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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.

Film Review: Dubai International Film Festival

2 Jan, 17 | by cquigley

United by film in United Arab Emirates

An overview of Dubai International Film Festival (DIFF), 7-14th December 2016, https://dubaifilmfest.com/en/page/223/diff16.html

Dr Khalid Ali, Screening room editor

Cinema can be a contemporary mirror of our society as film-makers tell their stories reflecting on universal political, social, and economic challenges. Health and well-being were prominent themes in the panorama of world cinema in Dubai International Film Festival (DIFF) 2016 which screened 156 films from 57 countries.

For a geriatrician, I was immediately drawn to films which explored the world of old people amongst their families and carers in their colourful but harsh realities; ‘104 wrinkles’ (Lebanon, 2016, Hady Zaccak) is a sensitive documentary where the director Zaccak follows his grandmother Henriette for 26 years, observing her physical and cognitive decline, but also celebrating the bonds of love and filial duty in caring for her. ‘We are just fine like this’ (Tunisia, 2016, Mehdi M. Barsaoui) is a playful short film about an old man struggling with the advance of dementia, and his grandson’s mischief. Two elderly women facing cruel nature, climate change and a dwindling economy trying to earn a living by collecting honey was the subject of ‘Honey, rain and dust’ (United Arab Emirates, 2016, Nujoom Alghanem).

Mental health featured highly in DIFF and the awards category: ‘Mamsous- Deranged’ (United Arab Emirates, Kingdom of Saudi Arabia, 2016, Shatha Masoud) followed three patients struggling with anxiety, depression, side effects of medications, and the stigma of mental illness. In view of its authentic portrayal of real patients and imaginative narrative style, the film was awarded the best short film award. ‘Like crazy’ (Italy, France, 2016, Paolo Virzi) is an elegantly told humorous road journey, Thelma and Louise style, of two female patients running away from a mental institution. Auditory hallucinations, bereavement, loss and friendship of two mentally ill men seeking cure in another road journey formed the background story of ‘Ali, the goat and Ibrahim’ (Egypt, UAE, France, and Qatar, 2016, Sherif El Bendary) which earned its leading character Ali (Ali Sobhi) the best actor award. Domestic violence and long-lasting psychological trauma experienced by children were sensitively handled in ‘Animal- Hayawan’ (UAE, 2016, Nayla Al Khaja).

The year 2016 was notable for films made by women exploring women’s issues worldwide; DIFF was no exception in focussing on the feminine agenda; ‘Miss Sloane’ the opening night film (USA, 2016, John Madden) had ‘Jessica Chastain’ as the determined woman of the title lobbying for strict laws on gun acquisition in the USA. Two more American films delved into women’s psyche; ‘Certain women’ (USA, 2016, Kelly Reichardt), and ‘20th century women’ (USA, 2016, Mike Mills).  Similarly Arab cinema shone a spotlight on women’s trials and tribulations in a male-dominated world: ‘A day for women’ (Egypt, 2016, Kamla Abu Zekry) followed a group of ladies who come together in a public swimming pool one day a week dedicated to women only, and ‘One week, two days’ (Egypt, Sudan, 2016, Marwa Zein) which dissected the problem of primary infertility.

The global threat of rising extremism was analysed in ‘Mawlana- The preacher’ (Egypt, 2016, Magdy Ahmed Ali), and ‘Layla M’ (Netherlands, Belgium, Germany and Jordan, 2016, Mikje De Jong).

Tolerance, empathy, and understanding different cultures in a global dimension were discussed in ‘Foreign body’ (France, Tunisia, 2016, Raja Amari), ‘Zainab hates the snow’ (Tunisia, France, Qatar, Lebanon and UAE, 2016, Kouther Ben Hania), ‘Solitaire- Mahbas’ (Jordan, Lebanon and Egypt, 2016, Sophie Boutros), ‘The choice’ (UAE, 2016, Eman Alsayed), and ‘Lisa’ (UAE, 2016, Ahmed Zain).

The festival audience award went to ‘Heartstrings’ (France, 2016, Michel Boujenah) which told the story of a 12 year old girl losing her eyesight to progressive macular degeneration and how her passion for music, and empathy and compassion from a school friend restored her well-being.

Lenny Abrahamson (Oscar nominated director, https://en.wikipedia.org/wiki/Lenny_Abrahamson ) in conversation with William Mullally gave a moving account of his approach to marginalised characters in society, and the importance of empathy, listening and understanding in storytelling.

