Malignant: How Cancer Becomes Us by S. Lochlann Jain. Berkeley: University of California Press, 2013.
Reviewed by Mary Anglin, Department of Anthropology, University of Kentucky
At the age of thirty-six, Lochlann Jain embarked on a journey for which neither her anthropological training nor her upbringing as “a reticent Canadian” and the daughter of a physician could fully prepare her. Diagnosed with advanced breast cancer, but only after a protracted effort to have her health concerns taken seriously, Jain next undertook an aggressive course of treatment comprised of double mastectomy, radiation, and chemotherapy. Thereafter she sought healing and “new vocabulary” through her involvement in support groups and retreats, as well as a relentless succession of funerals that attested to cancer’s gravity and the significance of community. Nonetheless, it is the ordinariness of that experience which Jain has chosen to highlight through her account of how “cancer has become a central, silent, ubiquitous player in twentieth- and twenty-first century America” (2013:5).
Cancer’s iconic status in the United States, and that of breast cancer more specifically, is exemplified by such events and textual representations as the proliferation of first-person narratives, beginning with Rose Kushner’s Breast Cancer: A Personal History and an Investigative Report (1975) and Betty Rollin’s First, You Cry (1976); President Richard Nixon’s declaration of a “war on cancer” with the National Cancer Act of 1971; the maturation of sociological and anthropological analyses of cancer, as well as those of public health and clinical researchers; and, more recently, the tipping point of saturation by cultural/commercial imagery which Barron Lerner (2010) has dubbed “pink ribbon fatigue.” From the outset, journalists like Kushner and Rollins did more than connect the personal with the political, to borrow the phrasing of the time. They altered lay and professional understandings of the disease, and inspired generations of advocacy. In a quest to separate biopsy procedures from the surgical treatment of breast cancer, for example, Kushner challenged the singular authority of the physician and championed patients’ rights to informed consent. Ten years prior, electing not to disclose her own health status lest her research findings appear biased, Rachel Carson (1962) had called attention to the dominance of the chemicals industry, as well as the magnitude and range of effects from environmental contamination. Cancer etiology turned out to be a political, as well as a scientific, question.
Carson’s influence yet carries forth through the work of self-styled cancer activists as well as environmentalists, public health practitioners, anthropologists, etc., to explore the systemic implications of exposure to that toxic soup: among them, a rising tide of cancer diagnoses in the late twentieth century. American biomedicine’s continued emphasis on traditional or behaviorally focused risk factors to explain the incidence of cancer has also become a topic for public debate and scholarly attention, as has the evolution of a highly powerful, lucrative arm of health care centered around cancer detection/treatment and the politically charged matter of who has access to those services. Likewise, the promotion of pink ribbon culture has received popular and academic scrutiny—not only for its infantilizing logic, but equally its place in the profitable arena of cause marketing and the displacement of attention from uncertainties that still surround breast cancer as an object of knowledge and a diagnosis.
To these discussions, Lochlann Jain brings a distinctive outlook, part anthropological and part autobiographic, which she characterizes as “living in prognosis.” To live in prognosis is to be subjected, without bidding or control, to the “rifle’s spray of statistics” that establish the odds of survival for a given disease. It is a liminal space, summoned forth by the actuality of diagnosis, which Jain (2013:45) has compared to “walking before the firing squad. I am alive. No you are dead.” That vantage point allows no room for glib optimism or the idea of survivorship as a “moral calling” except insofar as health outcomes are inexorably tied to economic factors and social valuation (2013:30-1, 57). And, finally, it is a site for the production of knowledge, most notably about the relationships—“economic, sentimental, medical, personal, ethical, institutional, statistical”—that establish cancer as a social field (2013:4).
In this remarkably forthright book, Lochlann Jain recounts various aspects of her diagnosis with, and treatment for, breast cancer that made the experience depart so vividly from official narratives of biomedical expertise and success. From each “curl of feeling,” Jain “worked [her] way backward from the discomfort to the structures that organized it” (2013:22). Foremost is her anger at the physicians who refused to order a biopsy, since she was a young adult and deemed to be at minimal risk, and her reflections on the counterfactual. “What if” her tumors had been detected sooner and at an earlier stage of disease? Did Jain’s dark complexion and identity as a lesbian have some bearing on the delay? Why wouldn’t the doctors’ errors meet the legal threshold for a “lost chance at survival,” and what does this say about patients’ rights (2013:102)? How have doubt and the absence of definitive information come to be treated as forms of knowledge that justify contemporary economic, legal, and medical institutional arrangements? What are the effects, viewed in terms of the social production and normalizing of cancer—as something that just happens?
At times, Jain’s analysis verges on polemic, as with her description of the “pervasive social taboo” against recognizing the link between environmental pollutants and cancer (2013:190). She usefully points to vested commercial interests, along with the notable failure of U.S. regulatory agencies, as a part of that silence (2013: 5-6, 188-90). Jain’s argument is less persuasive about the complicity of “many Americans”—in supporting the U.S. economy over and against potential health concerns—or the inadequacies of cancer activism (2013:185, see also pp. 86-7). How does one step outside of capitalism? Moreover, little mention is made of the campaigns of women (and men) from New York, Massachusetts, California and across the U.S., sometimes in coalition with environmental justice organizations, to “stop cancer where it starts” by promoting the precautionary principle; providing public testimony; pressing for municipal and state regulation of synthetic chemicals; and conducting research in the public interest through “laboratories of their own,” as with the Silent Spring Institute named for Carson (http://bcaction.org/; http://silentspring.org/about-us; http://www.breastcancerfund.org/clear-science/). Yet these efforts have been significant and are clearly distinguishable from corporate strategies to market sports cars or foundation fundraising activities that “drown… breast cancer in a sea of pink” (2013:86, see also pp. 67-69, 78).
