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Book review – A Body, Undone: Living On After Great Pain

3 Nov, 16 | by cquigley

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Christina Crosby, A Body, Undone: Living On After Great Pain. NYU Press, 2016.

Reviewed by Ayesha Ahmad

 

There is a paradox in Professor Christina Crosby’s biography A Body, Undone: Living On After Great Pain–the paralysis that constrained her body so suddenly seems to have freed the language that we all possess and contain but which is generally consigned to a particular place in space and time.

Details about Crosby’s accident are astute, acute, and actual—there is no reflection, reliving or ruminating. The scene shared is that of Crosby on a cycling ride. Three miles into the 17 mile bicycle ride that was woven into a larger tapestry of 1000 miles to commemorate her 50th birthday, the fateful accident occurred. The journey stopped being a physical endeavour, instead reaching plateaus and crevices that became Crosby’s new lived experience.

The book requires the reader to become a traveller. We must leave the comfort of our previously held thoughts and beliefs. We must accept that we can no longer look behind at our past. We must embrace the fact that we are now in a new territory. We need new concepts, new identities and new sensations to experience the life that we are continue to breathe. We know that we are living in a new dimension—a different time and space to where we once walked and talked and wrote and sang, and celebrated our stories. As Crosby writes:

“Your body has and is a history” (p. 50)

This history becomes a vacuum. Crosby’s accident shows the fragility of life, and also reveals how our lives can be filled endlessly with triumphs and tragedies, and that these events can happen in any order, at any time, and at any cost. This is the vulnerability of our lives that Crosby sees as signifying our incompleteness. The way we treat our vulnerability, then, is a marker of how we find our completeness.

A Body, Undone spoke to me. Crosby’s resonated with me as her words created echoes and magnified the dusty corners where I have been living within myself. Her words helped me to regain a sense of living. I experienced a transcendence while reading the book. A Body, Undone is not a book about paralysis, about the loss of feeling, the inability to feel physical pain. Instead, it is about the body transformed. As is clearly evident throughout the narrative, it is Crosby’s masterful skill of language that navigated this transformation. Her voice resonates in the observation that:

“We speak of being in a body, as though the self were somehow contained inside a bodily exterior” (p. 50).

The body became “undone”, yet language became complete as Crosby discovered, through the paradox of the paralysis of the body, what it means to truly experience the vulnerability of being human. She takes us to the chasm of our essence.

Finally, I present the following, a nuance on the binaries we are forced into during life. Crosby writes:

“I’m afraid I’ll stop grieving and equally afraid that I’ll never stop grieving. If I do stop grieving, I will necessarily have come to terms with my profoundly changed body and my profoundly changed life, for I can leave off mourning only by no longer cherishing and burnishing my memories of the past” (p.197).

Crosby’s book gives us a gift—that of freedom, freedom to traverse the limitations we set forth for ourselves and to use our story to become whoever we are or wish to be.

 

Art Review: Visions of Multiple Sclerosis

28 Oct, 16 | by cquigley

 

Hannah Laycocks’s Visions of Multiple Sclerosis: Perceiving Identity

Reviewed by Shahd Alshammari, PhD.

 

When artists’ work is considered provocative, you usually think that their choice of subject is taboo. While certainly not “taboo”, the disabled body, and even more interestingly the “invisible disabled body”, in itself a paradox, is a subject that medical practitioners and society continue to struggle with. What happens to the sense of ‘self’ when the body attacks the self, essentially its own being? Hannah Laycock’s photography exhibitions ‘Perceiving Identity’ and ‘Awakenings’ launched in 2015, both  exploring the disabled body and identity.

Laycock’s work is contemporary in its subject and form, while at the same time being rooted in her own personal experience with Multiple Sclerosis (MS). Like Hannah, I have similarly struggled with MS. Many times during the day, I tell my body to behave. I say it out loud. I talk to my body, telling her to wake up. With MS, the Central Nervous System – to some extent the mind – attacks the body. Disconnected, alienated from the body, there is a breakdown of communication. The body must wake up. That is my understanding of the title of the exhibition ‘Awakenings.’ I root it in a very subjective experience, while simultaneously recognizing the work’s significance in urging society to wake up, to open its eyes to “other” ways of living and being.

‘Perceiving Identity’, titled in the same thematic way that ‘Awakenings’ is, raises a central question of interest to Disability Scholars, namely identity. I have called MS, a ‘Random Disease’ in the past, one that changes one’s life course, though not necessarily affecting mortality. In one of the photographs (Figure 1), Laycock captures a simple shot of a road. Uncomplicated, it is a road that is not paved with stones, holes or obstacles. It is what it is. In fact, the colors on the road seem to resemble the light of rainbow colors. My own vision understands the colors as orange, green, and yellow. The choice of colors symbolizes the wide array of MS identities, and MS symptoms (no two individuals have the same symptoms; the course of the disease differs from one person to another). Color blends onto the road, and sometimes, since vision can be affected in MS patients, this is not always a pleasant experience. It becomes difficult to differentiate between spaces. Other questions that chronically ill patients have voiced or left unvoiced, suppressed, include “where will my life go from here?” The road is the map, the new map that you are handed along with the diagnosis. This is the path, as unknown and random as it is.

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Figure 1. Copyright Hannah Laycock

 

Figure 2 is raw in its positioning of the artist at the forefront, as we are visually forced to focus on her back, on which she dangles what seems to be redcurrants, tracing her spine.

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Figure 2. Copyright Hannah Laycock

The spine of course is affected in MS, as well as the brain. The redcurrant lands in its vibrancy along Laycock’s flesh, a strong contrast between the redness of the fruit and the artist’s skin. Redcurrants are supposedly beneficial in terms of a healthy immune system, efficient nerve transmission signalling, protection from free radical damage, amongst other potential effects.” Whether this is actually proven to help MS is not the point. It is yet another attempt at rebuilding a central nervous system that has chosen to break up with its significant other – the self, one’s identity. The artist holds the redcurrant in place, exhibiting control of her body, an attempt at the very least to alter the course of the disease, to do one’s part, to eat healthy, to be vigilant in fighting the disease.

All of the photographs that Laycock has beautifully presented share this theme of disconnection, of a breakdown of what is essentially communication between the mind and the body. As a Disability Studies scholar and someone who sees through the difficulty, and randomness, of living with this undefinable and uncanny disease (uncanny because it is unhomely, it is a body that used to house me just fine), I can say that Laycock’s work is bold and does not attempt to rectify or beautify or inspire. It recognizes the unpredictability and confusion of the disease, both for the patient and for medical practitioners. Nobody has answers, as frustrating as it is. Laycock’s work tells a fragmented narrative, part of the fragmentation of MS, of living with this disease, and seems to force you into her lived experience, rather than just standing along the sidelines, using diagnostic words, and labeling MS as ‘degenerative.’ The photographs carry a sense of closeness and intimacy. As viewers we are almost forced to stop and think about the literal and figurative meanings in Laycock’s artistic vision. Each photograph encourages us to pause and to ask “what is going on?”

And that question in itself is a repeated and dominant one in the lives of MS patients and neurologists attempting to diagnose and cure MS.

Hannah Laycock’s work can be viewed here: http://www.hannahlaycock.com/Portfolio/Perceiving-Identity.aspx

 

Related reading

Devan Stahl, Darian Goldin Stahl. Seeing illness in art and medicine: a patient and printmaker collaboration. Med Humanities 2016;42:3 155159.