Over the course of 2017, I will be sharing with the ‘Screening room’ readers, and ‘Medical Humanities online podcast’ listeners’ DIFF film reviews, and interviews with Hady Zaccak (director of 104 wrinkles), and Ahmed Magdy (actor in ‘Ali, the goat and Ibrahim’ and ‘Mawlana- The preacher’), and highlights from Lenny Abrahamson’s conversation. In a new section ‘Talk to her’, I will be posting discussions with emerging women directors from the Arab world: Shatha Masoud (director of ‘Mamsous- Deranged’, Nayla Al Khaja (director of ‘Animal- Hayawan’), and Marwa Zein (director of ‘One week, two days’).

Brecht once said ‘Art is not a mirror with which to reflect reality, but a hammer with which to shape it’. The same notion applies to film as a force for education and change.

Wishing you all a very happy New Year.

Address for correspondence: Khalid.ali@bsuh.nhs.uk

 

image1

Hady Zaccak – director of ‘104 wrinkles’ – talks to Khalid Ali

 

image2

Masoud Amralla Al Ali (artistic director of DIFF) with Khalid Ali – opening night of DIFF

 

image3

Lenny Abrahamson talks to William Mullally 

diff-image-4

Madgy Ahmed Ali, Dora, Ahmed Madgy and Reham Haggag – film director and cast of ‘Mawlana: The Preacher’ 

Institute of Medical Ethics Conference 2017: Call for Papers

19 Dec, 16 | by cquigley

4th IME Summer Conference, June 2017

 

Building on the success of three previous conferences held in Edinburgh, Newcastle and London, the 4th Institute of Medical Ethics (IME) Summer Conference will take place on the 15th and 16th of June in Liverpool. Two changes have been made to the conference format for 2017. First, the Research Committee will accept proposals for both individual papers as well as for panels. The latter will be allocated 75mins and the time can be used for traditional presentations of 15-20 mins or for more collaborative and discursive interactions. Second, there is a specific call for contributions from the medical humanities. The IME’s Research Committee hopes to include a stream of medical humanities papers across both days of the conference.

Confirmed Keynote Speakers are Prof Rosamund Scott (KCL) and Prof. Stephen Wilkinson (Lancaster).

Further information can be found here: http://ime.datawareonline.co.uk/Event-Booking/EventId/1023 and both the IME (@IMEweb) and various members of the IME’s Research Committee can be found on twitter if you want to get in touch.

Finally, the location and date of this year’s conference have been coordinated with the annual conference of the UK Clinical Ethics Network (UKCEN). Themed ‘Family Matters’ this will be their 17th Annual Conference. It takes place on the 14th June 2017 and there will be a short IME/ UKCEN crossover session on the morning of the 15th. For further details about UKCEN’s conference see: http://www.ukcen.net/

 

Film Review: Dear Zindagi

14 Dec, 16 | by cquigley

 

Julia Roberts meets Sigmund Freud in Goa: A review of Dear Zindagi, directed by Gauri Shinde, India 2016, 4*

Currently in general release in UK cinemas 

Reviewed by Dr Khalid Ali, Screening room editor

Bollywood cinema has secured its international box-office appeal with a well known formula of combining action, melodrama, song, and dance in one film. Indian director Gauri Shinde adapts this winning formula in her new film Dear Zindagi- Deal life, but adds a contemporary message of exploring serious subjects namely the stigma of mental illness, doctor-patient relationships, and the role of mindfulness in well-being.

A recent prevalence study published in the Lancet Psychiatry showed that 4.7% of Indian women suffer from a major depressive illness, and 4.1% suffer from anxiety disorder (Baxter AJ, et al., 2016). In addition the magnitude of mental disorders is expected to increase by 23% in India by 2025, warranting an urgent need for a co-ordinated program of prevention, early diagnosis and effective management (Charlson FJ, et al., 2016).