Still, in the finest sense of autoethnography, Jain has created a poetic, deeply resonant portrait of her journey from the view of cancer as an exceptional state, associated with a “different genre of person,” to reflections on the grief, heartbreak and loneliness of living with—and dying from—this disease (2013:216, 220). Through the communal spaces of retreat, Jain learned about the power of self-representation and of bearing witness to the suffering of others. As she observed, “Unlike academic work, which needs to be critiqued to gain credibility and meaning, this work needed only to be heard” (2013:218). Stepping outside the discursive strategies of official accounts, Lochlann Jain has found a way to place individual and collective experiences, with their acknowledgement of sorrow and pain, back into the cultural narrative of cancer. More than elegy or memoir, Malignant provides an incisive, necessary social critique.
Rachel Carson, Silent Spring. New York: Houghton Mifflin, 1962.
Rose Kushner, Breast Cancer: A Personal History and an Investigative Report. New York: Harcourt Brace Jovanovich, 1975.
“Me and Earl and the Dying Girl”, USA 2015
Directed by Alfonso Gomez-Rejon
In UK cinemas now
American cinema has always been fascinated by stories of cancer in young people; Love story, USA 1970, (https://en.wikipedia.org/wiki/Love_Story_(1970_film), 50/50 (USA, 2011) https://en.wikipedia.org/wiki/50/50_(2011_film), and more recently “The fault in our stars, USA 2014” https://en.wikipedia.org/wiki/The_Fault_in_Our_Stars_(film).
The first feature film from director Alfonso Gomez-Rejon “Me and Earl and the dying girl” explores similar themes of terminal illness, this time “leukaemia” in a young girl, Rachel (Olivia Cook). Gomez- Rejon made the film based on a book of the same name by Jesse Andrews as a tribute to his late father. The film was praised for its bold and unconventional but charming take on cancer, winning the Grand Jury Prize at Sundance Film Festival in January 2015.
The Lumen is an annual Edinburgh University new writing and arts journal of the mutual dialogue between medicine, the arts and the humanities. We hope to foster creative and critical discourse on the personal experience of illness and healthcare. The Lumen will provide a space for the expression of the deeply personal narratives of the medical encounter, from patients and healthcare professionals alike, and the aspects of the human condition that it exposes. We are pleased to announce that we are now accepting submissions for the Summer 2016 issue of The Lumen. The theme for this issue will be ‘Trauma’.
Contributors are welcome to interpret this theme in any way they wish along the lines of any discipline. We also welcome reviews of books or other artistic work that deals with a discussion of trauma or narratives that emerge thereof. Some possible interpretations of this theme could be:
The impact of a traumatic event or process on identity and temporality
Narrating and coping with traumatic events
Talking about trauma in public discourse
The form and essence of traumatic change
Trauma as a permanent state of being rather than a singular, momentary breach
The trauma of internal processes rather than external intrusions
Historical, political or socio-symbolic forms of trauma
The above list is not exhaustive, and is merely indicative of some of the possible interpretations of the theme for the forthcoming issue. Contributors are welcome to interpret the theme however they like.
We welcome submissions in the following categories:
1) Fiction: Short fiction which is no more than 3,000 words in length and can be written in any style or genre. Stories should be stand-alone and complete works.
2) Non-fiction: Narrative/memoir or essays (either critical or academic) that are no longer than 3,000 words in length.
3) Poetry: Poems that are no longer than 70 lines in length in any style, genre or form.
4) Reviews: Short reviews of one work (between 500 and 750 words) or comparative reviews of two or more works (between 750 and 1,000 words). If you would like to review a relevant literary or artistic work or performance, please contact us with a proposal via email and we shall consider it. Alternatively, we will also post a list of works we would like reviewed on our web site.
5) Visual Art: All forms of visual art (illustrations, photographs, et cetera), submitted as digital images (preferably high-resolution .jpeg) of up to 10 MB in file size. Please include the title, date, medium and size as applicable. If you should encounter any difficulty in sending us images via email due to file size, please contact us to arrange an alternative mode of submission.
The deadline for submissions for this issue is Friday, 4 December, 2015. All submissions must be sent on or before this date via email to LitMed.Magazine@ed.ac.uk.
In addition, The Lumen also welcomes contributions for its blog (http://edmedlit.wordpress.com/lumen) on a rolling basis. These contributions can also be stories, poetry, essays, reviews, et cetera as per the guidelines below. These need not necessarily relate to the theme for the print issue, and can be on any subject or theme. We are also open to suggestions for blog posts. Please feel free to contact the editors at the above email address if you would like to make a suggestion for a piece.
For further details, please refer to the full Call for Submissions at http://edmedlit.wordpress.com/lumen/cfs. Any queries regarding submissions can be addressed to the editors at LitMed.Magazine@ed.ac.uk.
