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Romanticizing Tubercolosis

21 Mar, 17 | by amcfarlane

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

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

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

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

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

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

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

New Blog Curator and Reviews Editor

14 Mar, 17 | by amcfarlane

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

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

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

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

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

Book Review: The Mystery of Being Human

10 Mar, 17 | by cquigley

 

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

 

Reviewed by Dr Sara Booth

 

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

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

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

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

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

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

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

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

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

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

9 Mar, 17 | by cquigley

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

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

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

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

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

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

Observe the wonderful machine,

View its connection with each part,

Thus furnish’d by the hand unseen,

How far surpassing human art! (p. 29)

 

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

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

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

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

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

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

Book Review: Illness as Many Narratives

7 Mar, 17 | by cquigley

 

Illness as Many Narratives: Arts, Medicine and Culture

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

 

Reviewed by Birgit Bunzel Linder

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

London Human Rights Watch Film Festival

6 Mar, 17 | by cquigley

 

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

https://ff.hrw.org/london

Introduction by Khalid Ali, Screening room editor

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

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

Here is an introduction form the festival team:

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

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

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

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

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

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

The Human Rights Watch Film Festival Team

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

Recommended reading

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

Address for correspondence

Khalid.ali@bsuh.nhs.uk

Book Review: The Snake in the Clinic

28 Feb, 17 | by cquigley

 

Guy Dargert, The Snake in the Clinic: Psychotherapy’s Role in Medicine and Healing. London: Karnac, 2016

 

Reviewed by Dr Jane Slater

 

The best review of a book is unlikely to be written by an enthusiast, so I need to confess upfront that this book blew me away. The first time I read it, I entertained passersby with involuntary exclamations of “ Yes” and “ That’s SO true”, and even on one sublime paragraph, “ Go Guy”. Thus, my first task was to rein in my paeans of praise and attempt to be objective.

In titling the book The Snake in the Clinic, Dargert refers to the snake coiled around the staff of Aesclepius, the god of healing, a symbol used by the British Medical Association. The book reminds us that in the age of the serum rhubarb, scans for everything and a pill for every ill, we forget at our peril the crucial role of simply understanding what an illness is doing for us. The wisdom of the ancients deserves review and benefits our patients and ourselves, cutting through the fog of technology into which modern medicine risks becoming lost.

The Snake in the Clinic is an overview of the art of healing, bringing together strands of orthodox clinical medicine (p.45, illness being the opposite of health) with various psychotherapeutic philosophies, and interweaving them with ancient understanding of the purpose of illness (p.142, dancing with illness). Indeed, the whole premise of the book is to re-jig our concept of illness from something to be avoided and fought (p.40, the War on Cancer) to a gift: the illness itself can bring an opportunity to heal or make whole some broken area within us (p.46, Jung’s thoughts). Dargert even takes us to the ultimate with his question, “Can there be a healthy death?” (to which the  medic’ asked responded, “A young fit man in an RTA?”). Along with all GPs, I have been privileged to have seen many a ‘healthy death’ over the course of my career – patients wholly at peace with themselves at the end.

Dargert questions our very concept of illness and wellness, contrasting the WHO definition of health as an absence of disease with the idea of health as a state of equilibrium, a balance between so many factors in our lives that are at odds with one another: the pressure to conform and to live up to expectations versus the wild spirit wishing a different path. He gives numerous examples from patient encounters to illustrate his points, which was valuable in cementing my understanding of sometimes alien ideas.

Dargert draws on Taoist, Buddhist, tribal religions and the concept of the Daimon (so well realised by Phillip Pullman in his Northern Lights trilogy as the connection between the physical body, mind and spirit) to exemplify his holistic approach. There are also explorations of dream material as a bridge to the unconscious,  holding vital keys to those physical and psychological problems seeking solutions.

He is unafraid to quote his detractors, such as Susan Sontag’s rant against the use of psychotherapy in the treatment of cancer, though hers seemed a misplaced criticism of what psychotherapy could achieve: it seeks not to get rid of the disease or symptom, but to understand what it may offer, and through this understanding find an acceptance and an ability to fully live despite the condition. Whilst encouraging the use of all available therapies and not abjuring the more physical medical approach, Dargert rather seeks to balance and complete the process of achieving wellness by simultaneously exploring the effects of the dis-ease on the soul or psyche. If ever I were to need the aid of an oncologist, I hope to find a Guy Dargert character in the wings helping me to interpret and make sense of what it all means to me and my life. We’re around for so short a time, it behoves us all to be proactive in looking for meaning for ourselves and our patients before our little lights are snuffed  out.

