Off Sick project

Posted on behalf of Dr Richard Marsden:

Scholars from the universities of Glamorgan and Cardiff are currently breaking new ground in the Medical Humanities with the Off Sick project. This research initiative, led by Dr Martin Willis and Dr Keir Waddington, puts a new twist on the well-known concept of the ‘illness narrative’. It focuses not on the people who actually suffer from illness, but instead on those who support and care for them. In this vein the project team is currently gathering stories from carers across the South Wales area.

This is very much an interdisciplinary project, which aims to explore not only how carers construct and define their experiences through stories in the present day, but also how they did so in previous decades and centuries. Moreover, Off Sick also brings in comparative material from the literary sphere, including fictional accounts, life-writing and poetry.

The peg on which this work is hung is the encounter with ‘medical institutions’. Indeed, the very idea of the illness narrative arose partly in response to a tendency for clinicians to neglect the experiences of the patient, seeing them instead in de-personalized terms as biological problems to be solved with science. Illness narratives are often perceived as a means of reversing this trend and re-empowering the patient.

For that reason, the stories that Off Sick is particularly interested in deal with visits to hospitals and other clinical settings. However, it is the ways in which carers and family members turn their experiences of such encounters into narratives that is the real crux of this research. This emphasis on the stories of those around illness, together with its holistic and comparative approach to contemporary, historical and literary materials, is what makes Off Sick so innovative.

The project’s findings will be showcased through academic presentations and publications, and also through an exhibition (scheduled for June 2011) which is aimed not at academics but at individuals and groups whose lives have been affected by illness and who have their own stories to tell about it. In addition, Off Sick runs a lively, varied and ongoing programme of events and public talks drawing on the expertise of literary scholars, historians, social scientists and medical practitioners.

For more information on the project you can visit the Off Sick website, join the Off Sick Facebook group or follow Off Sick on Twitter. Alternatively please contact the project’s Research Assistant, Dr Richard Marsden, on rmarsden@glam.ac.uk.

Not so Black and White

Are psychotic disorders accurately portrayed to the public through popular media? Darren Aronofsky’s “Black Swan” presents a ballerina’s descent into schizophrenia, caused by the pressure and competitive environment of her home and production company.

Nina (played by Natalie Portman) is cast as the Swan Queen in a production of Swan Lake in spite of initial trepidation that she would be unable to fulfil the unrestricted and carpe diem nature of the Black Swan. Swan Lake has the Black and White Swans; characters that are polar opposites from one another, and Nina’s state of mind is presented in relation to the character she dons at any particular time. Is this providing a too clear cut definition of the disorder? Schizophrenia is medically described as a progressive disorder, where as well as the white and black, there is a grey area where the disorder is not in full effect.

This grey area is not presented as much in the film, because the focus is on the Black and White Swans only. The clear cut definition is emphasised by scenes in the artist director’s flat in the film, where the entire room and all furniture is either black or white, with no other contrast given. The artist director himself, when describing the premise of Swan Lake, is reflected in a mirror as having two heads, suggesting a split personality of the oncoming mental disorder. A staging of disease progression is not acknowledged either during the film, and this could possibly lead to a misconception that schizophrenia is a disorder that is either fully present or completely absent.

Initially Nina is a very introvert, quiet character, embodying the White Swan’s innocence perfectly. The loss of inhibition and ability to cast of all shackles coincides with her metamorphosis into the Black Swan and the onset of her psychotic episodes. Whilst disinhibition is a schizophrenic episode, it is not the only likely path. Just as likely are negative symptoms, such as blunted emotions, a complete loss of pleasure and other functional disabilities. These are not touched on in the film, but are still severe symptoms of the disorder.

Overall, however, the film is extremely well made; a provocative and thrilling watch and I would recommend it without a moment’s hesitation. The feeling that the disorder could have been dealt with in a better way lingers, but does not diminish the final product.

John Stezaker and the Medical Profession

British artist John Stezaker takes portraits and various landscapes and questions conventional understanding of lines and flow. He creates collages of seemingly contrasting pictures into curious, coherent and captivating images, in this exhibition of various collections of his artwork. A few of us from the medical humanities course attended his exhibition held at Whitechapel Gallery (on till 18Mar11). This blog posting is an analysis of some of the images and their possible interpretations applicable to the medical profession.

Stezaker is perhaps best known for his Mask series which fuses celebrity portraits with landscapes and makes the stones and trees do the talking instead of eyes and mouths. A side-profile picture of a man and woman close to kissing have the fronts of their faces replaced by a picture of a gorge, one with straight edges, perhaps signifying no intimate connection actually exists. The same picture is then collaged with a gorge with overhanging trees and shrubs, hinting the possibility of growing into each other and a mingling of personalities, physical touch or mental connection. Such concepts could be applied to the changing nature of the doctor-patient relationship. The traditional lab-coat-wearing doctor with the paternalistic attitude is reminiscent of the straight-cut gorge. But this is slowly being replaced by the down-to-earth, rapport-building, patient-centred attitude, more similar to the image with the mingling of tree branches and shrubs between the gorges. In the words of Anatole Broyard, “How can a doctor presume to cure a patient if he knows nothing about his soul, his personality, his character disorders? It’s all part of it.”