Reviewed by Vivek Santayana, Postgraduate student in Literature and Modernity, The University of Edinburgh
James Rhodes’s controversial memoir, Instrumental, is about many things. On the one hand, it is about the trauma of child rape. There is an ethical dimension to the way this book talks about the trauma of child rape, suggested by its use of an epigram from US Marine Corps veteran Phil Klay about honouring stories of victims. This memoir is, in some respects, about a victim of severe trauma speaking out about his experience. Rhodes describes, with terrifying candour, his lifelong struggle of dealing with the catastrophic events of his childhood and the self-destructive state of victimhood the experience left him with for almost all of his life.
On the other hand, as Rhodes emphasises in the preface (and in his interview on Newsnight on 20 May), this is also a book about the power of music, and is intended to serve as a rejoinder to the bastardisation of the classical music industry. Supplementing this is a playlist of the many pieces discussed in the book, available free on Spotify (http://bit.do/instrumental). Woven through this discussion of music is the harrowing story of Rhodes’ life, which he sees as the ultimate example of the profound and transformative impact music can have on one’s life, and how artistic expression gave him both the hope and the means for coping. Instrumental is nevertheless deeply complex, not just because of the difficult and painful main subject matter, but also because it challenges the expectations that might arise from classifying the book as either about trauma or music. What made this book particularly challenging for me was how rapidly it alternates between both of these narratives. This is a personal account of Rhodes’s life, and the sudden shifts in tone and texture serve to emphasise that the traumas of his past and his musical career are equal and contiguous parts of his life. There can be no clear demarcation between the one and the other, both in narrative and in practice.
Reading this book, it is important to bear in mind the context in which it has appeared in print. Publication came after a protracted legal battle between Rhodes and his ex-wife that lasted over a year, ending in May 2015 with the Supreme Court overturning the Court of Appeal’s decision to grant a temporary injunction on publication. It is open to interpretation whether or not Rhodes’s insistence that this is a book about music is in some ways an attempt at negotiating this censorious legal climate. However, even with the greatest of sensitivity to the parties involved and the greatest of care for their security and privacy, there is a sense in which preventing Rhodes from telling his story would in some ways be a repetition of the same attitude of secrecy and shame through which victims of abuse are silenced, much as Rhodes himself was when he was a child. Rhodes’ voice, when telling the story of his abuse, is inflected by these circumstances.
While he states quite passionately that music is what saved his life, there is a sense in which this is not an entirely accurate conclusion to draw from the story that Rhodes presents. He describes in great detail his experience of abuse, and subsequently his struggle with the self-destructive cycle of victimhood, self-harm, depression, breakdowns, suicide attempts, drug abuse, alcoholism and dysfunctional relationships. He elaborates on what he considers the numerous symptoms of chronic sexual abuse – OCD, dissociation, visual and auditory hallucinations, hypervigilance and eating disorders – as well as the painful process of his treatment through reparative surgery, forcible institutionalisation, therapy and, of course, music, which is one of the more significant contributing factors to healing. Music gave Rhodes something positive to aspire towards, as well as a sense of security and achievement that comes with a rigorous regime of practice and successful performances. Many of the experiences he describes, like the first time he heard Bach’s Chaconne from the Partita for Violin No. 2 transcribed for the piano by Ferruccio Busoni (36), the sense of comfort and security he felt when sitting at a keyboard the first time he performed live (113), the ‘spiritual epiphany’ he experienced when he smuggled an iPod into a psychiatric ward and listened to Bach under the sheets (133), as well as his experience of recording his first album (163), exemplify the transcendental power of music to heal. Rhodes claims that ‘creativity is… one of the most profound ways through trauma’ (225). However, despite his passion for music, there were times when his career as a musician, and the pressures and frustrations involved therein, only served to aggravate his condition. The transcendence and escape afforded by music were temporary, and he ultimately imploded again in a similar manner to before.
In addition to music, there were numerous other factors that contributed to Rhodes’ on going recovery, the most important being the birth of his son. Moreover, while he is quite scathing about mental health facilities in Britain (which he describes through allusions to Ken Kesey’s One Flew over the Cuckoo’s Nest in terms of their lack of empathy and their over-reliance on medication), it is clear that the private facility that he went to in Arizona, with its emphasis on therapy and support groups, was also vital for his treatment. Similarly, the relationships he formed with his son, manager, new partner and some of his closest friends, and their kindness and generosity in his time of need, were crucial to his recovery. While music did have a profound impact on Rhodes’ life, and while creative expression is a powerful mode of therapy, he is circumspect about claiming it as his sole miraculous, transformative force, and emphasises that music is one of many things in his life, along with psychiatric treatment, medication and support and empathy within a broader community, that are part of his ongoing recovery.
Rhodes’ narrative is conscious of its chaotic nature and sense of artifice. This is most strikingly observed in the preface, where Rhodes imagines the morning in which he writes the book as if it were a play in which he, quite graphically, commits suicide, leaving a shocking note to his partner (xvi-xviii). Interspersed within the memoir are a number of self-referential remarks that emphasise his awareness of how the story is an attempt to structure his experience into a coherent narrative. The narrative voice frequently vacillates between suffering and joy, such as when a sublime experience of listening to Bach in a psychiatric ward is juxtaposed with a botched suicide attempt, or when graphic descriptions of self-harming are followed immediately by lyrical descriptions of music. In the most unexpected of moments, the narrative is laced with a bleak sense of humour. The texture of this narrative, with its uneven tone and the sudden, drastic changes in mood, are especially important in the way they embody the disordered nature of Rhodes’ experience.