Book Review: Multiple Autisms

25 Oct, 16 | by cquigley

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

 

Reviewed by Patrick Danner

Ph.D. Student, University of Louisville, Rhetoric and Composition

 

Jennifer S. Singh’s Multiple Autisms: Spectrums of Advocacy and Genomic Science weaves together several moving pieces surrounding autism research over the past 40+ years. Singh takes up histories of autism sciences, their multiple attendant discourses, the political, legislative and financial elements of this evolving research, and the distinct voices of researchers, scientists, individuals on the “autism spectrum” and their parents. Singh’s book is notable in its scope and its ability to represent that scope in five chapters.

Singh stakes a methodological balance early: a mix of historical and light ethnographic (primarily interview) methods, with more consequence given to the latter. Chapter 1 summarizes the early history of autism research–glossing figures like Leo Kanner and Hans Asperger–before turning to iterations of autism in the DSM. Though this history remains a touchstone throughout the text, a key conceptual turn comes with the introduction of Ian Hacking’s concepts of “looping effects” and “making up people” (Singh 29). Hacking provides the text’s central thrust: “In this case, autism is subject to the looping effects based on the way various parents, researchers, therapists, and physicians interact with a person diagnosed with autism. This type of interaction can in turn change or alter the classification.” Here, Singh foregrounds a tension between the scientific discourses that have historically attended autism and the on-the-ground, day-to-day experiences of autistics and their families. The book’s framework for this tension, emphasizing the multitude of players involved in the biotechnological and biosocial spheres of autism research, speaks to Singh’s dual intellectual trajectories: as a former researcher in the private biotechnology sector and an academic sociologist of science, Singh constructs a text that oscillates between these two spheres–the biotechnological and the biosocial–without losing sight of the interplay between them.

Chapter 2 opens in the realm of the social, overviewing the involvement of parents and their lay expertise in forwarding autism genetics research. Singh cites cases such as the National Alliance for Autism Research (NAAR) and the Autism Genome Project (AGP). The cooperation among these non-profits and governmental groups (i.e. the NIH) is presented by Singh almost as an illustration of resource mobilization (be it monetary or genetic resources, or scientific expertise) and the alignment of political and scientific opportunity. Singh describes a “collective mobilization” of, largely, parent-led groups and medical research organization to “engage in building epistemic infrastructures [. . . .] establishing multiple partnerships, developing and transforming various levels of expertise, and building a sense of community within the field of autism genetic science” (58). Such language aligns well with the sociological discourses of social action (for example, see McCarthy and Zald [1977], who apply economic language of “resources” to social movement activity). Moreover, Singh notes the mutually beneficial development of the publicly accessible AGP database. The AGP, in Singh’s telling, creates a positive research climate by running counter to standard scientific practice: its satellite projects promote sharing of data among researchers. As one of her interviewees notes, “Breakthroughs come whenever people talk to each other from different fields, and that’s just the way it happens, right?” (79).

For Singh, though, such a research climate and its robust network of players facilitates the development of potentially harmful epistemic infrastructures–both discursive and material structures–that don’t necessarily produce desired outcomes. Chapter 3 thus returns to the biotechnological scene and the discourses that attend shifts from genomic to genetic models of thought, the ultimate failure to isolate an “autism gene,” and the move toward potentially fraught genomic models. The AGP, Singh illustrates, quickened the scientific consensus that no “major common and heritable gene” is definitively associated with autism. The introduction of genomic, microarray technology creates new styles of thought for researchers concerned with the root causes of autism. Rather than seeking to identify a specific gene, Singh notes a turn in the twenty-first century toward a greater acceptance of “multiple autisms,” “the creation of new subgroups or categories of autism that have genetic and/or genomic similarity,” or similar “comorbid conditions not a part of the diagnosis” (106). Though chapter 3 is awash in technical discourse (perhaps a bit too much so for lay readers) Singh is sure to not lose sight of the social and symbolic implications of the genomic turn for concepts of risk and biological citizenship. “By linking the cause of autism to heritable genes,” she writes, “parents were freed from the guilt that they did something to cause their child’s autism. However, under genomic styles of thought, parents, especially mothers, are once again becoming implicated in the cause of their child’s autism” (119). Here we get insight to the broad conceptual value of Singh’s text: in the middle of a sprawling study of the influencers of scientific research into autism is a move toward closing the conceptual gap between the research community and the larger biosocial public.

Concepts of biosociality and biological citizenship become increasingly consequential to the book later on. In chapter 4, Singh illustrates biological citizenship within the autism community (via Adriana Petryna and Nikolas Rose) as concerning enacted claims of individuals that merge medical and lay knowledge as well as economic disenfranchisement that could hinder access to the materials necessary to enact these claims (127). Such structural hindrances become a key component of chapter 4, particularly as Singh demonstrates that parents are more likely to submit to genetic tests if they could receive a diagnosis that allows access to social and medical services (147). Singh places biological citizenship as a question of doing what is necessary not only for one’s child but to future generations as well. At its core, this vision of biological citizenship underlies much of Singh’s history of autism genetic and genomic research.

If chapters 1-4 present a largely–though not completely–positive view of advances in and around autism, chapter 5 provides a bit of a counterpoint. In her interviews with adults on the spectrum, Singh notes that “a major financial and scientific focus of autism research has been genetic and genomics science, with little attention to other forms of knowledge that might be more beneficial to people living with autism” (153). Singh leaves implicit, I believe, what readers in the humanities would readily note: the voices present at the founding of major scientific initiatives to address autism as hereditary have largely negated the voices of those with autism. In doing so, the growing emphasis on genetic and genomic research has solidified an epistemological and discursive field of research that frames genetic testing as worthwhile only “if there was a targeted medication that could alleviate exactly the symptoms of Asperger’s they wanted to erase” (168).

The book’s closing is tentatively optimistic, leaning heavily on self-advocacy and new, empowering citizenship claims being carved out by adults with autism; yet Singh also notes, perhaps ominously, that current genetic and genomic frames of autism research are predominant and highly profitable. Thus, readers of Singh’s book are left with urgent questions. How do we to ensure all voices, particularly patient or subject voices, are heard as interests converge around medical projects, particularly those concerned with genetics and genomics? And what are the foreseeable limits of these sciences, not just bioethically but biosocially?

Such lingering questions do not suggest the text is at all lacking, but testify to the range of uses Multiple Autisms could take on. Though there is a noticeable brevity granted to two moments in the book–the material impediments toward biocitizenship in chapter 4 and the entire fifth chapter, where the voices of autism are finally foregrounded–such short treatment could conceivably be taken as a productive move, granting Multiple Autisms a fruitful open-endedness, or at least a testament to the lacking presence of patient voices in medical research broadly.

Scholars of medical sociology, rhetoric, and broader medical humanities alike would benefit greatly from Singh’s text. Issues of biocitizenship and medical(ized) communities remain central, at times evoked in ways that challenge predominant views of both. The question of genetics and biosociality–the potential impact on communities building around illness when genetic and then genomic turns are made–presents ripe ground for further research. Such questions could align nicely, for example, with Diane Price Herndl’s work on BRCA risk. Further, Singh’s placement of “risk” in the text, as she notes rightly that “risk” rarely shows up in discourses of lived experiences of autism (163), troubles notions of “biocitizenship” as discussed by scholars like Herndl and J. Blake Scott. In short, though it is primarily a snapshot of a specific biotechnological and biosocial moment, Singh’s book extends to major contemporary concerns about community, ethics, genetics, diagnostics, and more. Now, as biological sciences advance in areas of genomics–and as the popularity of genetic and genomic databases among researchers surely grows–Multiple Autisms will prove to provide important early insights into how these changes matter for those perennially on the receiving end of these multiplying and complex diagnoses.

 

Works Cited

McCarthy, John D. and Mayer N. Zald. “Resource Mobilization and Social Movements: A Partial Theory.” American Journal of Sociology. 82.6 (1977): 1212-1241.

