solid scientific grounding. In addition to highlighting the importance of language in human cognition, the film also delivers another topical message; the merits of compassion, understanding and tolerance in ‘trumping’ over wall-building and divisiveness, a message more pertinent than ever in our current socio-political climate and one I hope we can carry forward into 2017.

 

References:

  1. Rhode, a.k., voyer, b.g. and gleibs, i.h. (2016) ‘does language matter? Exploring chinese–korean differences in holistic perception’, 7.
  2. Harding, m. (2014) dysarthria and dysphasia. Medical information. Patient. Available at: http://patient.info/doctor/dysarthria-and-dysphasia (accessed: 3 january 2017)
  3. Sodderland, l. (2016) ‘i felt as if i had become fear itself’: life after a stroke at 34. Available at: https://www.theguardian.com/society/2014/nov/22/it-felt-as-if-i-had-become-fear-itself-life-after-a-stroke-at-34 (accessed: 20 december 2017)

 

Recommended further reading:

http://blogs.bmj.com/medical-humanities/2016/05/03/the-screening-room-the-aftermath-of-stroke/

 

Address for correspondence: james.hartley@bsuh.nhs.uk

Blog Curator and Books Editor Opportunity

18 Jan, 17 | by cquigley

Blog Curator and Books Editor Opportunity

 

We have a vacancy for a Blog Curator and Books Editor at Medical Humanities. It is a single, combined role as all book reviews are published on the Blog.

The role involves:

·         Commissioning and editing content, including reviews, for the Medical Humanities Blog;

·         Maintaining the Medical Humanities Blog and updating it regularly (currently on a weekly schedule, but this could be flexible within reason);

·         Liaising with publishers to receive new titles and organise reviews of relevant books for the Blog;

·         Contributing to the editorial team (comprising the editor-in-chief, associate editors and BMJ Publishing staff) that leads and manages both the journal and Blog, including attending the annual editorial team meeting;

·         Curating the content of the Blog to reflect the journal’s identity, priorities and interests;

·         Working with social media platforms to provide a coherent online presence for Medical Humanities

 

The role is flexible and can be adapted according to the successful applicant’s interests and availability. On average, the role takes approximately 4-6 hours per week. It is an exciting and creative opportunity to join a diverse and well-supported editorial team.

If you are interested in the role, you are welcome to contact the Editor-in-Chief, Prof. Deborah Bowman, for an informal and confidential discussion. Her email address is dbowman@sgul.ac.uk.

Applications, comprising a letter setting out a) the reasons for applying and b) suitability for the role and a curriculum vitae, should be submitted to Deborah Bowman at the above email address

Book Review: The Edinburgh Companion to the Critical Medical Humanities

17 Jan, 17 | by cquigley

9781474400046 

The Edinburgh Companion to the Critical Medical Humanities

edited by Anne Whitehead and Angela Woods (general editors) with Sarah Atkinson, Jane Macnaughton and Jennifer Richards (associate editors). Published by Edinburgh University Press, 2016.

Reviewed by Josie Billington, University of Liverpool

 

‘Critical medical humanities’, say the editors of this volume, marks a ‘second wave’ in the field. First-wave medical humanities was characterized by an emphasis on ethics, education (championing the arts in particular), and the subjective experience of illness, diagnosis and treatment. The second wave, by contrast, ‘energised’ by the social sciences, turns to interrogate the ‘primal scene’ of ‘mainstream’ medical humanities – the clinical encounter between doctor and patient, more specifically the diagnosis of cancer. Seeking a ‘thicker’ understanding, its focus is not ‘the lived body of the patient qua patient’ but the political, social and cultural contexts and factors (race, class, gender, sexuality, debility) which underpin or influence the illness experience. In thus self-consciously positioning itself as a foundational text of the new wave, the Companion, as we shall see, is opposed to the old binaries of patient/doctor, illness/disease, medicine/humanities within an orientation which saw the medical humanities as a ‘benign helpmeet’ to biomedicine. But this text is not seeking, therefore, to ‘create new binaries’ (between research and education, practice and theory). Rather, it stresses the ‘mobility’ and ‘fluidity’ of critical medical humanities offering ‘an encapsulation of the field’s current momentum’ as an area of inquiry that is ‘highly interdisciplinary, rapidly expanding and increasingly globalised’.