It is tempting to romanticise the notions of mental illness and suffering and see them as intertwined with creative expression. I found one of Rhodes’ remarks quite troubling, when he states in the context of Robert Schumann that ‘composers and mental illness go hand in hand’ (193), although it is quite probable that this is meant to be ironic. Evan Davis, when he recently introduced Rhodes on Newsnight, made a similar connection between suffering and musical talent, describing Rhodes as having a ‘tormented soul’ that ‘comes out in his music’. The notion that mental illness is in some way constitutive of genius – that it gives access to some heightened state of aesthetic sensitivity – is a dangerous oversimplification of the experience of mental illness. However, Rhodes’ narrative complicates this romantic image of the tortured genius. His celebration of composers’ lives and works is contrasted by the self-deprecating tone that he adopts while describing his own struggles when attempting to make music. Rather than depict his suffering as eventually culminating in his musical talent, he describes his experience exactly as it is, and instead suggests that music is a way of healing. When he discusses the lives of various composers, he does so to emphasise how music can be a source of hope when dealing with trauma and pain. While talking about his own life, Rhodes avoids the romanticised notion that all artists are tortured individuals, or conversely that all suffering leads to artistic excellence, and his attitude towards art and music needs to be considered in this light.
As promised in the preface, Instrumental does indeed contain a strong and broad focus on music. The later chapters are a scathing criticism of the Classical BRIT Awards, the snobbery of the gatekeepers of high culture and the dumbing down of the music. It also describes Rhodes’ ambition to start a new record label as part of a campaign to broaden access to classical music, to improve music education and to reverse the tide of the decline he describes. His story of dealing with the trauma of child rape becomes part of this argument, demonstrating the profound impact music can have on one’s life and why it is of paramount importance to save it. His campaign to change the music industry is as significant to his career as the trauma he suffered as a child. This goes to show that Rhodes’ life story, and the way he writes about it in his memoir, is about much more than just giving voice to a traumatic experience, as he shares his experience of being able to live through the trauma and of finding a positive and lasting outlet for his creativity.
Rhodes, James. Instrumental: a Memoir of Madness, Medication and Music. Edinburgh: Canongate, 2015.
—. Interview by Evan Davis. Newsnight. BBC, London: 20 May 2015. Television.
As part of the British Film Institute- BFI’s Britain on Film Project (www.bfi.org.uk/britain-on-film), the Maggie, (1954), one of the most endearing comedies made by Ealing Studios, has been digitized and re-released online and on DVD.
I was recently involved in a project which explored the histories and memories of St. Davnet’s Hospital, Monaghan. St. Davnet’s was founded as the Cavan and Monaghan District Lunatic Asylum in 1869, and its name changed to ‘Monaghan Mental Hospital’ in the late 1920s, and later to ‘St. Davnet’s Hospital’ in the 1950s. I was involved in this project through my engagement with Stair: an Irish Public History Company Ltd. This was a company which I co-founded with colleagues from the UCD School of History and Archives, with the support of Nova UCD. We saw the project advertised on etenders.gov.ie and put a bid together. The final project involved a number of strands, including an archives scoping exercise, the production of a book on the history of the site based on the archives, an oral history project, a community engagement project and primary schools programme, and the development of an exhibition on the history of the site at Monaghan County Museum. We were extremely lucky to have Monaghan County Museum as partners on this project, as they shared essential expertise, as well as part of their collection for the exhibition. Preparing an exhibition on the subject of mental health and mental illness, and on the history of one particular institution within the local town was not without challenges and difficulties. I wanted to write about the decisions that we made in selecting objects and stories for the exhibition, and in how we structured the overall narrative of the exhibition. Some further information on the project can be found here, in a site created by project manager and oral history lead researcher Fiona Byrne.
Nuts and bolts: We had a modest budget for the exhibition, which largely went towards the printing and production of panels for the exhibition, the creation of replica outfits and uniforms, and design and print of the catalogue, and other display-related costs (such as the glass heads for displaying nursing caps, above). We were lucky to be able to use the display cases, space and lighting at the museum, which cut down costs considerably. Some of these costs were also shared with the museum, which will be hosting the exhibition for a year. Installation and conservation of some objects brought from the hospital campus were taken care of by museum staff. As objects in the exhibition came from the hospital campus, from the museum collection and from private family donations, we needed to carefully document the provenance to avoid confusion at the end of the process.
