You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our site.

Uncategorized

Exhibition Review: Rest & Its Discontents

6 Oct, 16 | by cquigley

leaflet-lowres_page_1

 

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.

antonia-barnett-mcintosh-breath-still-from-film-2015-image-courtesy-of-ed-prosser-2

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

nina-garthwaite-default-mode-radio-network-image-courtesy-ed-prosser

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.

THIS IS A VOICE at Wellcome Collection reviewed

16 Jun, 16 | by cquigley

L0081645 'His Masters Voice'. Painting by Franci

‘His Masters Voice’. Painting by Francis Barraud, 1919. Credit:Courtesy of the EMI Group Archive Trust

 

THIS IS A VOICE

Wellcome Collection, 14 April – 31 July 2016

Reviewed by Steven Kenny

 

Approaching the exhibition entrance of THIS IS A VOICE at the Wellcome Collection, it is easy to think the voice is treated as criminal, being contained, controlled and its behaviour segregated from the world outside. Initial thoughts would suggest that it is being acoustically surveyed; with the steady opening and closing of the exhibition door, sound rushes to the exit. Yet its attempts are ultimately futile, the room has been sound proofed, noise restricted from accessing the outside world. On entering the space, grey triangular padded shapes line the walls, detail reminiscent of a kitsch science fiction film from the 1980s. The exposed patterned structures, evocative of the décor of Ridley Scott’s periled spaceship in Alien, enclose you in a warm, familiar hug of nostalgia. Sensing that this space is one visually tread before, it is easy to forget the prestigious institutional context of the exhibition. THIS IS A VOICE, a show investigating the potential of the voice in all its forms, techniques, objects and cultural baggage, is particularly engaging for it knowingly understands such a topic cannot be wholly represented (due to various cultural and language complexities). Yet it does a heartfelt job in attempting to at least understand how the voice as a product, both commercially and non-commercially viable, can be exhibited. Curatorial flourishes can be found everywhere, from the nooks and crannies of seated listening stations to the maze-like paths that allow a gentle flow of avid listeners from one space to the next. From attending numerous shows at the Wellcome Collection I must comment that THIS IS A VOICE is one of the most stimulating and generally refreshing exhibitions to be held in its space.

It would seem that an inner versus outer exploration of the body and the voice is focused on throughout. One telling example of this is immediately apparent in the work Circular Song, 1974 by Joan La Barbara. A half dome like structure hangs from the ceiling, the speaker’s hollow interior pervading the space below with sound. The experience of entering this wall of sound is generally unnerving, a constant and increasingly uncomfortable echo of inhaling and exhaling performed by the artist, breathes all over you. It is nightmarish, a deathly noise that would seem totally apt in the exhaling howls of a victim being chased by a stalker in a nerve inducing slasher film. Sound in this manner is represented as an abject substance, an uncanny emotional pulling of the visitors’ own sentiments to the body and the amplified vocalisation of a body process that now seems one of disgust. Yet this is in direct contrast to Marcus Coates multi-screen film installation Dawn Chorus, 2007, which is silly, funny and surprisingly touching. This room is filled with the fluttering sounds of birdsong, a number of monitors positioned at varying heights depicting subjects in everyday locations comically singing along to each sound created. Experiencing this work initially seemed deceptive­­–I could not understand how both image and sound aligned so perfectly, as though the birdsong was actually being produced by a human lip whistle. Subjects pursed their lips and jotted their heads up and down in perfect alignment. The façade is lifted on reading the work’s description: ‘After recording the dawn chorus with multiple microphones, the individual birdsongs were slowed down to last approximately 16 times as long, which enabled the participants to imitate them, while being filmed’. Yet not knowing these details did not matter as my imagination roamed freely around the space. I observed each subject as one would watch a bird in the wild, mesmerised by its harmonic whistle and merry bouncing of its head.

Words

THIS IS A VOICE at Wellcome Collection, 2016. Credit:Photography by Michael Bowles

Dotted around the exhibition are various textual works, the written word laid bare. Erik Bunger’s wall text I Hearby Command You to Give Voice to These Letters Silently or Out Loud, 2011 was surprising in that it forced an involuntary restriction of my own voice from permeating the gallery. I so badly wanted to shout out loud the words I was reading yet thought better than to add to the already noisy space. Yet on second thoughts maybe that would have made for some interesting spectator reactions. Bunger’s playful register, was paralleled by Mikhail Karikis’s digital prints (photographs by Thierry Bal) Sculpting Voice, 2010, where the artist was photographically recorded pulling various facial gestures. Three prints line the wall in sequence, each exhibiting Karikis’s comically retuned face, made even more comical by the muting of what would probably have been quite a painful or otherwise loud projection of sound.

L0081817 THIS IS A VOICE at Wellcome Collection, p

THIS IS A VOICE at Wellcome Collection. Credit:Photography by Michael Bowles

 

The exhibition saved its loudest and most intriguing work for last. Entering the final room of the show, you would think that you might have woken in a Lynchian nightmare. Best described as an interactive, participatory constructed, sound installation, a lone and somewhat foredooming sound booth, tempts the spectator.