Kaira (Alia Bhatt) is a young beautiful cinematographer who has it all; beauty, brains, and wealth. However an unexpected series of personal and professional failures put a halt to her thriving career. In a story line reminiscent of Julia Roberts’ travels to India in the Eat Pray Love 2010 film (https://en.wikipedia.org/wiki/Eat_Pray_Love), Kaira relocates back to her parents’ home in Goa in an attempt to make sense of the meaning of life and relationships. Insomnia and family pressure to find a husband drive Kaira to suffer from anxiety and possible depression. Ashamed of the stigma of mental illness, she seeks help from a ‘brain doctor’ in secret. Dr Jehangir Khan (Shah Rukh Khan) is a charming clever clinical psychologist whose in-depth analysis of dreams makes him the modern day ‘Sigmund Freud’. The theories of Sigmund Freud relating to the ‘subconscious’ through dream analysis are cleverly illustrated with the ‘brain doctor’ helping Kaira figure out that her suppressed childhood traumas of abandonment maybe the underlying cause for her fear of commitment.

Dr Khan also shares with the young patient his own traumatic experience of choosing clinical psychology as a career to the dismay of his parents. Blurring of the boundaries between patients and health-care professionals in a therapeutic encounter is another topical subject that ‘Dear Zindagi’ shows without any prejudice. Similar themes were explored in films as far back as Alfred Hitchcock’s ‘Spellbound’ 1945 (https://en.wikipedia.org/wiki/Spellbound_(1945_film)), and as recent as Steven Soderbergh’s 2013 film ‘Side effects’ (https://en.wikipedia.org/wiki/Side_Effects_(2013_film)).

Through long probing but friendly sessions of cognitive behavioural therapy (CBT), both clinical psychologist and patient eventually come to terms with their hidden demons. In revisiting happy childhood memories, and connecting with nature, they practise ‘mindfulness’ as a way out of their unhappiness.

It is refreshing to find a Bollywood film with a charming lead actress, Alia Bhatt in a career defining role that could easily land her the title of ‘India’s Julia Roberts’, that still manages to discuss serious subjects of mental illness and stigma, and simplifies without trivializing the benefits of ‘talking therapy’ and ‘mindfulness’.

See trailer here.

© Disney Entertainment, UK. All rights reserved

References

  1. Baxter AJ, Charlson FJ, Cheng HG, et al 2016. Prevalence of mental, neurological, and substance use disorders in China and India: a systematic review. Lancet Psychiatry 3 (9): 832-41.
  2. Charlson FJ, Baxter AJ, Cheng HG, et al 2016. The burden of mental, neurological, and substance use disorders in China and India: a systematic analysis of community representative epidemiological studies. Lancet 388 (10042): 376-89.

Address for correspondence: khalid.ali@bsuh.nhs.uk

Global Humanities: Talking Taboo

12 Dec, 16 | by cquigley

When Talking is Taboo

by Ayesha Ahmad

 

In this piece, I want to talk about what it was like to be a panellist at a recent event strategically entitled “Talking Taboo” at the School of Oriental and African Studies.

I spoke for ten minutes; ten minutes that represented a life time.

I began the introduction to my research on investigating trauma therapeutic interventions using traditional story-telling for gender-based violence related trauma with a few scribbles of notes in front of me about mental health, conflict, culture, and violence. I do not usually take a script for my talks; I want to communicate and convey with authenticity and I can only reach this in the present moment. But for this talk I made key points to reduce my words into points, and my points into a skeleton for the much larger body of work I was representing.

However, just after I began to speak something stopped me in my tracks. I became acutely aware that I, myself, was talking as a woman with all the identities that my freedom beholds, in a public space that was being shared across the globe by a live-streamed video, which at one point reached over 1000 viewers.

I sat next to three other panellists, all of whom were there with their lifetimes, at a table used for the education of students from all genders, ethnicities, religions, geographies, languages, and histories, with their greatest teacher being that of equality.

We were all carrying our convictions, the motivations that took us through each day and into an audience that the very faces of those we cannot forget could never be a part of. We were there as the embodied memories of women who now were buried.

I saw that table as a grave. I felt like my blood was alive and speaking the words that others had bled.

As my words started to take flight I suddenly became acutely conscious of my voice. I was speaking and being listened to. I was heard. My voice was not silent. My words were alive.

I remember looking around the room as I reflected on my realisation; on how we were gathered to talk about the taboos enwrapped in a knot of culture and tradition and religion, and to unpick these meant being vulnerable to our own lives, and being open to our bodies and minds being unravelled and deconstructed.

I invited the audience to reflect on the act of a woman talking as being taboo.

The room echoed with murmurs of “yes” and as I looked around and saw woman after woman nodding their heads, both those in cloth and without cloth, I stayed silent for a moment.

The silence was full; it was full with a book of lived experiences; the pages of which were present in the eyes that I saw as I tried to find my narrative again.