To combine erudition with readability is a skill indeed, and Dargert displays both with humour and an infectious sense of questing which comes only from a therapist and pedagogue brimming with life. It is well researched, engagingly composed, and absorbing. I would love this book to be a set text for GP registrars, and indeed would commend it both to those in the business of healing and those requiring of the same.

My only criticism is that I couldn’t find it as an audio book – listening in the car between visits and clinics is one of the few “ breaks” one has these days. But it is a good bedtime read also.

Who knows what you might dream…

The European Doctors Orchestra and the Irish Medical Choir

24 Feb, 17 | by cquigley

 

Professor Des O’Neill

One of the pleasures of medicine is the frequent sense of a shared vision of how enmeshed it is with the humanities. As a group, doctors tend to have a high level of cultural engagement: for example, our own studies show that over 50% of medical students play, or have played an instrument http://mh.bmj.com/content/42/2/109.long.  Yet we rarely celebrate our cultural participation in a collegial manner, and perhaps it is time that we more openly acknowledged this shared portal to the bigger picture in life and medicine.

These elements came to life vividly at a remarkable workshop in Belfast in early February for the nascent Irish Medical Choir. It arose because the very talented European Doctors Orchestra https://www.europeandoctorsorchestra.com/ has decided to scale new heights with a concert in Belfast in November featuring Mahler’s mighty 2nd symphony, the Resurrection Symphony https://www.europeandoctorsorchestra.com/next-concerts/.

As the work has an extensive choral finale (as well as the chill-inducing Urlicht in the fourth movement http://onlinelibrary.wiley.com/doi/10.1196/annals.1360.041/abstract ), a bright idea was to recruit a chorus drawn from medical practitioners and students across the island of Ireland.

The take-up has been fantastic, with a waiting list of highly qualified sopranos and altos, albeit some space yet for tenors, a constant for choral societies around the world! The introductory workshop was an intense pleasure at many levels, with virtually all specialties represented, and ranging from medical students to those retired for many years, a very intergenerational project.

Having expected a direct exposure to the Mahler, we were initially surprised by the list of works provided by the expert and engaging choir master, Brian MacKay http://www.zezerearts.com/brian-mackay-artistic-director. In the event it was a brilliantly constructed voyage around Mahler, proving as ever that the elliptical beats the direct approach every time.

Our choral journey allowed us to engage with historical and contemporary contexts for Mahler’s music, preparing the soil for future rehearsals. The first work was an eighteenth century hymn by Graun based on a Klopstock poem on the resurrection. It is this piece, played at the funeral of the celebrated conductor Han von Bülow, which inspired Mahler to use the poem in the symphony and it was both simple and affecting.

A perspective of late-romantic German choral music was provided by Josef Rheinberger’s Abendlied, a truly beautiful piece which was a fantastic discovery for most of us (and do watch out for his (and Reger’s) brilliant re-working of the Goldberg Variations for piano four-hands http://www.tal-groethuysen.de/cds/bach-goldberg-variations.html!).

We then immersed ourselves in another avenue of spiritual music, the potent and deep Rejoice, O Virgin, from Rachmaninov’s Vespers. It was a visceral shock to be a part of this extraordinary music, a further intensification of the feelings arising from my recent exploration of choral singing http://blogs.bmj.com/bmj/2017/01/03/desmond-oneill-singing-in-the-new-year/.

Friendships and connections were forged over lunch, and I was in awe at the wide range of pursuits and achievements of those present, and sense of shared pleasure and purpose.  After some business arrangements for upcoming rehearsals, we then sight read twice through the first movement of Brahms German Requiem, further extending our aesthetic, communal, pleasurable and spiritual journey.

For a group dealing with illness and death throughout our working lives, there is something extraordinary reassuring and quietly energizing about this participation in music probing mortality, resurrection and a deep sense of consolation. All of these composers had more extensive personal exposure to death than we do http://blogs.bmj.com/bmj/2011/05/24/des-oneill-death-and-transfiguration/ and their music provides an extra layer of opportunities to see the bigger picture, echoing and providing a more positive spin to Milan Kundera’s dictum that all we can do in the face of that ineluctable defeat called life is to try to understand it.

The coda to the meeting was a clear desire to continue an Irish Medical Choir after the Mahler, a testament to the organizers, our choir master, and those positive elements in medical life which make it such an interesting and satisfying career. If you are a Mahler fan, do consider joining us in the Ulster Hall on Sunday, the 26th of November: all proceeds will go to music and health charities.

 

Des O’Neill is a professor of geriatric medicine and co-chair of the Medical and Health Humanities Initiative at Trinity College Dublin https://www.tcd.ie/trinitylongroomhub/medical-humanities/

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

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