L0081800 Matthew Herbert, Chorus, 2016

Matthew Herbert, Chorus, 2016. Credit:Photography by Michael Bowles

The aptly titled Chorus, 2016 is by the British electronic musician Matthew Herbert, whose work ‘asks visitors to sing a single note within a professional recording booth following a set of instructions. The visitor’s voices are then automatically added to a chorus of voices, including performers and staff from the Royal Opera House, forming an ever-expanding sound installation that plays in the exhibition space and at the Royal Opera House’s Stage Door in Covent Garden’. I entered the space to sing the requested solitary note. Escaping my throat, my voice joined the squeaks, squeals, and sometimes correctly pitched notes above. Noise reverberated violently throughout the room, puncturing the space like a diminished fifth encroaching a melodic passage. The voice in this exhibition is presented as an ever-changing entity, one that is able to attack, calm and arrest.

 

Articles from Medical Humanities on the human voice:

Kelly BD. Searching for the patient’s voice in the Irish asylums. Med Humanit 2016;42:87-91.

Demjén Z and Semino E. Henry’s voices: the representation of auditory verbal hallucinations in an autobiographical narrative. Med Humanities 2015;41:1 5762.

Puustinen R. Voices to be heard—the many positions of a physician in Anton Chekhov’s short story, A Case History. Med Humanities 2000;26:1 3742.

 

First impressions only happen once

7 Jun, 16 | by cquigley

 

Fergus Shanahan

 

Eyes smiling, face beaming, the porter rose from his stool to greet arrivals at the cancer centre, each nervously hesitant, staying close to a supporting loved one. With the confidence of a man who enjoyed being good at his job, he paused for those needing directions, reassured us that we were in the right place for our appointment, and then boomed: “Welcome everyone, and good luck to you all today.”

Good start. After that, we didn’t mind inconveniences like waiting for the single working elevator and felt better about whatever unknowns were ahead. The moment was still fresh when we got to the sixth floor. There, we faced a receptionist unable to switch her gaze from a computer to address us. Detached with jaded eyes fixed elsewhere, her outstretched arm dispatched us to an adjacent touch screen to register. We obeyed but the system insisted on a five-digit address code. Bad enough to be labelled ‘international’ as code for not having acceptable insurance, but not having a zip code was a new stigma. Before we could explain, Miss No-Eye-Contact was on the phone staring at some distant point behind us, then back to her screen with a facial expression that said: “Can’t you see! I’m busy.” Bristling a little, I blurted out my son’s details to demand attention. Without the slightest shift in posture, she confirmed our existence in the system with a few flicks of her keyboard. Progress. Then she left us with the unsettling comment: “Hmm, that’s interesting…take a seat and wait while I check with Accounts.” This is not what patients want to hear as they contemplate the prospect of major surgery. No one wants to be that kind of interesting.

Joe shot a warning glance at me “Dad…don’t be rude with this lady. Don’t lose it!”

Lose it! After 8 months of continual worry and stress trying to steer my son through the complexities and decision-making of a young man’s cancer treatment, I was determined not to ‘lose it’. We were overseas in a different healthcare system for a high stakes operation. They were now in charge and I would just have to play it their way. After all, I wasn’t the patient. I was supposed to be the support. So I stayed quiet. Then, the silence was broken, delightfully so, it seemed to me, when an old woman behind us flatly refused to have anything to do with self-registration. Dismissing the technology with an impatient wave of her hand, she snapped at no one in particular in a brash accent: “I’m not gonna do it, I can’t be bothered with that.”

Miss No-Eye-Contact receptionist had met her match.

While waiting, I imagined myself telling anyone seeking my opinion that professional staff within medical offices and hospitals should heed the little things that comfort patients. I would tell them that little things are important. Staff should know that routine for them is crisis for the patient. I would remind them that there is only one opportunity to make a first impression. First impressions are made up of little things. Little things can make a big impression. If the front office experience is poor, anxiety increases and confidence in the rest of the enterprise becomes more doubtful. In other words, if the dentist’s receptionist is a barracuda, don’t expect much pain relief when you get to the back office.

Then, we heard our name called out and we were on our way into the back office.

The interview with the surgeon was probably over within minutes but it seemed much longer. He began with a firm handshake. Then, sitting beside us not across a table, he spoke confidently in clear, crisp, explanatory sentences. These, he must have repeated on hundreds of previous occasions but it didn’t seem that way. He anticipated our questions and acknowledged our sense of urgency.

In the end, the professionalism of the porter that morning and his memorable welcome was the bellwether for what followed. The surgeon’s skill and experienced team determined what was to be a favourable outcome. But something else made a difference and a lasting impression. To borrow from the poet Maya Angelou:  “…people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

 

Fergus Shanahan, MD, DSc

Professor and Chair,

Department of Medicine,

Director, APC Microbiome Institute

University College Cork,

National University of Ireland

Tel +353-(0)21-4901226  also cell phone 086 280 4881

FAX +353-(0)21-4345300

F.Shanahan@ucc.ie

 

 

Medicine Unboxed: Students 2016

17 May, 16 | by cquigley

 

Deadline: Midnight Sunday 3 July 2016


Medicine Unboxed 2016 is on the theme of Wonder and takes place in Cheltenham on 19-20 November 2016.