Taboos mean that there are words unspoken, stories that are marginalised and symbolise injustice and violation. A story, though, is an exchange of your world with mine. There is a landscape of the mind in the way we critique our lives.

When I spoke of the taboo of talking, my talk became a story.

As an academic I present in conferences and universities and hospitals all around the world.

Yet, in that moment so many stories embraced the space surrounding me. I was in a lecture theatre in a London university, yet a different landscape emerged that was so different from anywhere that I had spoken before.

My words reached a silence; a silence that had been forced. When we cannot talk, our words become buried. Words, when they are buried, gain an illusion of absence, but they are not absent. They are present as heavy as the soil beneath the ground. Our buried stories are our land. To talk, then, is to have ownership of our territory.

I consider there to be two injustices at play. The first is when the ways we can talk become acts that lead to persecution. Banning education for girls, prohibiting women from reciting poetry, restricting public places for women to converse, censoring publications of women’s sufferings are forms of genocide—a genocide of creativity, of stories, and ultimately of lives.

The other is to reduce silenced women as being voiceless. I consider the rhetoric of giving voice to the voiceless as perverse. Voices may be silenced, but never absent. Even in the act of silencing, the story remains. Being silent is not being story-less.

Talking as a taboo means that the modes and narratives for talking are taken away. Talking about a silenced woman as voiceless is taking her voice away.

I continued my talk but I felt that the story had been told. I was presenting on story-telling but to an audience of the greatest story-thinkers.

Culture becomes strong when concepts are part of societal structures. Thus, stories, and poems, and songs, are still surviving through conflicts and migration and changing generations.

The taboos though are not cultural elements; these taboos are the modes of weakening a culture as they cause the telling of a story to decay. The memory of who you are will never be passed on.

As I listened to the other panellists and the songs that followed, it became clear that this event was a unique and special space for creating a legacy.

There was hope; hope that talking taboos leads to telling truths. There was conviction that telling truths tackles taboos. There was indeed, danger, as well. The continuation of violence against women; their concepts, bodies, minds, beliefs, words, stories–and ultimately the voice of the woman was being threatened by the dismantling of silencing.

During that night, I witnessed true bravery, and genuineness of the human spirit and strength.

The ground beneath us becomes even more solid when we are standing on the bodies of the women who were killed before they told their story. These stories become the land before us; the soil is a book and we will keep walking until our steps have told every taboo.

I commend the organisers, the participants, the audience and even the individuals who could not bear the weight of the truth of talking taboos being brought into an academic space by women who are free to be educated and to talk. And, that night, we talked. We talked and through our words, we tackled taboo.

 

Link to the video of Talking Taboo: https://www.facebook.com/SOASAfghanSociety/videos/921284864673254/?hc_ref=PAGES_TIMELINE

Politics and Medicine

9 Dec, 16 | by cquigley

Clinicians should understand how they can use the ballot box to advance their patients’ health interests.

Jacob King, Deniz Kaya

Medical Students, Peninsula College of Medicine and Dentistry

 

As a health professional working in a sterile environment one might easily find themselves feeling disparately removed from the slimy world of politics. But sadly we believe that this separation of clinic and state denies the measurable effects they have upon each other. Environmental public health acts, improving access to medical coverage, and taxes on ‘bad behaviours’ have all been platforms for political campaigns, each subsequently having shown powerful health benefits.

We have a duty to patient wellbeing, and some argue that this extends to advising or lobbying government. But in light of recent major democratic exercises, including the EU referendum and junior doctors’ contract votes here in the UK, and the upcoming Trump presidency, the ballot box can frequently become a vessel for enacting changes for patient health. Unfortunately, we fear that health professionals are missing out on this key opportunity to address their patient’s wellbeing from an entirely new angle, one normally out of reach for the individual clinician. In the only study of its kind Grande et al. show that US physicians were significantly less likely to vote than the general public [1]. They suggest that medical training may lead physicians to perceive voting as in conflict with their professional duties. Anecdotally, among our colleagues, we also find disillusionment with the political system, limited understanding of legislative processes and little appreciation of health and social policy impact. The GMC’s ‘Tomorrow’s Doctors’ sets the framework of a medical school curriculum, and simply requires students to “discuss the principles underlying the development of health and health service policy” [2]. This limited criterion for health policy teaching, we believe, fails to adequately prepare health professionals. It follows that if greater awareness was fostered toward the impact and variety of health policy options, health professionals could more readily be able to advance patient health by means of their vote. Supplementary teaching of political systems and health policy could be incorporated into a medical curriculum which recognizes the importance of political decision in healthcare. Initially teaching politics effectively may seem implausible. Yet we have experience of teaching, and being taught medical ethics quite successfully without running into contentious arguments, cries of bias or questioning of practical use. We see no reason why politics should be any different.