The smaller series entitled Fall, fuses naked frontal and back photos, split along the length of the body, of man and woman. The uncanny similarities between both male and female body shape and lines flow almost seamlessly into each other (discounting the obvious cut down the middle of the image), but the intriguing part is the question of the purpose of the title. Perhaps the artist is hinting at sexual ambiguity and promiscuousity being the fall of mankind. However, such practices have been the talk of the town even in ancient biblical days of sex-shrines and sex-based religions, and despite fear of being taken out of context, the androgyny or fertility practices of Deuteronomy 22:5 "A woman must not wear men’s clothing, nor a man wear women’s clothing." Doctors are required to be thorough and probe into the sexual history of patients without being judgemental. Yet such topics are never taught sufficiently in medical school.

In his Marriage series, Stezaker joins cut portraits of different celebrities, either male-female, male-male or female-female, joining certain important lines to create on first glance almost schizophrenic images. Some of these were immediately visually appealing, but my eye took a little longer to adjust and consider the beauty of others. The brilliance of this series is probably in the way he makes some important facial landmarks meet so that it still retains a certain flow within the images, yet throwing out the rule that symmetry is intrinsically more appealing. Some of these portraits resemble burns victims I have seen in hospitals, due to the asymmetry of the faces and heavy wrinkles on one side but young smooth skin on the other.

Others combine "masculine" and "feminine" features, blurring the line between what we perceive as male and female. Again this may signify social stereotyping and draw attention to our own assumptions about others. Skin and especially facial irregularities are the subject of discrimination, ostracisation and bullying, resulting in self-esteem and massive psychological issues, to the extent of the desire or requirement of cosmetic, reconstructive or other surgery or medical intervention. However, it is arguable if surgical or medical intervention really do address such issues sufficiently, since it seldom gets to the root of such problems. Mostly, doctors tend to shy away from attempting to address the emotional/psychological/spiritual root of such problems, either because it takes too much energy and time, because we prefer to maintain an exclusively "professional" relationship, or because we are not taught and are under-developed in dealing with such issues. From this series of images, perhaps we can learn to appreciate unconventional beauty in our everyday practices and contact with patients, without which it is difficult to genuinely care for our patients.

More curious was the series Tabula Rasa. This is the theory that individuals are born without built-in mental content and knowledge comes from experience and perception, in a sense, the age-old nurture versus nature debate. In this series, polygonal shapes are cut out of pictures; in a picture with a man talking to another two, the heads of the two people are cut out in the polygonal shape, likewise with a picture of a man talking to a woman. The obvious suggestion is the concept of a clean slate when meeting another person, which is analogous in a medical context to every new consultation and patient. Without any details of the entire heads of these people in the pictures, the viewer is left to perceive the faces of these people, as if making heavy use of Gestalt's theories of perception, a psychological concept of visual recognition and interpretation. Too often, medical professionals have preconceptions of patients based on what they look like when they first step into the consultation room. These often then colour our perception of the cultural and societal status of the said patient, and alters the way we think of differential diagnoses, or in private healthcare systems, whether they are even offered more expensive drugs and therapies (I'm drawing this on friends' experiences in other countries). To take patient-centred care seriously then, we should perhaps train ourselves to rely less on visual judgement of people, favouring a more "tabula rasa" approach to patient contact and the doctor-patient relationship. Only then can we start to attempt to actually be non-judgemental and compassionate doctors.

Stezaker's collection in the Whitechapel Gallery challenges our perceptions of beauty and judgements of others, and its concepts may extend well into the medical sphere. There were plenty of ideas and interpretations within the group of medical students who went to the exhibition, and these are just a selection of some of them (mostly my own interpretation and experience).

*All pictures copyright of John Stezaker. Used here only as example illustration.*

Health, Illness and Ethnicity conference

Two-day Conference: ‘Health, Illness and Ethnicity: Migration, Discrimination and Social Dislocation’

Centre for the History of Medicine in Ireland, University College Dublin, 10-11 June 2011

Organisers Catherine Cox (University College Dublin), Hilary Marland (University of Warwick) and Sarah York (University College Dublin and University of Warwick).

This two-day Wellcome Trust funded conference will focus on the relationship between illness and migration, discrimination and social dislocation. By migration, we refer to both migration between countries and internal movements of populations, for example between regions or from rural to urban areas. Our focus is primarily on the nineteenth and early twentieth centuries, but we are also interested in exploring the relationship between historical concerns surrounding health and ethnicity and current health practice and policy. The workshop is intended to contribute to debates on the susceptibility of specific groups to medical interventions, as well as interpretations of the relationship between health and illness, migration and ethnicity, and the management of the health and illness of ethnic groups within broader health and welfare strategies. The workshop will explore the experiences of particular groups, be these ‘foreigners’, migratory peoples, patients of varied religious denominations and those suffering from particular disorders or diseases. Participants will include keynote speaker Alison Bashford, Roberta Bivins, Kat Foxhall, Alan Ingram and John Welshman. The conference will also provide the organisers with an opportunity to present on their project on ‘Madness, Migration and the Irish in Lancashire, c.1850-1921’ (funded by the Wellcome Trust). We are keen to involve a mix of early career and established scholars, historians and academics from a broad range of disciplines, policy makers and practitioners in the conference.