Putting the collection together: As with many exhibitions, the final selection of objects reflect a series of compromises between what we wanted to include, what we had access to, what we felt was appropriate to include, and what we could physically deal with in the exhibition space. Interestingly, our own process of creating the exhibition reflects that described by several of the contributors to the volume of essays Exhibiting Madness in the Museum: Remembering Psychiatry, edited by Catharine Colebourne and Dolly McKinnon. As in many of the cases outlined by Colebourne and McKinnon, we found that the history project commissioned by the HSE was precipitated by institutional change, with the hospital closing for admissions in 2012. The large site is now mostly used for administrative and community care purposes, with some long-stay patients still living in one ward. The ‘collection’ of the hospital was largely put together and defined in the process of creating the exhibition – again reflecting several of the examples mentioned by Colebourne and McKinnon. Throughout the process of talking with former and current members of staff, certain objects and spaces were marked as significant and important carriers of memory, and were included in the site. These included, for example, the Monaghan Mental Hospital fire helmet, the brown straitjacket and the large wooden table in the laundry building. Other objects were selected as part of our own investigation into the site, for example, drama trophies that had been presented to the St. Davnet’s Players and the Belfast sinks from the laundry. Some objects, such as the staff ration box from the early twentieth century, or nursing certificates and medals, were donated by former staff members living locally, who were extremely interested in the history of the site and who were very involved in the exhibition. Several items in the exhibition had already been collected by the museum – these included the chalice and paten from the asylum, an early wooden ECT machine, examples of modified knives and forks for patient safety, and a staff white coat from the 1960s.
The archiving process in place at the hospital also created something of its own collection – while this largely involves highly confidential hospital records, which will be archived, stored and managed by the National Archives, it also included architectural maps, plans and drawings, and a collection of personal effects, such as hair pins, pocket watches, rings, glasses and religious medals. These objects were removed from patients on entering the asylum or hospital – in many cases, they were returned, or returned to family members following the death of a patient. The personal effects that remain, therefore, are likely to have belonged to people who had been patients in the asylum or hospital, and who died there without relatives to claim their possessions. These items provide a very personal connection to the lives of those who experienced life within the walls of St. Davnet’s. The idea of personal effects has also been explored by artist Alan Counihan in his exhibition at the Grangegorman campus, another of Ireland’s large-scale Victorian asylum buildings. The use of personal items representing the transition between everyday life and the life of the asylum or hospital can also be seen in the exhibition ‘The lives they left behind: suitcases from a state hospital attic’, based on the suitcases of personal effects found at the former Willard Psychiatric Centre in New York State. Important items within the archive at St. Davnet’s also include the first admissions register and the first minute books of the asylum – the admissions register was included in the exhibition, but it was closed and locked to protect the privacy of those named.
The ‘World Within Walls’ project involved communication with members of the local community, former staff members, and former and current service users – reflected in the oral histories which were available via listening posts throughout the exhibition. An important part of the collection came from the items which had been kept by the families of former staff as important mementos of their time there. These will return to the owners at the end of the exhibition, but form an essential part of the overall collection represented in the museum. These items included very personal items, such a teapot given by a patient to a member of staff by patients and staff at the hospital on the occasion of her marriage, and a lace collar which had been given to the mother of the same staff member, made by a patient. Other items included official items, such as a key book which would have been held by the gatekeeper, recording each key being checked in and out, nursing exam slips, prizegiving booklets, photographs of sports teams and drama groups, nursing pins and certificates in both English and Irish. This brief description gives some sense of the variety of objects which were included in the exhibition collection, and the different processes by which they were collected.
Creating a narrative: One of the challenges in putting an exhibition like this together was to find a way to create a narrative which was both historically informed, and which presented information in a clear and valid way to visitors, without avoiding or over-emphasizing judgements on past practices in mental health care in Ireland. It is very clear that, from our contemporary position, many of the practices in mental health care were unacceptable, and many of those who were committed to institutional care could and should have been cared for at home. Indeed, many of those committed should never have been committed in the first place, while it is clear that others did need institutional care. The history of asylums and mental hospitals are inextricably linked to broader social histories of families, of sexuality and ideas of sexual morality in the country, and ideas about mental health and illness. We needed to find a way of presenting histories within their historical context, providing as much information as possible about the broad social context and contemporary ideas about mental health care in order to allow visitors to make up their own minds. This was absolutely essential as visitors to the exhibition, located in a local authority museum, would almost certainly include former staff members, former service users, current service users, and family members of both groups. Ideas of appropriate mental health care have changed radically, and we wanted to present information as accurately, sensitively and appropriately as possible. While certain groups – particularly former staff members – often had very positive memories of working on the site, where they formed strong friendships and often met their life partners, this had to be balanced with the (harder to source) memories of patients and service users, which were often more mixed, and could be negative. In presenting these differing views on such a recent, and profoundly local history, we wanted to make sure that each view was adequately represented equally, allowing people to explore them and to make up their own minds about the histories and memories being presented.