There is a broader point here, however. Just as this blog routinely demonstrates, the role that accepting humanities topics (sociology, art, music, anthropology, religious and cultural studies et cetera) into medicine has progresses hidden and tangible clinical benefits – we claim that political science possesses similar potential. “A physician is obligated to consider more than a diseased organ, more even than the whole man, he must view the man in his world.” (-Dr Harvey Cushing). Small “p” politics by any definition must also fall into the category of humanities, concerned with forms of individual thought and behaviour, power structures, interpersonal relations, as a cousin of sociology, psychology and anthropology. But while earlier we suggested that at least some measure of political science education for health professionals might theoretically improve our voting rates, fuel broader discussion of health and social policy or directly lead to effective health outcomes via the ballot box, the hidden side of recognising political belief in oneself and our patients may also (akin to its humanities cousins) result in a greater appreciation of the man in his world.

In this light we wish to make the case that political awareness will on one hand prime clinicians to appreciate on a different level the background and health beliefs of their patients, and on the other, confer a greater idea how voting one way or another may play a role in improving health and wellbeing.

Whether one ultimately does vote in what they deem to be in their patient’s best interests is a personal matter. Individuals of course have other motivations on which to base their decisions. However we reasonably believe that health professionals should have the opportunity, foundation knowledge and confidence to enact change via the ballot if they wish to do so.

 

References

  1. Grande D, Asch DA, Armstrong K. Do doctors vote? J Gen Intern Med, 2007;22(5): 585–589.
  1. General Medical Council. Tomorrow’s Doctors: Outcomes and standards for undergraduate medical education. 2009.

 

Global Humanities: On Being Invisible

8 Dec, 16 | by cquigley

 

Ines Ongenda – A Personal Reflection

 

In September 2015 I started a Master of Science in Global Health and Development at a leading UK institution. My background was in biological sciences and I was your typical aspiring medical doctor who had a strong interest in global health and wanted to explore and learn more about the field and whether I could fit in there.

Two weeks in and I wanted to quit the programme. I felt inadequate, ignorant and with nothing to bring to the table. Nothing to say. Nothing to share. Nothing to give. I was embraced by a group of African students who were all brilliant and experienced. Those were individuals who not only walk the talk but were grasping this opportunity with both hands. It was humbling. Not only because it was my first time studying with so many people from my continent but also with many from different countries within it. They were my rock and nudged me to stay and to make the most of this opportunity. I am not sure I did, but I recently completed my degree.

At the time, when I looked around me, the cohort was incredibly diverse: people with different nationalities, different languages, different religions, and different professionals at different stages in their careers etc., but very few felt like frauds. From those I approached, there was excitement and awe, people being inspired by their fellow students, people eager to grasp that different perspectives and people eager to share their own, to confront their ideas.

I looked at other students who “only” held bachelor degrees and came straight from those undergraduate studies, like I did. I talked to them to understand their position and very few echoes my sentiments. At that time, I did not think much of it. I felt like a fraud, I did not want to talk during lectures or tutorials. I wanted to be one with the walls and be invisible. It was something that had always been true in my upbringing as a daughter of a Congolese (DRC) father and a Burundian mother. I was taught to not make waves. I was told to always be very discrete. This was in sharp contrast to those from other nationalities. Most Americans students were bold and outspoken, happy to share their opinion, unapologetic in their way of presenting themselves and their ideas. The first few weeks, they truly dominated the narrative.

Only recently have I been interested in asking myself: why? Why is it that my upbringing does not foster that confidence? Why is it that the cultures I grew up in do not reward that free spiritedness I encountered in my Americans counterpart? I specifically do not want to make a generalisation to the entire continent. As we were often joking with other members of the diaspora, Africa is a continent not a country, there is no one Africa. My experience as a half Congolese, half Burundian former political refugee partly raised in France is of course different from that of a Yoruba from Nigeria.