The book achieves this latter mission admirably. Formally organized into four thematic strands – ‘Evidence and Experiment’, ‘The Body and the Senses’, ‘Mind, Imagination, Affect’, ‘Health, Care, Citizens’ – the book’s introduction nonetheless acknowledges, and explicitly offers, numerous alternative trajectories. Among these, ‘Spatial Pathways’ emphasizes the value of social scientific methodologies within a global health context: Hannah Bradby’s and Sarah Atkinson’s chapters, for instance, on the migration of medical care resources (staff and organs) and Lucy Burke’s and Rebecca J. Hester’s on the politics and institutionalization of (respectively) ‘care’ and cultural ‘competence’, offer exemplary demonstration of how fine-grained interdisciplinary approaches (comprising history, sociology, human geography, labour and health studies, feminist and literary approaches) are critical to an understanding of the forces which shape health outcomes and policies. ‘Disciplinary pathways’ fulfils the volume’s remit of ‘extending to arts disciplines which have not been so influential to date’, the visual arts in particular. Suzannah Biernoff’s chapter on the ‘cultural scripts for being in pain’ (religious and secular) to which art from past ages gives access, Rachael Allen’s on the artist’s unique engagement with the body in the anatomy lab, and Edward Juler’s on the surrealists’ depiction of viscera as the dark and amorphous centre resisted by the ‘hygienic’ ego, emphasize the role of the visual arts in ‘reconceptualising the body and probing its position and status’ within biological constructs.

For all these second-wave emphases, the most dominant of these pathways across the volume is a rather familiarly ‘Historical’ one (isn’t that also a characteristic emphasis of mainstream medical humanities?), though the offerings themselves are fresh and rich. Corinne Saunders suggests that the literary representation of visionary transport and voice-hearing in medieval texts offers an alternative model to the contemporary diagnosis of psychotic symptom. In relation to the early modern period: Cynthia Klestinec explores the relation of touch and trust in the physician-patient dynamic and its contribution to the historical development of patient compliance; Jennifer Richards and Richard Wistreich recover what has been rendered invisible to modern medicine through the dominance of visual and written information – the primacy of the voice in the transmission of knowledge;  Lauren Kassell considers how digitization of medical records of the period, themselves newly driven by the advent of paper technologies, beg question about the kinds of evidence which constitute medical history. Looking back to the nineteenth century: Heather Tilley and Jan Eric Olsén find a valuable perspective on constructions of disability in pedagogy relating to blind pupils; Peter Garratt contends that the period’s shift away from metaphysical explanations for art to those of embodied psychological aesthetics offers valuable insights for contemporary models of bibliotherapy; Lindsey Andrews and Jonathan M. Metzl argue that nineteenth-century imaging practices help make visible a racial legacy within present-day imaging technologies.

I would add to the editors’ suggested pathways an Activist or Interventionist one, as this characterizes, for example, Lisa Guenther’s searing elucidation of the nexus of political, legal and medical power which legitimizes the barbaric practices of lethal injection for death row prisoners, as well as Bethan Evans’ and Charlotte Cooper’s challenge, via Queer and Disability Theory, both to dominant medicalised accounts of fatness and the tendency hitherto of conventional medical humanities to exclude or neglect activist movements. But I would also stress that ‘first-wave’ or ‘mainstream’ concerns are just as readily traceable. Ethical, for example, is an emphasis which (implicitly or otherwise) runs through William Viney’s study of twin research and the dangers inherent in the idea of ‘natural laboratories’; Luna Dolezal’s  argument that the increasing opportunities for technological enhancement of the human body urgently require a range of humanist perspectives to grasp the physical and existential toll, as well as the satisfactions, of morphological freedom; and David Herman’s contention, in relation to the value of animal companions for people living with autism, that a proper understanding of selfhood as situated within wider webs of creatural life, demands a new kind of ‘interdisciplinary and collective’ story. Experience of illness is at the centre of Jonathan Cole’s and Shaun Gallagher’s fascinating demonstration of neuroscientific and phenomenological  understandings working hand in hand within a clinical setting to de-pathologise chronic conditions and contribute to insights of therapeutic benefit; and, with a more decidedly historical inflection, Ian Sabroe and Phil Withington transpose the Renaissance-humanist conception of ‘counsel’ to modern-day clinical consultation to highlight the value of the emotional space opened by genuine dialogue between doctor and patient.