We request that titles and abstracts for the conference be submitted by 1 March 2011. Abstracts should be c 500 words and include a title and summary of the paper, as well as details of the address, email and telephone numbers of the speaker(s). The workshop will be held at University College Dublin. Local costs for hotel accommodation (2 nights) and meals will be covered by the organisers, but we ask participants, where possible, to cover the costs of their travel to Dublin drawing on their own institutional resources. Modest funds may be available to cover the travel costs of speakers lacking institutional support.

Please contact either Catherine Cox or Sarah York for further information.

Comics & Medicine: The Sequential Art of Illness

Comics & Medicine: The Sequential Art of Illness conference

9-11 June 2011
Northwestern University Feinberg School of Medicine
Chicago, Illinois

This second international interdisciplinary conference* aims to explore the past, present, and possible future of comics in the context of the healthcare experience. Programs in medical humanities have long touted the benefits of reading literature and studying visual art in the medical setting, but the use of comics in healthcare practice and education is relatively new. The melding of text and image has much to offer all members of the healthcare team, including patients and families. As such, a subgenre of graphic narrative known as graphic medicine is emerging as a field of interest to both scholars and creators of comics.

We are pleased to confirm two important keynote speakers: David Small, author of 'Stitches' and Phoebe Gloeckner, author of 'A Child's Life'.

We invite proposals for scholarly papers (15 minutes), poster presentations, and panel discussions (60 minutes), focused on medicine and comics in any form (e.g., graphic novels, comic strips, graphic pathographies, manga, and/or web comics) on the following—and
related—topics:

• graphic pathographies of illness and disability
• the use of comics in medical education
• the use of comics in patient care
• the interface of graphic medicine and other visual arts in popular culture
• ethical implications for using comics to educate the public
• ethical implications of patient representation in comics by
• healthcare providers
• trends in international use of comics in healthcare settings
• the role of comics in provider/patient communication
• comics as a virtual support group for patients and caregivers
• the use of comics in bioethics discussions and education

We also welcome workshops (120 minutes) by creators of comics on the process, rationale, methods, and general theories behind the use of comics to explore medical themes. These are intended to be “hands-on” interactive workshops for participants who wish to obtain particular
skills with regard to the creation or teaching about comics in the medical context.

We envision this gathering as a collaboration among humanities scholars, comics scholars, comics creators, healthcare professionals, and comics enthusiasts.

300 word proposals should be submitted by Friday, 28 February 2011 to submissions@graphicmedicine.org. Proposals may be in Word, WordPerfect, or RTF formats with the following information and in this order: author(s), affiliation, email address, title of abstract, body of abstract. Please identify your presentation preference: 1) oral presentation; 2) poster presentation; 3) panel discussion; or 4) workshop. While we cannot guarantee that presenters will receive their first choice, we will attempt to honor people’s preferences,
and we will acknowledge the receipt of all proposals submitted. Abstracts will be peer-reviewed by an interdisciplinary selection committee. Notification of acceptance or rejection will be completed by 14 March 2011.

This event is co-sponsored by the Medical Humanities and Bioethics Program at Northwestern University Feinberg School of Medicine, the Department of Humanities at Penn State College of Medicine, and the Science, Technology and Society Program of Penn State University, and
is supported by a grant from the Charles Schulz Foundation.

*Information about the 2010 conference, “Comics and Medicine: Medical Narrative in Graphic Novels,” in London, England can be found at www.graphicmedicine.org.

Poetry in spam

As spam detection for blogs gets more sophisticated, some companies have taken to employing individuals to write realistic looking comments on blog postings, with a link to their business, embedded in it somewhere. I spend more time deleting spam than writing postings. But a spam comment cropped up this week which I feel qualifies as 'found poetry'. The formatting is mine, but the words are attributable to one Rizwan Ali, whom I hope is earning a living wage (or should that be 'learning a waving age') from the essay mill that employs him. I particularly like the 'endearing play' (which Wit undoubtedly is).

Medical conference mash-up

The conference will be supported by a rumor
at the British Museum in the fields
of the humanities and medicine, which explore
representations of, and the American TV
drama based on the Pulitzer Prize-endearing play
by Margaret Edson,
directed by Nike Nichols and
the Kent, Surrey and Sussex Medical Deanery.

It takes part over two living –
Saturday and Sunday 2nd-3rd July 2011.
Refreshmeents and lunches are welcome.

The conference is the answer
of three speakers are provided,
and there will be followed
in the daylight
by an exhibition, which will contain
books, tune, and visual art,
which explore any feature of
communication,
style,
narrative, and
representation
in relative to

illness and sorrow.

Sew intriguing

The artist Andrea Dezsö's artworks are just gorgeous. You can see more of her work here. The series of embroided 'homilies' from the series 'Lessons from my mother' are hard hitting.