To answer those questions, one of the components could be religion, or should I say superstition. In my culture, one does not make himself known/seen too much because one must fear jealousy, and gossip. One does not want his life spread out in front of others and risk spoiling it. What is the link with Global Health? I was not supposed to share my opinion as it might attract ridicule. What if people questioned my legitimacy? After all, I was just at 24-year-old who flew from genocide in Burundi as a small child. What does she know? What is her authority in these matters? This crucial idea of legitimacy. This idea that only people with a vast amount of experience, people who are legitimate due to their achievements, can speak out loud. The idea that only the one who “knows” can talk probably hindered my ability to learn. This led me to dismiss my own opinions, my own ideas. I took it as a given that they knew what was right and that I was as a result wrong in my own thoughts and views. My opinion was not valid because I did not have that a true global health background.

As the year progressed and I was ready to work on my thesis, I truly went against a wall. Every idea that I dismissed where the ones that my supervisor nudged me to stick with. Any opinions, any criticism that I had, I had to develop and research. It started to weigh on me that I was the only mixed Congolese and Burundian of my program. I was the only one able to share my perspective and to tell my story. I was the only ‘me’.

Global Health Humanities to me is about my coming into my own truth. It is about respecting my origins and looking at them as an asset and not as a point to dismiss because it is not the ‘right’ background. Global Health Humanities is about exploring my own humanity, my own identity in order to better raise my voice, and thus carry the torch for sharing this story, ultimately our story. Global Health Humanities represents a window that will serve to ensure that we no longer need to be ‘mindful’ of other cultures, but can instead truly integrate those cultures and facilitate an authentic sharing of stories.

This process is ongoing, and progress is being made – there are increasing opportunities for sharing stories through art (from writers to musicians and filmmakers), through the businesses that are being created from fashion brands to travel companies to magazines and healthcare startups), and through research.

Africa is rising.

Film review: Mannequin

7 Dec, 16 | by cquigley

image1

 

The Banality of Evil – Review of Mannequin, Egypt, 2015, directed by Dr Mina Elnaggar

 

Reviewed by Professor Robert Abrams, Weill Cornell Medical College, New York

 

Mannequin is a short, terrifying film with ambitions as large as its 7-minute running time is brief. The action starts immediately: An unnamed man who must have his wife’s dress retailored as a birthday gift has evidently placed an advert for a seamstress. When Mofida, the young woman who has responded to his advert, arrives at his home, he starts behaving oddly. The mood turns voyeuristic and sinister when he begins to make demands of her, including that she must wear and model the dress. The viewer now senses that Mofida might be used as an alter ego for the man’s wife, an inert substitute, as if she were indeed a lifeless mannequin. We watch with fascination and fear as an ordinary transaction changes over to the deceitful entrapment of an innocent woman.

Several questions are raised: What circumstances could justify the evil intentions this man appears to harbor? What internal conflict he is attempting to resolve?
The film can be viewed below.

 

Now that some details have been clarified, there is more to consider. We know that there are truths that are so unbearable that outright denial must be marshalled, and often that denial is framed in a uniquely personal way. This man’s wife has presumably been unfaithful, a circumstance he re-enacts by dousing Mofida with men’s cologne when she has put on the dress. Why someone who has been (or believes that he has been) betrayed by his wife chooses a particular style or format of disavowing is the province of psychoanalysis, not elucidated here.

But this is also where Mannequin reaches for a deeper understanding of the nature of vengeance. Although the implications are not immediately apparent, in only a few minutes it becomes clear that this film is depicting a perversion of anger and grief. The director, Mina Elnaggar, seems to grasp that narcissistic rage arises from a perceived threat to the narcissist’s self-worth. In the mainstream psychiatric view, a person with pathological narcissism might experience infidelity as a grave threat to his integrity, reacting with extreme anger or devaluation of the unfaithful partner as a way of avoiding emotional pain (Pincus AL, Lukowitsky MR. Pathological Narcissism and Narcissistic Personality Disorder. Annual Review of Clinical Psychology. April 2010. 6:421-446). Here, in a variant of pathological narcissism, the cuckolded man further engages in a kind of “undoing”, a defensive revision of reality wherein it is no longer his wife who has wronged him, but a randomly found young woman; and while his victim might pay dearly for him being betrayed, the man seeks to avoid suffering himself. Also, in this delusional world, violence against others is acceptable if they are viewed as dehumanized mannequins; but if the mannequins resist, they just might have to be rendered lifeless again.

One of the defining characteristics of adulthood is the ability to distinguish between fantasy and reality. In essence, fantasy is the notion that one can control the world, with no restrictions placed on one’s libidinal urges, but this happens only in psychosis, pathological narcissism, sociopathy, or films.