The really valuable aspect of this book, in fact, is its eclectic inclusiveness – ranging (as Patricia Waugh puts it in her helpful afterword to Part 1) from ‘the performatively paratactic and experimental to scholarly sobriety and sharp socio-cultural critique’ – enabling one to find the contemporary medical humanities one is looking for. This is perhaps the principal reason why some of the terms and concepts used to tie these strands together prove problematic.

‘Critical’, for example, usefully signals the influence upon second-wave medical humanities of twentieth-century post-war critical theory. But the influence of Foucauldian or feminist thinking is, from the evidence of this volume, a scattered and partial one and markedly less visible than the historical scholarship which, as mentioned above, predominates. Critical, in this particular sense, then, does not really hold the new medical humanities together. And, as Martyn Evans forcefully points out in his introduction to Part 3, a progressive critique is visible in the mainstream of medical humanities and traceable back to forebears in medical ethics, philosophy and sociology of medicine: indeed, ‘humanities have been seen as critical in the sense of being vital to medicine since long before medical humanities emerged as a discrete field of study’. Brian Hurwitz and Victoria Bates, on the place and history of narrative in contemporary clinical practice, and the challenges to models of narrative coherence offered by Laura Salisbury’s study of ‘disrupted, disordered’ aphasic speech in relation to the expressive practices of literary modernism and Jill Magi’s, Nev Jones’s and Timothy Kelly’s experimentally ‘cut up’ rendering of psychotic subjectivity, all – in their distinct and partly opposing ways – continue that trajectory. This is valuably the case, too, in relation to Rosemary J. Jolly’s contention that literary narrative ‘has a unique capacity to explore transcultural encounters of radically differing conceptualizations of wellness and disease’ and Anna Harpin’s analysis of the power of Shakespearean tragedy in a high secure setting (Broadmoor) ‘to relocate the patients’ index offences back within the continuum of human experiences’. The texts and contexts have changed or expanded but, as Jo Winning says in another of the overviews which usefully punctuate the Companion, these chapters ‘collectively and forcefully remind,’ as medical humanities has always sought to do, ‘that biomedical discourse is not the only knowledge base’.

While the volume thus witnesses and acknowledges these continuities, what critical medical humanities fundamentally represents nevertheless, the Companion asserts, is a displacement of the ‘common calculus’ within medical humanities whereby the biomedical ‘registers as the cold and deadening engine of facts and hard-nosed pragmatism’ and the humanities as the ‘non-reductive, life-affirming context expert’, where ‘all affect and feeling are to be found’. Thus, the new ‘E’ proposed as replacing Ethics, Education and Experience in critical medical humanities is that of ‘Entanglement’. Originating in science and technology, as Des Fitzgerald and Felicity Callard explain in their polemical chapter at the opening of Part I, the concept rejects the notion of separable units with determinate boundaries (persons, disciplines, ideas) whose telos is integration, in favour of a dynamic of intersection, inseparability, interdependence. ‘We cannot easily divide the practices (or objects) of “science” and “medicine” from the practices (or objects) of social and humanistic inquiry. We do not, as scholars from various disciplines, bring our objects and practices to one another through a kind of free-trade agreement; rather we re-enter a long history of binding, tangling and cutting.’ This thinking has self-evident applicability to the exemplary chapters which immediately succeed it: Annamaria Carusi’s on computational modelling of biological processes (a hybrid of interconnected experiments, equations, simulations) which underscores ‘the continuities between science and art as expressive modalities of meaning which do not merely communicate pre-existent meanings but forge new styles of knowing’; and Volker Scheid’s tracing of the genealogy of holism, a concept less emergent from, than retrospectively ‘accommodated’ to, ancient Chinese thought under mid-twentieth century communism, and subsequently assimilated to a Western systems biology. Entanglement as a conceptual frame for diverse interdisciplinary methodologies also promises, it is true, robust theoretical backing for a discipline which, as Stuart Murray points out, is often unfairly categorized as representing ‘a soft humanities approach’.