Price Herndl, Diane. “Virtual Cancer: BRCA and Posthuman Narratives of Deleterious Mutation.” Tulsa Studies in Women’s Literature. 32.2 (2013): 25-45.

Scott, J. Blake. “Mapping the HIV Test in the Discursive-Material Practices of Sex.” Risky Rhetoric: AIDS and the Cultural Practices of HIV Testing.  Carbondale: Southern Illinois UP. 2003. 90-120.

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

Book Review: This Mortal Coil

18 Oct, 16 | by cquigley

 

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Fay Bound Alberti, This Mortal Coil: the human body in history and culture, (Oxford: Oxford University Press, 2016)

 

Reviewed by Hazel Croft

 

We all have stories to tell about our bodies. They are, as Fay Bound Alberti writes, ‘the inescapable material reality we live with and in.’ In today’s scientific and medical world, however, our bodies are often viewed as a series of parts to be examined rather than an interconnected whole. In This Mortal Coil, Alberti explores the history of how and why we came to see our bodies as an assemblage of parts to be scrutinised, assessed and treated. Reading this book, I was reminded of my own story of how I came to be diagnosed with a large, benign tumour on my pituitary gland. I spent over two years seeking treatment from my GP and optician for what seemed to me to be a variety of unconnected symptoms. Finally, during an emergency visit to hospital when my eyesight failed, one doctor asked me to describe everything I could remember about changes in my life and body in recent years. It was only when I recounted my seemingly disparate symptoms of gaining weight, frequent headaches, feeling anxious, irregular periods and failing eyesight as one narrative story that the doctors were able to make a diagnosis. Such a holistic approach is all too rare in the context of today’s highly specialised, and often under-resourced, medical services, however. As Alberti highlights, ‘Today’s government funding, research, building, and personnel resources form separate systems to deal with mental health (psychiatry and psychology), the heart (cardiology), the brain (neuroscience), the skin (dermatology), the gut (gastroenterology), and so on.’

In This Mortal Coil, Alberti features a series of historical case studies to examine how we came to view the body, and its ailments and injuries, in this compartmentalised way. She starts with the moving story of her teenage daughter Millie’s diagnosis with scoliosis, a severe curvature of the spine, which has caused her great discomfort and pain. Millie has had to endure endless surgery to try to straighten her spine, including the insertion of metal rods into her back, causing Alberti to ask, ‘At what point do the rods and screws become part of her “real” body?’ Millie’s spine was treated as a discrete object to be assessed and treated, disconnected from her emotions about her spine and her anxieties about her body image. Millie’s story foregrounds some of the major themes of the book – the separation between the body and the mind, and the ruptures between our sense of self and our bodily organs. As Alberti writes, ‘In modern health care our ability to treat the spine as a part we can repair, like the heart, like a limb, necessarily displaces our “self” from the body part in question.’

In the ensuing chapters, Alberti takes us on a fascinating voyage through the body and its parts examining the history of the skeleton, heart, brain and stomach, and the less charted territory of the breasts and genitals, the skin and the tongue. In each case, Alberti shows how changes in medical knowledge, and in the language and metaphors we use to explain and describe our bodies, have transformed the way we have experienced, lived within and felt about our bodies. This journey takes us through political, medical and philosophical developments that transformed our understanding of the body as being controlled by the balance of the four humours, to the brain-centred understanding we have of the body today. Moreover, these changes in the conceptualisation of the body and its organs have always been inflected with historically-specific gendered and racialized assumptions about human behaviour and emotions. Taking an explicitly feminist perspective throughout, Alberti explores how differences between the sexes were naturalised and encoded in scientific and medical texts. She looks, for example, at how the bones the bones were gendered by the scientific classifications of the structure and shape of the male and female skeleton. The assumption that women will have smaller skeletons, developed in the 18th and 19th centuries, has meant that even today physically large women, or conversely physically small men, have not been recognised in archaeological surveys of human remains.

Such gendered explanations come to the fore in the chapters where Alberti focuses on the history of female bodies, and how scientific and medical ideas about female and male bodies have naturalised inequality between men and women. I found the chapters on the history of the breast and female sexual organs to be some of the most compelling and original in the book. In her chapter on female genitalia, for example, Alberti traces the often overlooked history of the vagina, the vulva, the hymen and the clitoris. She shows how the vagina has often been viewed and represented, in both medical and cultural texts, by the absence of a penis, a ‘no thing’, as it is described in the slang Shakespeare deploys in Hamlet. Even today, Alberti argues, dictionary definitions seldom describe the vagina as a sexual organ in and of itself, but rather as a canal or a passage, leading to elsewhere – its purpose presumably to gratify the male penetrator. Female sexual organs have historically been very sketchily represented in medical textbooks. This is particularly the case with the clitoris, the one human organ designed solely to provide pleasure, which remains the most under-researched and under-represented organ of the female body. As Alberti writes, the clitoris ‘symbolises historically persistent fears about female sexuality: disorderly, uncontrollable, and independent, a force for agency above and beyond its medico-scientific and social framework’. In contrast, the far less biologically complex flap of skin in the vagina, the hymen, has been invested with undue medical and cultural significance, repeatedly referred to as literal and figurative ‘evidence’ of a woman’s virginity and purity.

Alberti also traces how absence of body hair has come to be seen as an ideal of feminine beauty in Westernised societies. How did we get to a place, Alberti asks, ‘where the almost complete removal of public hair, a process that is painful, inconvenient, expensive, and repetitive, is not only fashionable but also the idealised “norm”, female body hair being seen, at least in most of Europe and the United States as unattractive, unfeminine, and even dirty?’ Here she pinpoints how excessive body hair on women became pathologized in the 19th century, particularly with the development of evolutionary theory whereby excessive body hair became associated with being animal-like and primitive. In the case of Julia Patrana, a black woman with excessive body hair who was exhibited across Europe in a touring ‘human zoo’ in the 1850s and 1860s, we see how gendered and racialized prejudices intersected in medical and popular representations about the black, female body.

Alberti even devotes a chapter to the gendered history of the tongue, exploring how the tongue has been a powerful metaphor confirming women as lesser beings than men. If I had previously considered the tongue as a biological entity, it had been as a rather innocuous organ that enabled us to speak and communicate. Although technically the tongue is sexless and without individual agency, Alberti argues that its history is ‘rife with social, sexual, psychological, linguistic, and physiological significance.’ The tongue, like all organs of the body, cannot be separated by the gendered linguistic metaphors that have been used to describe it. Female tongues have historically been seen as untrustworthy and as a threat to social order. In early modern Britain, the 17th and 18th centuries, for example, women were frequently characterised as having ‘vexatious’, ‘sharp’ or ‘scolding’ tongues – as illustrated by the character of Katherine, the ‘nag’ in Shakespeare’s Taming of the Shrew. By the 18th century, women’s tongues were said to drive men to violence, and an ‘evil tongue’ was enough to exonerate a man from beating, and even murdering, his wife. Cruel punishments were devised to keep women’s tongues under control – including the ‘scold’s bridle’, a metal contraption that was strapped to the woman’s head to prevent her from speaking.

Although Alberti analyses the organs of the body in separate chapters, she skilfully subverts the view of the body as an assemblage of disparate parts. By taking the body apart, she writes, we might even be able to reconstruct it anew. She concludes the book with a call for a holistic approach to the body and its ailments, one that views the body as more than the sum of its parts. My fear is that this holistic approach is out of sync with the current direction of medical thought and practice in a neoliberal capitalist economy, where medical research and treatment is dominated by competing specialisms and by giant pharmaceutical companies, which seem to be ever more voraciously targeting their wares on specific bodily organs and diseases in the race to maximise profits. As Alberti remarks in her conclusion, although the body represents the limits of our sense of self, the skin marking the boundary between ourselves and the world, we are not self-contained beings, separate from the social and political environments we inhabit. Rather, writes Alberti, we are ‘social beings that communicate with others – not only through tongues as symbols and organs, but through social practices, behaviours and our very materiality.’  It would be interesting to explore further the ways in which social structures and practices, such as the dominance of work in our daily lives and constraints on time and leisure, have altered our bodies and the way we think, feel and talk about them.