In Mannequin, the protagonist is in a desperate flight from the immutable reality of whatever his wife has done that has been so damaging to his core identity. What the film does show, as a kind of reward to the viewers for tolerating the convoluted thoughts and images, is that unprocessed narcissistic rage is a zero-sum game, a desperate, losing position that can only enfeeble, rather than strengthen or vindicate the self. The elaborate avoidance of pain leads only to more pain for all concerned.

Mannequin provides a thought-provoking inquiry into a very dark domain. Its central character seizes control over the life of his victim as he cruelly manipulates her, but in fact it is he who is being controlled by unconscious motivations of which he is unlikely to be aware.  From there, it is not a great leap to recognize that vengeance born of narcissistic injury can become murderous, but will still be impotent, whether on an individual or a global scale.  If this man’s denial or undoing—call it what you will– had been satisfying, he would not need to repeat it, a point that is eerily hinted at in the film.  Mannequin, despite its short span and familiar, ordinary setting, manages nothing less than to shock the viewer to a deeper appreciation of the underpinnings of human violence.
Address for correspondence: rabrams@med.cornell.edu

 

 

Interview with Dr Mina Elnaggar- actor, film director and producer

 

image1

 

Can you introduce yourself to the readers?

I am a clinical nutrition specialist, but before that I used to work in the forensic department at MUST University. I worked in several theatre performances inside and outside of Egypt, such as ‘No time for art’ directed by Laila Soliman; in addition to the ‘Cairo trilogy’ with the BBC radio 3 directed by John Dryden; plus some interesting roles in TV and film in Egypt.

What was the reason behind your choice of a mentally-disturbed person as a main character and what were your cinematic influences?

I was always passionate about theatre and cinema since childhood, but I never studied either in an academic format. Most of my studies were independent self-driven attempts. I was fortunate to attend several theatre/ film workshops where I gathered loads of useful information. I am a big fan of Daoud Abdel Sayed (https://en.wikipedia.org/wiki/Daoud_Abdel_Sayed). His 1991 film ‘Kit Kat’ (https://en.wikipedia.org/wiki/Al-Kit_Kat) was one of the films that left a big impression on me as well as ‘The Land of Fear’ (http://www.imdb.com/title/tt0233234/plotsummary?ref_=tt_ov_pl). But my real influence was theatre. That was my real source of inspiration in making my own films. For example breaking the fourth wall was one of the tools I applied in ‘Mannequin’ to engage the viewers – whether to empathize with the victim or be a silent witness.

How did your film work support your interaction with patients?

Working with film and acting has several psychological aspects that runs fluidly back and forth; as an actor I have to dig deep and uncover my personal truths and convictions, and in doing that I was able to widen my perspective. In return, I was able to deal more flexibility with patients and understand their urges and needs. Honestly I believe that every person (doctor or otherwise) should have a go at acting because it makes you better understand yourself. Acting helps you to identify your own personal journeys in a civilized manner.

Films take you to different realities and help you plunge into different worlds. A film can also help release the pressure of everyday life stressors.

Which films do you encourage your students/ patients to watch and why?

I tell them to watch any types of films and not just art films; I also encourage them to go to performances, theatre, galleries, and any place that provides a form of art to exercise their creative muscles

 

 

Book Review: A Smell of Burning

6 Dec, 16 | by cquigley

 

a-smell-of-burning-jacket

 

A Smell of Burning

By Colin Grant

London: Jonathan Cape, 2016

 

Reviewed by Dr Maria Vaccarella, University of Bristol

 