Still, there is something unconvincing about the way in which the notion is self-consciously introduced into separate chapters in order intellectually to stitch together these highly individualized offerings. Not only does the effort after conformity to the ‘critical’ line fly in the face of the ever-indeterminate heterogeneity which the concept of entanglement is intended to represent: in its recurrence, the idea begins to seem rather modish, especially when offset by the wealth of historically-oriented chapters which give priority to time-honoured practices and thinking over the latest scholarly fashions. The real paradox, however, is that what is potentially most valuable about entanglement in the context of medical humanities – its engagement with the ‘messy’, the ‘knotted’, its ‘staying with the trouble’ – is still best (or most authentically) demonstrated in this volume by examples of lived experience. So, for instance, when Christoph Rehmann-Sutter and Dana Mahr  show how a bio-medical construct inaccessible to direct experience – the genome – is nonetheless intrinsically part of the experience of those individuals who embody and ‘live’ it; so, too, when Jane Macnaughton and Havi Carel offer a compelling account of breathlessness as engaging cultural, emotional and existential dimensions which while ‘not part of the language of the clinic, are central to the patient’s experience’, thereby powerfully underscoring their contention that bridging this epistemic gap can challenge and broaden the evidence base on which symptomology is addressed clinically. These are exemplary models for what Macnaughton calls ‘a critically engaged “helping” medical humanities’, in which the ‘moral imperative’ is to improve understanding not only in scholarly/disciplinary fields, but also ‘in the clinic’. The primal scene, or the lived illness which it represents, is not so easy to leave behind, nor so necessary or desirable to reject, as the editorial introduction proposes. Indeed, medical humanities without the patient qua patient at its centre, Macnaughton appears to suggest, is in danger of facing an ethical dead end. Fortunately, the evidence of this volume is that second-wave medical humanities still has a strong orientation towards, as Callard and Fitzgerald put it, that ‘most central object of the medical humanities’ – life.

 

 

Related reading – themed issue on Critical Medical Humanities:

http://mh.bmj.com/content/41/1.toc#Criticalmedicalhumanities

 

Book Review: Re-Thinking Autism

9 Jan, 17 | by cquigley

9781849055819

Re-Thinking Autism: Diagnosis, Identity and Equality. Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). London and Philadelphia: Jessica Kingsley Publishers. 2016.

 

Reviewed by Jennifer S. Singh

Assistant Professor of Sociology at Georgia Tech and author of Multiple Autisms: Spectrums of Advocacy and Genomic Science

 

Is any stable and enduring definition of autism possible? Is autism a disruption of what it means to be human? Is it possible to imagine services differently? These are just some of many critical questions addressed in a timely edited book, Re-Thinking Autism: Diagnosis, Identity and Equality. The nineteen authors who contributed to this volume critically engage with “this thing called autism,” in order to disrupt the dominant biomedical model surrounding the diagnosis, treatment, and understanding of autism. The editors describe the volume as a collection of “critical autism studies,” an emerging field concerned with whether the diagnosis of autism is scientifically valid and useful for the lives of people who are labeled with an autism diagnosis, as well as their families and allies. The roots of this approach are cross-disciplinary and draw from a range of perspectives such as critical psychiatry, disability studies, cultural studies, and the social sciences. This three part volume has something for everyone – parents of children with autism, practitioners who provide various of services to people living with autism, and researchers and academics in a range of fields such as psychology, psychiatry, disability studies, cultural studies, or education. The scholars are primarily located in the UK, with a few authors from Canada, Australia, and Brazil. This assemblage of disciplinary perspectives and geographic locations provides important insights into the scope and depth of how researchers are thinking about autism through a critical lens.

The first part of the book grapples with the question: What is autism? It starts with a personal account from Katherine Runswick-Cole, who acknowledges the dilemma of her status as a mother-researcher and the risks of not challenging dominant biomedical frameworks of autism. The focus of her concern, like much of the other authors in this volume, is not about autism itself, but “the systems, attitudes, and environments that disable people with autism” (p. 23). She eloquently argues that “this thing called autism” is a contemporary cultural construct; a narrative that dominates or drowns out all other stories of autism that can be told. The next two chapters focus on the history of the changing definition and diagnosis autism and the wide variation of symptoms that exists in any one person with autism. Sami Timimi and Brian McCabe demonstrate how the biological understanding of autism has not become any clearer since it was first described by Leo Kanner in the 1940’s. These authors suggest that autism spectrum disorder is not a coherent biological construct and lacks conceptual clarity. Richard Hassall critically asserts that there is “no single distinctive psychological or neurodevelopmental disorder represented by the concept of ‘autism’” (p. 49). Hassall challenges us to re-think whether autism is a ‘natural kind’ of disorder, which conceptualizes autism as fundamentally biological deficiencies. This predominant framework reinforces those with the label of autism as essentially different and abnormal. The last chapter in Part 1 is an empirical study of public negotiations surrounding the category of autism in Brazil, including an analysis of the polarization within the Brazilian mental health community of the ontological status of autism (mental disorder or disability) and representations of autism in Brazilian printed media and online social networks. These different lines of analyses demonstrate how autism is no longer exclusively in the domain in medical science and extends to various other public spheres, including parent activists, lawyers, and virtual social networks. These alternative stories disrupt the ontological status of autism as a ‘problematic category.’