We were also mindful of the advice given by curator Nurin Veis in Colebourne and McKinnon’s book, mentioned above. According to Veis, ‘in presenting narratives of psychiatric history a curator must examine and determine whether one particular story is being emphasized at the expense of another. There is sometimes a tendency in museum displays to perpetuate the concept of past gruesome medical horrors in order to venerate the successes of modern psychiatric medicine’. We absolutely did not want to fall into the trap of emphasising the most negative aspects of the history of the site. It was overwhelming clear to us throughout the research process that a lot of genuine care existed within what could be a very harsh system. We found that there was sometimes an expectation that the very worst would be emphasised – that the history of this institution would be similar to the absolutely horrific institutional histories being uncovered with regard to the Mother and Baby Homes and the Magdalene Laundries, for example. While there were, undoubtedly, many examples of unjust and sometimes horrific treatment within institutions of mental care, these must be balanced with a representation of daily reality. At the end of the process, it felt to me that the greatest injustice was the boredom, monotony and loss of liberty and self-determination suffered by many patients, particularly up to the 1960s. We wanted to present this history fairly and honestly. In trying to understand these systems, it can be difficult for people to accept that there was no one driving force, no one figure or institution that can be vilified and perhaps punished, but rather a whole range of social forces that contributed to the situation. At some of the public events where we presented our ideas for the exhibition, we sometimes felt under pressure to fit this history into a larger story of institutional abuse in Ireland – whereas there are some points of connection, it is a very different history, and must be engaged with on its own terms. The local context for the exhibition was also in our minds in creating these narratives – together with the advice given by Veis, we were loath to perpetuate stereotypes about what happened ‘inside’, risking reinforcing stigma around mental illness and mental health care. The balance between providing accurate and accessible information about life within the asylum and the hospital without falling into potentially damaging stereotypes was certainly a challenge for the exhibition team (myself, Fiona and Liam Bradley, curator at Monaghan County Museum, supported by the staff there and the steering committee of overall project led by the HSE).
In the end, we decided to focus on the shared life experiences ‘within the wall’s of St. Davnet’s through a number of key themes, rather than trying to deal with patient and staff life separately. This emphasis on the lives and experiences of those who spent so much of their lives within the walls of the hospital was signalled by the first object encountered by visitors – a replica of a female patient uniform (made by a local dressmaker using early 20th century photographs as a guide, as no originals remain). This decision reflects the fact that patients, on first entering the asylum or hospital, would have had their clothing and personal belongings removed, been given a hot bath, and the serviceable but anonymous uniform of the hospital. The themes chosen were ‘Building St. Davnet’s’ (maps and plans, an overview of the site, a timeline with major events within the hospital, put in context by major national or world historical events, a video walk-through of the site which provided an overview of the buildings and campus as it exists, an interactive map which people could use to orient themselves around the campus, and an 18th century book of maps which showed the site in relation to Monaghan town before the asylum was constructed). If you are interested in this aspect of the history, you can read my essay from the book on the asylum and hospital architecture here. The next section focused on the ‘World of Work’, and explored the kinds of work carried out by both patients and staff on the hospital grounds. The objects chosen for this part of the exhibition included sinks, a large wooden table and a fabric brand used in the hospital laundry, a place where many female patients would have spent long hours working, a fire helmet from the hospital fire brigade, a whistle used in reporting escaped patients, as well as images of staff in uniform, reflecting changes throughout the years. Information from the archives on staff and patient work (including when patients started to get paid for their work) was on the panels – we did not include any photographs of identifiable patients or service users in order to protect anonymity, but aimed to represent their experiences as fully as possible from the archives. The oral histories were an important part of this section, reflecting memories of work on site in the farms and on the wards. We also included a section on the well-known ‘Soviet’ or strike at St. Davnet’s in 1919, led by Peadar O’Donnell, and a section on nursing, including information on training, exams and everyday patterns of life as a nurse on the wards.
The next section was based on ideas of illness and recovery, and included a bed from the hospital, an early ECT machine and handbook on nursing and mental illness, as well as key information on reasons for committal, types of treatments used (including highly controversial treatments such as insulin comas), and experiences of illness that crossed the boundary between staff and patient, such as the Spanish Flu and the TB epidemic in Ireland, when part of the new buildings were used as a TB hospital for a period of time. We used doors from the hospital as dividers between the exhibition sections – many of the visitors to the site itself during a Heritage Week tour in August 2014 remarked on the sense of repetition and monotony produced by the endless wards and doors throughout the vast complex of buildings – while we could not replicate this within the temporary exhibition space at the museum, we tried to give a sense of the internal environment by using these doors, and also through the video walk-through, the use of hospital screens from the campus, a commissioned soundscape which gave an idea of the aural environments on site, and a video of a sports day on campus from the 1930s (which doesn’t show any patient faces clearly), displayed at the back of the exhibition).
The final section was based on the idea of everyday life within the asylum and hospital. This, in some ways, was one of the most poignant aspects of the exhibition, reflecting the lives spent, often isolated and removed from the wider world, within the walls of the hospital. Oral histories which told of patients missing the moon landing on television as their routine meant that they had to go to bed – this is a microcosm of the world of routine and structure experienced by many, where they lacked self-determination and autonomy. A section on the development of mental health care policies included at the end of the exhibition, and prepared by the HSE, gave an overview of how new policies from the 1970s aim to change this, with a more patient-centred approach. Some of the objects from this section of the exhibition are listed above, but also included the removable taps from the baths (for patient safety), the keys allowing access to either the male or female wards, but not both (patients were segregated by gender to the latter years of the 20th century), the modified knives and forks used by patients, and also the chalice and paten from the asylum, marked as such, reflecting the role that religion played for patients – there is a Catholic and a Church of Ireland chapel on campus, as well as a graveyard, where some patients who died in the asylum or hospital were buried.
