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.*