In This Mortal Coil, Alberti has provided a compelling history, which explores the relationship between the biological body, with its bones, skin, guts and genitals, and the language and metaphors we use to describe it, without reducing one to the other. Written accessibly, and in beautiful prose, this book will appeal to historians, social scientists, medical professionals and the general reader alike. Highly recommended.

 

Hazel Croft is an associate research fellow at Birkbeck College, University of London

Film Review: On Call

10 Oct, 16 | by cquigley

 

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Revisiting empathy- Medicine and asylum seekers 

Review of On call – France, 2016, directed by Alice Diop

Showing at the BFI- London Film Festival on Wednesday 12th, and Friday 14th October 2016, London

http://www.bfi.org.uk/lff

Reviewed by Dr Khalid Ali, Screening Room Editor

 

In the current international refugee crisis, no country is immune from facing directly or indirectly the impact of millions of people being displaced from their countries of origin. Health and social care professionals are at the forefront of dealing with refugees from all over the world. On Call is a documentary film showing several encounters of asylum seekers in a clinic in Avicenne Hospital close to Paris. The clinic is an exceptional facility offering consultations without pre-booking for newly arrived immigrants. Dr Jean Pierre Geeraert provides medical advice for physical ailments, counselling for psychiatric problems, and completes certificates for social benefits, and housing requests for African and Asian refugees. Each consultation is unique in its specific details, but the common underlying factors are the hopelessness, discrimination and frustration that these unfortunate people experience on a daily basis.

These patient stories poignantly illustrate that health is a reflection of physical, mental and social well-being, and as such a doctor needs to be an expert physician, psychiatrist as well as a social worker. Dr Geeraert is almost single-handed in trying to sort out his patients’ refugee visas, their work permits, and housing appeals. His frustration is evident as his genuine desire to help is met with total indifference from immigration departments and social security offices. The ever-so-brief consultation sessions do not allow him the much-needed time to explore what ‘really matters to his distraught patients’. He resorts to regularly referring them for clinical psychology support.

Maintaining a note of authenticity, the film shows Dr Geeraert as a human being as well as a professional doctor; he can be annoyed by a patient who repeatedly begs him to save his life. He cannot be ‘Dr Nice’ all the time; he gets bored, and upset by some patients and the receptionist in the clinic. However trivial his shortcomings may be, he still embodies the true essence of ‘empathy’ by listening to patients, by acknowledging their fears and anxieties, and by encouraging them to share their most traumatic experiences without being embarrassed. Winning his patients’ trust does not come easily; it has grown over many years. His genuine commitment and dedication is rewarded by humane gestures of recognition from his regular clients in the form of little souvenirs that they can afford to buy.

In the 1940’s, Marjory Warren (http://www.bgs.org.uk/index.php/geriatricmedicinearchive/203-biographies/2437-marjory-warren) called for the establishment of a new speciality, namely Geriatrics Medicine, and advocated for training doctors in the holistic management of older people who were locked away in old workhouses. In the current turbulent times, it is crucial that disadvantaged citizens of the world, asylum seekers, are recognized as patients with special physical, mental, spiritual and social needs. Perhaps eminent organizations such as the Worshipful Society of Apothecaries of London through their Course in Conflict and Catastrophe Medicine’(http://www.apothecaries.org/faculty-of-the-conflict-catastrophe-medicine/course-in-conflict-catastrophe-medicine) should champion a call for training and education of doctors in a new specialty of Refugee Medicine across the wider international arena. Several NGOs have already established professional medical networks to support refugees in affected areas around the world; Doctors of the World (https://www.doctorsoftheworld.org.uk/) and Doctors 4 Refugees (https://www.doctors4refugees.org/) are notable examples. Doctors can no longer practice in silos, they need to adapt and respond to evolving international crises and challenges affecting their patients and them.

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

 

Exhibition Review: Rest & Its Discontents

6 Oct, 16 | by cquigley

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Rest & Its Discontents Exhibition

Curated by Robert Devcic, founder of GV Art London

Mile End Art Pavilion, 30 September until 30 October 2016

 

Reviewed by Natasha Feiner

 

Modern life is busy, exhausting, and stressful. Yet, rest remains as important as ever. But what does it mean to rest in the modern world? Does rest, or its absence, impact on individual health and wellbeing?

 

London, UK. 4th March, 2016. Campaigners from the Mental Health Resistance Network and DPAC block traffic on the busy Old St round in portest against the use of Maximus job coaches in GP surgeries to "create jobs by prescription." They say disabled people will be bullied into unsuitable work and lose benefits through sanctions. Peter Marshall/Alamy Live News

Mental Health Resistance Network, Reclaiming our lives and work struggles past, present and future

Rest & Its Discontents, a major new exhibition exploring the dynamics of rest, seeks to answer these questions. It draws on the research of Hubbub, an international collective of social scientists, artists, humanities researchers, scientists, broadcasters, public engagement professionals and mental health experts. Over the past two years the team, based at the Wellcome Collection in London, has explored the dynamics of rest, exhaustion, noise, tumult, and work, as they operate in mental health, neuroscience, the arts and the everyday. This exhibition is their final major event.

Rest & Its Discontents features the work of over twenty-five Hubbub contributors. Work from a number of different academic disciplines is presented in a multitude of formats including audio recordings, film, and interactive installations. A number of topics are explored in the exhibition, including therapeutic relaxation, breath and musical ‘rest’, and sleep studies.

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Antonia Barnett-McIntosh, Breath, still from film, 2015. Image courtesy of Ed Prosser

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Nina Garthwaite, Default Mode Radio Network. Image courtesy Ed Prosser

Highlights include ‘The Cubiculum’, which invites visitors to explore the history of mind-wandering through sound and spoken word, and ‘Cartographies of Rest’, a multi-screen installation that visualises interactions between noise and mood.

The exhibition is accompanied by an event series, including workshops, poetry performances, and panel discussions with psychologists and journalists. I have booked tickets for ‘The Meditative Response’ workshop, which will bring together historian Ayesha Nathoo and composer Eugene Skeef. The workshop promises to ‘create a collective experience akin to the relaxation response’. Other events this month will centre on anti-work politics, self-tracking, and mental health.

A BBC Radio 4 series, The Anatomy of Rest, also accompanies the exhibition. First broadcast in September, the three-part series it is now available in full on BBC iPlayer. Presented by Claudia Hammond, the series asks what rest means to historians, poets, and neuroscientists. The final episode announces the results of the ‘Rest Test’, which asked 18,000 people from 193 countries why and how they rest. The data from the test has been visualised as a fabric pattern covering a series of benches in the Mile End exhibition space.

claudia-hammond-the-rest-test-rest-zone-2016-digitial-print-image-courtesy-of-lustlab

Claudia Hammond, The Rest Test & Rest Zone, 2016, digitial print. Image courtesy of LUSTlab

An open access publication, The Restless Compendium, explores many of the exhibition’s themes further. Comprising twenty-two essays on rest and its opposites, it extends and develops many of the exhibition’s major themes. The Restless Compendium is available here as a free download: http://hubbubresearch.org/restlesscompendium/

Rest & Its Discontents is wide-ranging in its exploration of rest and its opposites. It is, like the Hubbub project more broadly, truly interdisciplinary. As a result it offers novel and interesting perspectives that, while at times abstract, will no doubt interest humanities scholars, scientists, and medical practitioners. The exhibition is best enjoyed alongside its accompanying event series, radio show, and publication. These are all speak to each other and add new layers of depth and meaning to the installations and displays at the Mile End site.

sj-fowler-maja-jantar-soundings-iii-2016-image-courtesy-of-ed-prosser1

SJ Fowler & Maja Jantar, Soundings III, 2016. Image courtesy of Ed Prosser

 

For more information, and to book events, visit: http://hubbubresearch.org/

 

The Mile End Art Pavilion, Clinton Road, London E3 4QY.