Finally, the last section of the exhibition included a panel on mental health and language, explaining the different terms used throughout the exhibition (including some terms that would be offensive today such as ‘lunatic’ and ‘imbecile’), and a panel on current mental health care directions provided by the HSE. The desk of the Resident Medical Superintendent was included here, and visitors could sit down, and write their own thoughts and reflections on the exhibition, to be hung on a clothes line with wooden pegs behind the desk. Further reading material on the history of the site was provided here, as well as information on mental health care services in the area, and contact numbers for people to use if they were impacted by any of the issues raised by the exhibition. We thought long and hard about including trigger warnings, but in the end, felt that the initial exhibition materials outside the room provided adequate information about its content, without sensationalising the subject matter. A final note – the exhibition was produced in association with the HSE, and therefore does reflect their views on current mental health care policies. We retained as much curatorial and scholarly freedom as possible throughout the presentation of historical material, and based this on best practice developed by curators and scholars on the subject internationally. There is a lot more that I could write about this subject, but I wanted to quickly put together a blog post before I forgot some of the discussions and debates that we had in putting it together. We would have been happier to have the strait jacket at the back of the space, rather than having it front and centre, but this was the only place that this exhibition cabinet could be placed due to the need to use the space for education workshops throughout the run of the exhibition, so some compromises had to be made. The exhibition will run until Feb 2016, and will then be available to tour to other venues.
For more information on the history of mental health in Ireland – Centre for the History of Medicine in Ireland (CHOMI) at UCD, as well as the publication of several recent books and collections of essays on the subject of psychiatric history by scholars such as Catherine Cox, Lindsay Earner-Byrne, Brendan Kelly and Pauline Prior, adding to the work carried out by those such as Mark Finnane on mental illness in Ireland after the Famine, and Joseph Reynolds on Grangegorman asylum.
Julie Laplante’s Healing Roots: Anthropology in Life and Medicine is available for review.
“Umhlonyane, also known as Artemisia afra, is one of the oldest and best-documented indigenous medicines in South Africa. This bush, which grows wild throughout the sub-Saharan region, smells and tastes like “medicine,” thus easily making its way into people’s lives and becoming the choice of everyday healing for Xhosa healer-diviners and Rastafarian herbalists. This “natural” remedy has recently sparked curiosity as scientists search for new molecules against a tuberculosis pandemic while hoping to recognize indigenous medicine. Laplante follows umhlonyane on its trails and trials of becoming a biopharmaceutical — from the “open air” to controlled environments — learning from the plant and from the people who use it with hopes in healing.” http://www.berghahnbooks.com/title.php?rowtag=LaplanteHealing
Those with interest and expertise in this area and who would like to contribute a review on the title to The Reading Room are invited to contact the editor [firstname.lastname@example.org] for further details.
PATIENTS AS PEOPLE – an Exhibition by Emma Barnard in collaboration with consultant surgeons and patients within the ENT department, Whipps Cross University Hospital, Barts Health NHS.
As a fine artist working predominantly within the field of photography, video and sound, I have for the past few years been resident at Whipps Cross University Hospital, Barts Health Trust, collaborating with ENT and more recently Dermatology consultant surgeons investigating what it means to be a patient within the NHS. My focus is on the human condition rather than diagnosis, and on how one might feel as a patient in a clinical, alien environment.
Four years ago, I found myself surrounded and engulfed by the pastel walls and polished floors of the hostile, medical space, as I was guided by the yellow line that led me to my appointment with an ENT consultant. Back then I was just another terrified patient sitting in a visually depleted waiting room, anxiety heightened by the wait itself. Two hours later, I was seen by the consultant when, hanging on to his every word, my auditory senses were heightened over visual ones – thinking just tell me it’s nothing serious…please! He did, I relaxed, and then without too much thought proceeded to blurt out ‘Has an artist ever done any work on patient experience?’ I subsequently wondered why I had voluntarily offered to spend time in a place that most people avoided at all costs.
The process that followed was not easy. In particular, convincing the relevant people at the hospital who believed that having an artist on site involved setting up an easel in a packed to the gills clinic, brandishing a palette and being creative with a paintbrush, took a lot of persuading.
‘Without your medical file you don’t exist within this environment’. First spoken to me by the ENT Head and Neck surgeon Michael Papesch FRACS, these powerful and thoughtful words triggered the name for the project, Patient As Paper. It was not long before the French philosopher Michel Foucault and his book The Birth of The Clinic came into view.
‘When medicine becomes the only social language, the distinction between the doctor and the patient gets more explicit. Their perception of each other becomes hierarchical. In this relationship, the physician is the healthy, wise and authoritative one; whereas, the patient is perceived by the doctor as sick and powerless, even though the doctor may also get sick sometimes. This is what Foucault calls the “medical gaze”.’
Hsuan and Lincoln 2007: 23
Foucault says: ‘Facilitated by the medical technologies that frame and focus the physicians’ optical grasp of the patient, the medical gaze abstracts the suffering person from her sociological context and reframes her as a “case” or a “condition.’