Colin Grant’s A Smell of Burning conveys a powerful message: being diagnosed with epilepsy means being associated with an intricate and captivating cultural history. Patients and families are connected to centuries of prejudice, transcendental explanations, scientific, as well as social, experiments, and works of art. Grant wrote this book as an elegy to his younger brother Christopher, who died of SUDEP (Sudden Unexpected Death in Epilepsy) in 2008; he, thus, joined David B. and William Fiennes, who in Epileptic (1996 – 2003) and The Music Room (2009) respectively, explore the impact of epilepsy in their brothers and in their families at large. It is, indeed, endearing to find resonances between these accounts, despite their different familial backgrounds and the different medical support available in each case. When Grant admits in his introduction that he “often wandered where Christopher went in those moments” (p. X), we are reminded of the many, imaginative spatial metaphors, beautifully rendered in the woodcut style of David B.’s drawings: for example, the original French title of his graphic memoir, L’Ascension du Haut Mal, reconfigures epilepsy as a disproportionately high mountain the two brothers attempt to climb throughout the book. But time is equally important in grasping the multifaceted concept of epilepsy: Grant learns in medical school that “the answer to your patient’s present condition lies in the past” (p. 2), which gives way to his retracing of the past of epilepsy in the book, interwoven with recollections of his brother, in a blending of medical history and biography, reminiscent of the more conscious pastiche technique used by Fiennes in The Music Room. Grant’s medical training, in actual fact, adds some intriguing nuancing to this shared plotline, as for example when he confesses his fascination, mixed with revulsion, in witnessing one of his patients having a tonic clonic seizure.

The interplay of spatial and temporal dimensions in making sense of epilepsy, despite its inherent ineffability, provides the basis for a secret language between the two brothers: coded expressions, such as “you had a visitor” (p. 68) or being “not in Kansas anymore” (p. 157), are genuinely tender glimpses into the reality of living with epilepsy. These enlightening, heartfelt snapshots into Christopher’s life are, unfortunately, almost obfuscated by the plethora of wide-ranging vignettes of famous people associated with epilepsy, from Julius Caesar to Neil Young. The limits of retrospective diagnosis and the problems of glorifying rhetorical catalogues of outstanding patients are well-known: it is, then, uplifting to learn that Christopher himself “was not comforted by the roll call of famous historical figures that were thought to have had epilepsy” (p. 22), though the permanence of these tropes in the book remains disorienting.

The tension between a more public, maybe even political, facet of epilepsy and its more intimate manifestations is palpable throughout the text: Grant moves among milestones in the history of epilepsy understanding and treatment, in search of an overarching meaning, which could probably give him (and his readers) a privileged access into Christopher’s brain and mind, into his mysterious unconscious peregrinations, as well as into his more conscious decisions, such as, for example, his intermittent adherence to his anti-epileptic drug regime. Each chapter in the book relies on these connections between the macro and micro dimensions of epilepsy, sometimes resulting in a slightly skewed perspective: by means of an example, Grant’s reading of “the fragility of Myshkin’s epileptic body to mirror the underlying fissures of Russian society” (p. 56) paradoxically detracts from Dostoevsky’s pioneering subjective contribution to the narrative use of epilepsy.

There are, indeed, a few underdeveloped points in A Smell of Burning that call for a more conscientious elaboration. Seizures are constantly described with reference to the old-fashioned vocabulary of grand mal and petit mal, possibly in the attempt to conjure up well-known social perceptions of epilepsy; yet, the downside of preventing the circulation of the more up-to-date and sophisticated medical terminology is not contemplated. Along similar lines, Grant brings in the testimony of writer M., who defines himself as “epileptic” (p. 204 and 210) to signify how pervasive and disempowering his condition is. Accordingly, Grant describes people with epilepsy as “epileptics” throughout his book, but never discusses in detail why some patients may feel uncomfortable with this label. A good example of this different view comes from Lily O’Connor, the protagonist of the 2014 film Electricity, which Grant briefly mentions as a recent creative attempt to represent epilepsy, for instance, through “swirling spectral lights” (p. 59). Yet, it is arguably in Ray Robinson’s 2006 experimental novel by the same title, on which the film is based, that we can find extensive discussion of discriminating labelling, as well as ground-breaking visual renditions of seizures on the page, thanks to the use of jumbled typeface or blank pages.

Unsurprisingly, it is Christopher himself, who provides the most compelling attempts to comprehend epilepsy in A Smell of Burning. When he calls his seizures “thingamajigs” (p. 160), he perfectly captures their uncertain nature, as well as maybe his own difficulty in absorbing obscure medical terminology. Similarly, in a very imaginative way, he introduces his GP to the Native American concept of Konyaanisqatsi (p. 165), life out of balance, to explain how his drugs made him feel in disharmony with nature. Christopher learned this concept from Godfrey Reggio’s experimental 1982 film on contemporary American landscapes and was planning to create his own filmic response to it, perhaps an analogous timelapse footage of the wanderings of an “epileptic mind” (p. 203). We are sadly never going to watch this promising film project, but thanks to A Smell of Burning we are encouraged to put into question our own perceptions of what constitutes balance and harmony, in our brains, our minds, and the world around us.

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