Part 2 of the book offers the most interesting critical analyses with a focus on deconstructing autism. It starts with a brilliant chapter by Anne McGuire who offers a critical and nuanced inquiry of the normative and normalizing nature of violence against people with autism promoted by mainstream news and advocacy organizations. McGuire examines the dominant discourse of ‘people living with autism,’ which discursively frames autism as some ‘thing’ separate from the fully living human person. Other chapters in this section also begin to question the framing of autism in the context of what it means to be normal and human. Kim Davies critiques the deficit Theory of Mind model of autism to expose how this ablest framework places autistic people at the ‘edges of the boundary of human being-ness” due to their lack of the very qualities that make us human (p. 133). Dan Goodley also begins to “dissect humanity” through the lens of autism and its relationship with the categorization of the human being. Drawing on post-colonial theory Goodley deconstructs how autism weaves in and out of both the ethnoclass man (embodied in the white, heterosexual, American, able, male) and those engaged in wider human struggle. His conclusion holds a similar sentiment that is thematic throughout this section, “any study of autism must also engage with the simultaneous study of the human” (p. 157).

Part 3: Changing Practice, is the largest section and made up of seven chapters that contend with whether the label of autism adds anything to how various services and practices of autism are experienced from a range of perspectives and disciplinary practices such as education, psychotherapy, psychiatry, or neuroscience. A central theme in this section is that professionals (e.g., educators, therapists, clinicians, or researchers) need to “resist the dehumanizing attacks on personhood that expel children to the margins” (p. 199) and “be committed to the qualities of people, not as autistic, but as human beings in shared moments of time and space” (p. 249). Gail Simon describes this shift in professional practice as having a “reflexive curiosity” about new ways of being with people with autism that opens up opportunities for meaningful and fruitful dialogue (p. 285). As I argue in my own research on the excess funding and research in autism genetics research in the U.S. (Singh, 2016), Simon and other authors highlight how many avenues of research that would be beneficial for people diagnosed with autism are missed or overlooked such as long-term and quality of life issues.

Although this volume brings much needed attention to alternative ways of knowing autism and critiques of the social construction of autism in relation to what it means to be “normal” and “human,” this is not the first attempt to map out a field of “critical autism studies.” Joyce Davidson and Michael Orsini edited a 2013 collection called Worlds of Autism: Across the Spectrum of Neurological Difference. Their conceptualization of critical autism studies is similar to Re-Thinking Autism and is based on an interdisciplinary commitment to “develop analytic frameworks using inclusive and non-reductive methodological and theoretical approaches to study both the nature and culture of autism” (p. 12). It is different in that it focuses more on how power relations shape the field of autism and how narratives of autistic individuals are becoming actors with agency that disrupt assumptions of normalcy and (cognitive) difference. Although power is implicit in many of the chapters in Re-Thinking Autism, the mention of power: who has it, how is it used, and how it affects what we know and understand about autism is less explicit, with a few exceptions. Also, unlike the serious commitment to situated knowledge of autistic people themselves in Worlds of Autism, a commitment to include autistic subjectivities are less apparent in Re-Thinking Autism. Finally, despite the subtitle, Diagnosis, Identity and Equality, there is a limited focus on inequalities that exist in access to early evaluation and services that are apparent based on social class, race and gender. I was surprised of the limited discussion of broader structural inequalities that enable experiences, autism constructs, levels of resistance, and/or cultural and symbolic meaning of autism. These voids are by no means limitations of the volume, but rather speak to the broad scope in which critical autism studies can engage and the need for further analyses on questions this edited volume raises on how we can continue to “re-think autism.”

 

Singh, Jennifer S. Multiple Autisms: Spectrums of Advocacy and Genomic Science. Minneapolis: University of Minnesota Press. 2016.

Davidson, Joyce, & Michael Orsini (Eds.). Worlds of Autism: Across the Spectrum of Neurological Difference. Minneapolis: University of Minnesota Press. 2013.

Runswick-Cole, Katherine, Mallett, Rebecca, and Sami Timimi (Eds.). Re-Thinking Autism: Diagnosis, Identity and Equality. London and Philadelphia: Jessica Kingsley Publishers. 2016.

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