Hsuan and Lincoln 2007: 23
Patient As Paper – CType digital print 2013
As Nancy-Scheper Hughes exemplifies in her article ‘The Mindful Body’, ‘the doctor searches for the “real” cause of the headache, ignoring the social and personal implications of the illnesses with which the patient deals. Thus, through the discourse of medicalization, the sickness emerges as “a form of communication – the language of the organs – through which nature, society and culture speak simultaneously.‘
Scheper-Hughes and Lock 1987: 3
Patients are seen as the voiceless, lost in a system that reduces them to their diagnoses. Having previously been an advocate for various other groups, such as hard to reach NEETS (youth who are not in employment, education or training), Patient As Paper presented an incredible opportunity for me as an artist to once again make the unseen visible through art, by giving patients a voice. I am interested in using art to explore the patient’s perspective on being in hospital, and their emotional response to becoming a product of investigations and treatments. Patients may feel overwhelmed and disorientated by the hospital environment, and may experience loss of control. I am also interested in what doctors experience when looking after patients, particularly when this is emotionally challenging.
After a trail of recommendations, we were fortunate to meet Chris Mc Manus, Professor of Psychology and Medical Education at UCL, who wrote the following:
‘“Patient as Paper” explores photographically the meanings of silent biomedical artifacts such as notes, scans, micrographs and surgeons’ theatre drawings (be they on paper or skin). By inverting a patient and their notes, using superimposition and image-processing, photography forces a critical reflection on being a patient in the foreignness of hospitals, and on the complementarity of patients’ and surgeons’ visions of each other, as objects and people.’
Discussion dictated my next step. Following observation of the patient and surgeon consultation, I presented patients with an opportunity to express their reality, thoughts and feelings through art. In an ENT department, the face, the most potent visual correlate of the person, and personal identity are especially pertinent. The photographic portrait, taken after some discussion with the patient, is printed out and the person is encouraged to note what has impacted them the most about being a ‘patient’. Is there a defining thought, word or image? Proving that human beings can never just be a number, each individual is unique, and no two individuals have ever written or drawn the same content.
Emma Barnard working with patient Lee Anderson 2015
‘As a doctor I wanted to look at patient experience and different ways of understanding what the patients are going through mentally and emotionally and not just physically. Working with Emma allowed us to investigate this through the medium of fine art photography as a radically different way (from a medical perspective) of assessing patient experience.We as doctors are often subject to focusing on the science of medicine, despite our best intentions of treating patients as people. The core of this project is about the need for establishing this human connection as well as understanding what it means to be a patient.
To reflect upon these images invites the doctor and other healthcare professionals to consider what the patient is expressing about their care. Some images are very literal, others less so. It is not so important that the viewer understands exactly what the patient themselves is thinking. The challenge for us as health care providers is to allow ourselves the opportunity to reflect on these images and thereby consider, in a novel, visual and artistic way, how the patient experience can affect us all.’
Mr Michael Papesch FRACS ENT Head and Neck Consultant Surgeon
‘Working alongside Emma has certainly changed my view of the patient consultation for the better. Many of the actions, words and phrases that are commonplace to me seem unusual or even shocking to a non-medically trained professional such as Emma. Emma articulates these thoughts and I gain greater insight into how the patients’ must be feeling. The images created by the patients never fail to amaze me. We all need to look at how we interact with patients during difficult and sometimes upsetting consultations. This kind of work reminds us that we are dealing with real people with real thoughts, fears and emotions and as such it has great value’.
Mr Paul Stimpson FRCS (ORL-HNS) ENT Head and Neck Consultant Surgeon
Now that I had secured this invaluable patient-centred work, it was important to give these people a voice in a more public way. Thus, the Patients As People exhibition was realized. Displaying artwork in a hospital setting comes with incredibly complex rules and regulations. Individual framed portraits on walls can be tricky, something that years of working with galleries and various venues had taught me. I sought inspiration from my biomedical environment and the many tests some of the patients had to endure in their pursuit of ‘getting better’. The idea was a play on the word and function of the X-Ray, a vision of one’s internal world. The exhibition itself could similarly be seen as a reflection of what was taking place within patients’ minds. A free-standing display was designed, containing several pockets where patient portraits could be contained.
Patients As People exhibition – George V Wing, St Barts, NHS Barts Health
Two and a half years ago, the launch at Whipps Cross University Hospital took place. Today, the exhibition is currently installed at its tenth venue, St Peters Hospital, Surrey, having toured the country to include the Department of Health London, Lancaster University and the NHS Leadership Academy in Leeds. One of the hosts Justine Thompson, Patient and Public Participation Lead, Strategic Clinical Network and Senate (East of England) Cambridge comments:
‘From the woman who is ‘boiling over’, to the young man who has totally obliterated his own face, every photograph in this powerful exhibition stops us in our tracks with its raw communication of human emotion.
Some of the pictures show outward serenity – but the self-authored graffiti often tells another story. These photographs are a graphic reminder that every person’s health story is as unique and individual as they are and that every encounter with a health care professional is likely to be an unwelcome voyage into the unknown. This is essential viewing to reconnect us all to the core of our own humanity.’
After a successful launch at St Peters Hospital the exhibition will remain there until the move to Ashford Hospital in September, launch date 19th October. If you would like to attend the launch, please contact: Giselle Rothwell on email@example.com
This year’s summer release by Pixar Animation Studios, Inside Out, follows the inner workings of the mind of Riley, an 11-year-old girl from Minnesota, as her life is suddenly turned upside down when her family moves to San Francisco. This film has already received great acclaim at Cannes Film Festival 2015 for its heartfelt relatable story, imaginative storytelling, beautiful animation and a delightful musical score. However the film’s complex subtexts are really what makes it remarkable, as they are richly informed by a wealth of psychological theories.