Opening hours 12:00-18:00, Tuesday-Sunday. Closed on Monday.

Late opening Thursday 6 October, until 21:00.

Admission is free.

 

Natasha Feiner is a PhD student at the University of Exeter. Twitter @natashafeiner.

Book Review: Aliceheimer’s

5 Oct, 16 | by cquigley

978-0-271-07468-9lg

 

Aliceheimer’s. Alzheimer’s Through the Looking Glass

By Dana Walrath. Published by The Pennsylvania State University Press, 2016.

 

Reviewed by Dr Martina Zimmermann.

 

Dana Walrath’s Aliceheimer’s. Alzheimer’s Through the Looking Glass is the second graphic memoir by an adult child about her mother’s Alzheimer’s disease, after Sarah Leavitt’s Tangle. A Story About Alzheimer’s, My Mother, and Me (2012); a further contribution to the steadily growing body of dementia caregiver life-writing. The best-known representative of this body is surely John Bayley’s Iris: A Memoir of Iris Murdoch (1998) – given the account’s prominent filmic adaptation, its unceasing consideration in literary scholarship, its persistent presence in the lecture theatre and seminar room, and the countless citations other caregivers take from this text. For these caregivers, Bayley’s narrative has provided inspiration, and at times moral justification – especially for how they tell about the patient’s loss of self. Walrath foregoes reference to the experiences of other caregivers. Instead, she connects her account to Lewis Carroll’s Alice’s Adventures in Wonderland (1865) and Through the Looking Glass (1871). Allusion to Alice’s Adventures in caregiver narratives is not new: Cécile Huguenin made the connection in Alzheimer mon amour [Alzheimer my love] (2011) and Sally Magnusson in Where Memories Go. Why Dementia Changes Everything (2014). Both wife and daughter refer to being lost in an environment that resembles Carroll’s nonsense world, exposed to the nonsensical organisation of caregiving and lacking support from practicing clinicians. Walrath, however, maps her narrative onto Carroll’s story to depict the condition itself. In doing so, she offers an unexpected perspective on Alzheimer’s disease; she seemingly creates a new condition: Aliceheimer’s. Concurrently, Aliceheimer’s acknowledges that Alzheimer’s disease creates a new person, indelibly linked to the Alzheimer’s disease experience. Alice is no longer “her old self” – a “proud, hardworking career woman [who] had done all the cooking and cleaning for her family of five, without any outside help” (11). Having fallen down the rabbit hole, she now is “her new self” (27): Aliceheimer.

A pronounced feature of Alice’s dementia is disease-related hallucinations and fears, and Walrath dedicates a large part of her account to this aspect of her mother’s illness experience. This choice of presentation makes Walrath’s narrative unique. In fact, affective symptomatology, that is auditory hallucinations as well as ideas of jealousy, had been described by Alois Alzheimer in the landmark case of Auguste Deter in 1906. However, cognitive and histopathological features took priority in medico-scientific and healthcare descriptions of dementia patients in the first half of the twentieth century and beyond. And while the patient’s mind and psyche entered the literary arena much earlier and more explicitly (since the 1920s) as compared to when and how old-age psychiatrists and social medics began to take an interest in this area, they continue to remain absent from most caregiver accounts. Walrath describes some of her mother’s hallucinations, but more importantly, she gives them new meaning, depicting them as Alice’s space time travel and a special power (37). What happens under the spell of Alzheimer’s disease happens in wonderland. Mapping her mother’s experiences onto the adventures of Carroll’s character is a gambit that enables the caregiver to counter-narrate the patient’s social death and loss of self in a culture “where death is taboo, and aging is not celebrated” (47).

Walrath confirms what anthropologist Janelle Taylor explored in her prize-winning essay “On Recognition, Caring, and Dementia” (2008), namely that recognition is considered to be the “public threshold” (69). Specifically, the first thing Walrath is asked when her interlocutor learns that Alice has been placed in a nursing home is: “does she still recognize you?” (69) An anthropologist herself, Walrath asserts that “more than recognition of individuals and their social roles, it is recognition of intention and behavior that matters” (69). This insight is core to Walrath’s caregiving practice, as she assigns intention to Alice’s hallucination-caused behaviour – a strategy also pursued by Reeve Lindbergh in No More Words. A Journal of My Mother, Anne Morrow Lindbergh (2001). Lindbergh’s literary account of her mother’s dementia features among those we perceive of as particularly enabling because it seeks to identify the patient’s continued identity and self within dementia. Similarly, Walrath concedes that “there is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers – useful, true humans who contribute to our collective good, instead of scary zombies.” (4) This approach echoes that of other caregivers, like Arno Geiger in Der alte König in seinem Exil [The old king in his exile] (2011), Ruth Schäubli-Meyer in Alzheimer. Wie will ich noch leben – wie sterben [Alzheimer’s. How will I continue to live – how will I die?] (2010) or Cécile Huguenin, who depict their parent or partner as teachers. But in comparison to these caregivers Walrath does not give her mother her own narrative space. Aliceheimer’s remains Walrath’s account. And as such it reveals that a balance between continuity of identity for the patient as parent and continuity for the caregiver as child is not easily found – neither in the illness experience itself nor in an account thereof.

Walrath writes beautifully about how she creates continuity within and for her mother’s behaviour, how she discovers gain within loss. But we are only told about the “more benign hallucinations” (5) relating for example to the patient’s sundowning (35), not the difficult ones. We read about Alzheimer’s disease as “a time of healing and magic.” (4) But we are not told about the profound challenges of dementia caregiving. We gain such information only from the acknowledgements, where Walrath concedes that “[c]aring for Alice required a community […that] gave Alice space to be herself and to grow even through loss.” (71) Where are the caregiver burden and identity crisis of the child in this narrative? Are these challenges not explored in more detail, because we are expected to fill them in from our knowledge of the mainstream dementia narrative? I believe that the key to these questions is found in the narrative’s collage technique.

There is a clear compositional strategy in Aliceheimer’s: on the left the patchwork image of pages cut from Carroll’s text incorporated into Walrath’s own drawings and colouring; on the right Walrath’s written account in one-page long snippets and impressions. In a first instance, this arrangement gives the disease-inflicted, hallucination-provoked chaos a systematic structure. But more importantly, it enables Walrath to tell two different stories. The author encourages us to “[p]age through to feel the storyline as it exists in the drawings on their own” (5). But the collage depicts a truth on which the textual narrative – effectively like every Alzheimer’s disease memoir – remains silent: the patient’s complete disintegration and dissolution. The collage arrangement leaves space for the onlooker to imagine the full truth conveyed in Aliceheimer’s. In the end, Aliceheimer’s is Alzheimer’s: a disease of relentless loss and decline.

aliceslide1

Roughly a third of the account covers the time from when Alice is placed in what Walrath terms “memory care”. From the time of Alice’s placement the pictorial narrative tells an explicit story of decline, regression and involution, of what Walrath only once spells out in writing, namely that “with each passing day, Alice was becoming developmentally younger” (61). The collage images show Alice as a young bride, a school girl, in her babyhood; Alice’s eventual bodily and mental disintegration become clear from images depicting Alice in the immediate post-fertilisation phase with the zygote (a spiral cut from a page of Carroll’s text) surrounded by sperm cells (64), and another image reducing Alice to mere DNA (the cut-out text from Carroll’s narrative that links the molecule’s two strands together featuring key characters in Alice’s adventures [66]). Instead of telling about Alice’s disintegration in the nursing home in her written account on the right, Walrath now takes to peering through the looking glass in yet another way. She sets out to explore Alice’s past and describes her personality in the past. With this account, she can place the “old” Alice before the increasingly disintegrating Aliceheimer. Not only do photographs of the young Alice begin to replace Walrath’s drawn image of her mother. In this final third, some chapters extend over more than one page, indicating that the caregiver needs to tell more of the story than the image alone can or should tell. Where the narrative snippet spreads onto the next page, the accompanying image is repeated in magnified form, suggesting that eventually the caregiver’s story must replace the patient’s world. Walrath, indeed, depicts her mother as increasingly transparent early on (10-15) and – like other caregivers such as Elena De Dionigi in Prima di volare via. Quello che l’Alzheimer non ci può rubare [Before flying away. What Alzheimer’s cannot steal from us] (2012) – as flying away (18-22).

aliceslide2

Aliceheimer’s remains Walrath’s account also for the fact that it creates continuity for the daughter that reaches beyond her professional interests. In the first place, it tries to give meaning to the caregiving process, as the daughter now has to mother the mother, or as Walrath – mother of three boys herself – puts it: “I had always wanted a daughter” (57). Equally, Walrath describes the period of caregiving as a time when she “wanted to create a bond with my mother, to redo the past, and to fill the hole inside of me” (1). And as such, Aliceheimer’s also remains Walrath’s account when the narrative turns into the daughter’s search for the mother’s past as the story of her own origin; a past that will be forgotten with Alice’s memory loss; a past that harbours Alice’s as much as her daughter’s identity as Armenian. In this regard, Walrath’s narrative fits into the tradition of adult-child caregiver narratives that arose during the 1990s’ memory boom; narratives about a parent’s dementia whose forgetting becomes linked to the danger of an entire generation’s loss of collective memory about the trauma and fate of the Jewish people – if we think about Linda Grant’s Remind Me Who I Am, Again (1998) or Lisa Appignanesi’s Losing the Dead (1999). Like many caregivers before her Walrath becomes the “archivist”, not only of the mother’s memories, but an entire people’s history: she travels to Armenia to “make the missing pieces of our past into more than ideas” (61).

Peter Keating has described Carroll’s Alice as having “pioneered the new mood of freedom and exploratory play in children’s books”. Walrath’s narrative could be read as representing a new mood of freedom in how to deal with Alzheimer’s disease. It is a narrative about Alice’s different identities, views and truths of the world; a narrative showing that “[c]onflicting realities can coexist in a single image just as they do for people with dementia and their caregivers” (5). Walrath asserts that her mother “escapes the captivity of Alzheimer’s through story” (29). Also Walrath herself escapes the captivity of Alzheimer’s through story: the captivity of the medico-scientific and wider cultural narrative of decline, diminishment and loss. To my mind, Walrath’s reference to Carroll’s “Lobster Quadrille” (47) is most revealing. In this adventure, Carroll’s protagonist offers to tell her experiences on condition of not “going back to yesterday, because I was a different person then”. Living well with the patient comes down to living in the present moment – living within the world and experience of Aliceheimer. When this is not possible any longer, Walrath’s memory of her mother’s old self, Alice, will come to replace both Alice’s memory and Aliceheimer herself.

If this is the first Alzheimer’s disease narrative you pick up you will come away with the feeling of having read a kind of fairy story – about Alzheimer’s through the looking glass. If you read it against the last decade’s caregiver life-writing, you will see it fitting into how adult children increasingly assert their parent’s continued identity and self within dementia. Reading it in the context of nearly thirty years of Alzheimer’s disease life-writing, Aliceheimer’s appears original in its collage approach, and buoyant in its message of how to “bring back the humanity of a person with dementia” (5). But it also matches what has developed into a kind of prototype caregiver dementia narrative. It tells of biographical disruption; searches for continuity for both parent and child; aims at preserving collective memory; presents – as John Wiltshire has discussed in relation to John Bayley’s memoir – “the issues of identity which are implicit in all illness experience with particular acuteness”. Aliceheimer’s is a story about the possibility to find quality of life in dementia caregiving; the possibility to see Alzheimer’s disease as creating a new self, a self that can be lived with and written about up to the moment when we feel threatened in our own self.

 

 

The final review in this series – Alzheimer’s disease and graphic memoirs – will be Sarah Leavitt’s Tangles.

The first in the series – Alex Demetris’s Dad’s Not There Anymore – was posted here.

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185.

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107.

 

Book Review: The Slumbering Masses

3 Oct, 16 | by cquigley

UMN06 Wolf-Meyer Selected.indd

 

Matthew J. Wolf-Meyer, The Slumbering Masses: Sleep, Medicine, and Modern American Life (Minneapolis & London: University of Minnesota Press, 2012)

Reviewed by Steffan Blayney

 

Need a quick recharge? Power up with a power nap. Geniuses like Dali and Einstein loved sneaking in some extra ZZZs.

Opening up my Mozilla Firefox web browser, a cartoon Albert Einstein greets me with this friendly message. Albert’s suggestion – one of a rotation of quirky, entertaining factoids on the Firefox homepage – is indicative of a particularly modern attitude towards sleep. The examples of Dali and Einstein, it implies, show that sleep is not just a period of repose, but something that can – and should – be organised in constructive ways. More than simply providing a break from work or play, sleep can be used to ‘power up’ the sleeper, so that they might make the best and most productive use of their waking hours.

In The Slumbering Masses, anthropologist Matthew J. Wolf-Meyer traces the origins and implications of this and other of our contemporary notions of sleep, charting in particular the rise of sleep medicine in the twentieth century. The book is resolutely interdisciplinary, combining archival research with ethnographic fieldwork in sleep clinics and support groups, as well as numerous interviews with doctors, patients, and their family members. While Wolf-Meyer’s focus is limited to the United States, much of his argument can be applied across the Western industrialised world. The way we sleep, he argues – and the way we think about sleep, both medically and culturally – is the product of a particular combination of historical and social forces, largely coming into play from the late nineteenth century.

While we tend to think of sleep as a natural fact – a human constant across cultures and time periods – recent scholarship has uncovered a rich, and often surprising, history and sociology of sleep. In his 2001 article ‘Sleep We Have Lost’ – expanded in his 2005 book At Day’s Close – historian A. Roger Ekirch revealed that, before the advent of industrialisation, most people in Europe did not sleep in one consolidated period overnight, but more usually in a segmented or ‘biphasic’ pattern of ‘first’ and ‘second’ sleeps, interrupted by a period of wakefulness.

Our conceptions of ‘normal’ sleep provide Wolf-Meyer’s starting point for The Slumbering Masses. How, he asks, have we come to view eight hours of sleep – consolidated, motionless, solitary or with an intimate partner, in a room set aside for the purpose – as, if not an inviolable norm, at the very least the standard to which we must all aspire? Like Ekirch, Wolf-Meyer apportions a large degree of responsibility to industrialisation, and – more broadly – to a particular set of discourses associated with the rise of capitalism. With a nod to Max Weber, Wolf-Meyer devotes a chapter to ‘The Protestant Origins of American Sleep’. Early protestants’ commitment to worldly industriousness, the argument goes, generated a view of sleep as the enemy of productivity. A whistle-stop tour through more than three centuries of American protestant thought uncovers repeated characterisations of sleep as temptation, distraction, or waste of time. In 1690, the Massachusetts preacher Cotton Mather warns his readers that the devil lays ‘his most fatal snares … on the bed, where it is lawful for us to sleep’ (54). A century later, Benjamin Franklin admonishes his elite Parisian friends for their irregular hours, advising a strict routine of four-in-the-morning starts.

The advent of industrialisation and the factory system, with the concomitant requirement to regulate and coordinate large numbers of bodies, saw the question of sleep become a biopolitical problem. It was not the ‘lone sleeper’ but the ‘slumbering masses’ that became the subject of concern and regulation. In the nineteenth and twentieth centuries, Wolf-Meyer argues, ‘normal’ sleep became defined in relation to the spatial and temporal rhythms of industrial capitalism, centred on the working day and the working week. It was increasingly assumed that workers would build up fatigue during the day or over the week, enabling them to sleep for a solid period each night before returning to the factory ready for work. Against this background, alternative forms of sleep became pathologised as ‘sleep disorders’. In this context, the rise of sleep medicine in the twentieth century can be seen as a form of discipline, directed at aligning our bodies with the spatiotemporal demands of industrial society.

The four central sleep disorders discussed in The Slumbering Masses are sleep apnea, insomnia, parasomnias (such as somnambulism, night-terrors, sleep sex, and sleep eating), and narcolepsy. Each of these, Wolf-Meyer argues, is, in their own way, a disorder of time and of space, and a disorder of social life. The body does not sleep when and where it should. Sleep medicine attempts to realign individual’s bodies with the spatiotemporal rhythms of society through therapeutic interventions: behavioural, prosthetic, or pharmaceutical. Its model of treatment is not curative, but regulative, requiring the patient to submit to a regular and ongoing regime of closely monitored, chemically-controlled, or prosthetically-enhanced sleep and wakefulness.

‘An overlooked aspect of biopower’, Wolf-Meyer writes, ‘is the construction of the inevitable over and above its usual insistence on the production of the normal’ (155). The production of knowledge about bodies is concerned not only with what the body should do, but with what the body, by definition, must do: the limits and flexibilities of its behaviours, rhythms and potentials. Disordered sleepers, Wolf-Meyer argues, threaten our expectations about the body’s inevitabilities. Their stubborn refusal to align their bodies with the social demands placed upon them, disturb the very spatiotemporal order of capitalist modernity.

While some cultural critics (prominently Jonathan Crary in his 2013 book 24/7: Late Capitalism and the Ends of Sleep) have argued that the constant demands of technology and the market are destroying our sleep, Wolf-Meyer makes the more subtle argument that capitalism functions to make us sleep more efficiently. Rather than demanding the ‘end of sleep’, the social relations of capitalism require that we sleep in certain ways, and at specified times, so as to make us the most productive subjects in our waking hours. The model of the late capitalist subject, Wolf-Myer argues, is not the insomniac – ‘constantly awake, alert, and productive’ – but the narcoleptic, medicated ‘both to remain alert throughout the day and to sleep soundly at night’ (17).

If Wolf-Meyer’s nuance provides a useful corrective to polemics such as Crary’s, however, he does at times run the risk of ignoring important recent transformations in the structuring of time and space under neoliberal capitalism. In an economic environment no longer governed by the regularities of the factory, the traditional boundaries between work and leisure, production and consumption, day and night, are increasingly flexible. While Wolf-Meyer is critical of theorists who have predicted the ‘end of sleep’, he is perhaps premature in dismissing the ‘twenty-four hour society’ as a failed project. For example, while emphasising a reversal in the late-twentieth century drive towards open-all-hours businesses in the United States, Wolf-Meyer neglects the impact of the internet and mobile technology in ensuring that we are able to remain consumers even when the shops are closed. In the UK, to provide just one example, a recent Guardian article reported a rise of 30% in online shopping between the hours of midnight and 6am.[1]  Moreover, as one of the most interesting passages in The Slumbering Masses explores, one effect of globalisation has been to align the hours of workers in developing countries with the socioeconomic rhythms of Western capitalism, requiring, for example, operatives in Indian call centres to work according to American or European time zones, office hours, and holidays. The implication of this form of ‘spatiotemporal imperialism’ (188) is that our regular eight hours in the West may come at the expense of the disrupted sleep of millions of others around the world.

The Slumbering Masses is wide-ranging in its explorations of sleep and sleep disorders past and present. Interspersed with chapters on the history of sleep medicine and the pharmaceutical industry are often fascinating digressions on, amongst other things, sleep in children’s literature, the career of the ‘sleepwalking defence’ in American criminal law, and the manipulation (or minimisation) of sleep in extreme sports and the military. The downside of this impressive scope, however, is that the book can often feel unfocused. While numerous lines of argument are introduced, not all are followed through, while their relationship to an overall master-thesis is sometimes unclear. Wolf-Meyer’s prose is often dense, and at times frustratingly imprecise. Items of theoretical jargon are introduced with little explanation, only to be jettisoned a few pages later, often with the effect of obscuring, rather than clarifying, his arguments.

Wolf-Meyer’s strengths lie in his ability to combine patient historical research with a concern for the contemporary, and in his anthropologist’s attentiveness to the structures of everyday life. Perhaps due to his extensive fieldwork on the both sides of the doctor-patient divide, he is able to provide an account of sleep medicine that, while critically-informed, is at the same time refreshingly sympathetic, far-removed both from a top-down approach to the history of medicine that disregards the experiences of patients, and from the often caricaturish approach of much medical history, which presents practitioners as no more than the stooges of a nefarious ‘medical imperialism’. Having discussed the numerous past and present forms of sleep that humans have indulged in, The Slumbering Masses ends with a call for a new bioethical stance based towards variation and difference. ‘Multibiologism’, as Wolf-Meyer terms his (perhaps utopian) proposal, would entail ‘a cultural and medical acceptance of nonpathological variation within species, which recognises both society and biology as mutable limits’ (244). With a medical model less tied to an opposition between the normal and the pathological, he suggests, variations across bodies and behaviours might provide the basis for an expanded conception of human potential, and for a multiplication of new possibilities for life and society.

 

Steffan Blayney is a PhD student at Birkbeck, University of London. Twitter @SteffanBlayney.

[1] https://www.theguardian.com/money/2014/oct/10/internet-online-shopping-30-per-cent-rise-midnight-6am-john-lewis

Film Review: Patient

29 Sep, 16 | by cquigley

patient_still_looking_worried_in_hallway-1

 

The ten rules of doctors’ engagement

 

Review of Patient, Colombia, 2015, directed by Jorge Caballero

Screening at the London Film Festival, 15 and 16th October 2016

https://whatson.bfi.org.uk/lff/Online/seatSelect.asp

https://whatson.bfi.org.uk/lff/Online/mapSelect.asp

 

Reviewed by Dr Khalid Ali, Screening Room Editor

 

The Oxford Dictionary defines the word ‘patient’ as ‘a person receiving or registered to receive medical treatment’. Jorge Caballero uses ‘patient’ as the title for his documentary film, but we never get the see the patient, Leidy, a 23-year old girl who is bed-bound with an aggressive form of neuro-ectodermal tumour. The focus of the narrative is Nubia, Leidy’s long-suffering and ‘patient’ mother. Nubia is constantly with her daughter, pushing her hospital bed around to chemotherapy sessions, and for never-ending x-rays. When the doctors declare that the cancer is in its most-aggressive and terminal stage, Nubia decides to take her daughter home. However, first she needs an adequate supply of pain-relief medication. Securing these crucial medicines for Leidy’s comfort and dignity is a never ending quest between several hospital departments for official approval. Finding an ambulance to take them home is another harrowing exercise in endless bureaucracy. Nubia’s exhausting daily routine is only interrupted by brief moments of following ‘Colombia’s top model’ contest on TV.

Watching Patient reminded me of this statement from the Hippocrates oath: ‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug’.

Here are the ten lessons that doctors can learn from ‘Patient’:

*Don’t be afraid to say ‘I don’t know’, if you don’t know, don’t waffle: In one scene a junior doctor tries to comfort Nubia by asking her to keep ‘calm, be positive and tranquil’ when she was actually asking for an honest opinion of her daughter’s prognosis.

*Avoid jargon: in another scene, doctors explaining a possible tracheostomy tube for Leidy is a master-class in communicating the need for a complicated procedure with its associated risks and benefits- sensitively handled, ensuring understanding and offering the chance for questions and comments.

*Show empathy towards patients and their families: in several exchanges between Nubia and doctors caring for her daughter, it was clearly obvious that she was desperately seeking a professional to hold her hand in empathy.

*Reassure patients and families when dealing with intractable pain, and encourage them to ask if pain is not controlled: Nubia was constantly blaming herself for not getting the dose of pain relief right. She never questioned the hospital doctors’ prescribing competency.

*Plan ahead and get medications ready for a timely discharge: Booking an ambulance, getting the insurance paper work ready, and collecting her daughter’s medicines on the discharge day was a ‘mission impossible’ for Nubia.

*Respect patients’ confidentiality: In a sensitive approach to Leidy’s agony as a young girl at the end of her life, the film director never shows her face in a powerful statement of maintaining her dignity, and upholding her capacity in choosing not to be filmed.

*Care for the carer: after grilling journeys between various hospital departments, and home trips to get Leidy what she needs, it was apparent that Nubia wanted someone to ask her how she felt, and perhaps suggest some respite.

*Offer spiritual support: no mention was made of Nubia’s spiritual beliefs or if she practised any religion in the film. It might have been something that she was afraid to ask for! So as a doctor, do not forget to ask.

*Encourage patients and their families to share their hospital experience with each other: in a brief encounter with a fellow mother of another girl in hospital, Nubia gets to exchange a few tips on how to handle their ill daughters ‘crises’. Through this ‘solidarity and companionship’ both ‘patient mothers’ experienced a transient sense of support.

*Life can be short, so value every moment.

 

 

Address for correspondence

Dr Khalid Ali: Khalid.ali@bsuh.nhs.uk

Book Review: Dad’s Not All There Anymore

26 Sep, 16 | by cquigley

 

This is the first of a series of comic book reviews on the theme of Dementia. Reviews of Sarah Leavitt’s Tangles and Dana Walrath’s Aliceheimer’s to follow.

 

Demetris Cover

 

Dad’s Not All There Anymore by Alex Demetris

 

Reviewed by Harriet Earle

 

As an academic, I have a love-hate relationship with Wikipedia. I tell my students to steer well clear and never to rely on it for anything but the most cursory glances at a subject. However, I will admit that I use it regularly (and, in the website’s defence, the references can often be very helpful). There is absolutely a place in academia – and in life – for Wikipedia’s accessible and easy synopses. It is likely that, were I to require information on Lewy Body Dementia (LBD), I would soon be typing it into my phone’s app. However, one central thing that is missing from Wikipedia is heart. An encyclopaedia is not meant to be an emotional and emotive document; it’s aim is to inform, not to evoke emotion. However, when one is talking about many topics, such as LBD, the basic definition (or even an exhaustive medical definition) does not give any space to the consideration of the experience of the condition.

This is where Alex Demetris’ comic Dad’s Not All There Anymore comes in. Demetris illustrates his father’s diagnosis and eventual move to a nursing home. Demetris’ book is devastating and heart-warming. He tells the story through the figure of John. When the narrative opens, we are visiting John’s father, Pete, in a nursing home. John speaks gently to two other elderly residents, one of whom is supine on the floor, before meeting his mother, Sue, in his father’s room. The chronology of Pete’s illness is told in flashback; we follow him from diagnosis with Parkinson’s in 2003, to the diagnosis of Lewy Body Dementia in 2007 and the progression of the illness until John barely recognises his father. The personal story is interspersed with carefully worded explanations of the condition, its genesis and development that are pitched perfectly for readers who are not medics. This is the true success of this comic – that Demetris is able to create a work in which his father’s unique story and the more generic definitions of LBD sit in conversation with each other. We are in no doubt that this is a personal story and that it is the individual nuanced experience of the disease that is the focus, while the medical information exists within the text as an informative touchstone for the non-medic reader.

Demetris’ artwork is both expressive and simple. Plain line drawings with very little excess details are highlighted by shades of yellow-green. In places, there is a flash of red. When Pete starts to hallucinate a small red-haired child, she lurks as a faded red and creepily expressionless figure; she is almost a ghost. In another instance, Pete asks John what he sees in the corner. John sees a rack of coats; Pete sees the bright, terrifying face of a clown, to the horror of the clown-phobic John. In curious contrast to the muted and gentle colouration, the panels themselves are crowded. Each page contains at least 6 closely-packed panels, each one filled with a bustling image, topped with a caption or bubble or both. There is a lot to take in – both image and text – and at times the effect can be overwhelming. Where to look? What to read first? I would not wish to suggest that that chaos engendered by the reading experience can come close to mimicking the full horror and disorientation of LBD but it may go some way to mimicking the mental upheaval of supporting a family member.

All comics artists have a style and in that style is a peculiar ‘something’ that stands out. For Demetris, it is his exquisite use of eyebrows to create expression. In my own research, I have written about the importance of the eye as a frame to govern the emotion of the face within the panel. Demetris’ characters have no eyes, only small representative dots, and so it is for the eyebrows to do the talking. It is impossible to overstate how expressive Demetris’ characters are, a feat that is particularly impressive, given the limited use of detail in their faces. In the visually congested panels, the clearly rendered eyebrows on each face guide the narrative and emphasise the humanity of the characters, in moments of both comedy and tragedy.

Ask most people to name something that terrifies them and they are likely to rank dementia high on that list. I imagine that watching a loved one battle with dementia is equally terrifying. In the carefully rendered faces of John and Sue, there is immeasurable warmth. Indeed, one of the most striking features of the plot of this comic is the seemingly unwavering devotion of both characters to Pete and their tremendous patience with him as the disease progresses. It is one thing to say of a sick family member “he doesn’t mean to be trying, he’s not well – I will not hold it against him” and quite another to live these words and embody them. Demetris is not telling just any story of LBD, he’s telling his father’s story. The personal nuances of the story are the central focus of the narrative and the most compelling part of it. Pete was a teacher and regularly admonished his son for using the word ‘innit’ (“Don’t say ‘innit’ – it’s bad English”). At the book’s close, there is a final glimpse of the old Pete and his grammar policing ways (“… shouldn’t say ‘innit’… bad English…”). LBD may have him on his knees but he is still there and it is to this that his family cling. This is the heart; this is what moves this text beyond the crisp, cold definitions offered by Wikipedia and other encyclopaediæ. Instead of receiving the bare facts, the reader receives an insight into the day-to-day experience of the disease and the ravages it brings to bear on the individual and those around them. Demetris has etched out a fine line between text book and autobiography and is walking it with skill, panache and immense heart.

 

Dad’s Not All There Anymore by Alex Demetris is available from Singing Dragon Publishers.

ISBN: 978-1-84905-709-7

Price: £7.99

 

Related Reading

David M R Orr, Yugin Teo. Carers’ responses to shifting identity in dementia in Iris and Away From Her: cultivating stability or embracing change? Med Humanities 2015;41:2 8185

Martina Zimmermann. Deliver us from evil: carer burden in Alzheimer’s disease. Med Humanities 2010;36:2 101107

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