Medicine Unboxed: Students brings together students of the arts, health and medicine to present their work and thinking at Medicine Unboxed.

Applications are invited for a 10-minute presentation at Medicine Unboxed: Students 2016.

Applications are open to undergraduate or postgraduate students from all backgrounds, including art, drama, music, medicine, literary studies, philosophy and other health-related subjects. Previous presentations have included conversations and debate, performances, storytelling, dance and comedy, workshops and film.

The application should be around 500 words long and include: i) Title, ii) Format, iii) Presenters names, iv) Contact email & phone number, v) Educational institution and subject being studied.

The advisory group will review all applications and will let you know if you have been selected by 25 July 2016.

From the applications received five people will be selected who, in addition to presenting at Medicine Unboxed: Students, will work with Medicine Unboxed as interns for two days helping to set up and support the delivery of Medicine Unboxed: Wonder. Interns are provided with accommodation and travel expenses and are invited to a creative writing workshop with Professor Tiffany Atkinson.


Applications
sam@medicineunboxed.org

Enquiries
lucy@medicineunboxed.org
sarah@medicineunboxed.org

Follow
@MUstudents

Explore https://www.facebook.com/groups/175072369272118/?fref=ts

http://mustudents.wordpress.com 

http://medicineunboxed.org

Art, Life and Illness

16 May, 16 | by cquigley

 

David Marron: Encounters

 

Columba Quigley

GV Art London, David Marron, Geras 3, 2013, charcoal and acrylic on board, 60 x 42cm

David Marron, Geras 3, 2013. Image courtesy of the artist and GV Art, London

I was fortunate to catch this exhibition, held over the May Bank Holiday weekend at Lumen Studios, The Crypt, St John on Bethnal Green.

David Marron is both an artist and a paramedic.

The exhibition consisted of 12 pieces, charcoal, acrylic and collage on paper, standing on and supported by crutches.

These are multi-layered and complex works. As you stand before each, more unfolds with every moment of prolonged gaze.

Marron’s probing work is steeped in the essence of humanness, in the complexity, vulnerability and fragility of life itself and of those who inhabit it.

The artist’s experience as a paramedic affords him a unique viewpoint – that liminal space that he witnesses between wellness and illness, between living and dying, where life is suspended and where outcome is often unknown.

Following the exhibition, I had the opportunity to chat to Marron about his work. Initially trained in fine art, his working life brought him to the world of hospitals and the unwell. This witnessing, of the transformations and experiences of illness, changed the nature of Marron’s art. Previously, he reflects, his work had been more self-obsessed. Becoming part of the world of illness transported him away from a more personal interior world and towards a consideration of that of others.

In his work as a paramedic, Marron might only spend very short periods of time with patients on their journey to hospital. The encounters that moved him emotionally resulted in a transmutation of the feelings such interactions generated into the drawings on display. Yet each piece does not represent a single encounter or a specific individual, but is rather a conflation of a number of similar emotional experiences.

The piece Run Away Robin, for example, is not a direct portrait but was informed by a number of encounters with patients suffering from dementia. The piece represents a piecing together of the emotional fragments that Marron took away from such interactions: the nobility and stoicism that accompany the manner in which the elderly deal with memory loss; the masks they create, often using obstinacy and non compliance to hide their fears; and the fragmentation of self that accompanies the condition, here seen by the snippets of repeated words that hold meaning to the utterer even if uninterpretable by us.

 

GV Art London, David Marron, Run away Robin, 2015, charcoal and acrylic on paper, 84 x 59cm

David Marron, Run away Robin, 2015. Image courtesy of the artist and GV Art, London

A Tooth for a Tooth reminded me of Munch’s The Scream – that primordial sense of pain and anguish, seemingly uncommunicable in its silence. Any yet not, as we confront the distress so vividly here on canvas. The violence of this lived experience is hard to bear witness to, and yet there is so much tenderness in the lines that Marron draws to communicate this emotion that we rest our gaze and stay with the sufferer.

GV Art London, David Marron, A Tooth for a Tooth, 2014-15, Charcoal, acrylic and collage on paper, 84 x 59cm

David Marron, A Tooth for a Tooth, 2014-15. Image courtesy of the artist and GV Art, London

Marron is unafraid to share the challenges and pathos of the lived experience, witnessing it acutely as a paramedic. Yet his work also celebrates life throughout, most notably in Fentanyl Dreams, which vividly communicates the force of the newly born.

GV Art London, David Marron, Fentanyl Dreams, 2012-14, Charcoal, acrylic and collage on paper, 84 x 59cm

David Marron, Fentanyl Dreams, 2012-14. Image courtesy of the artist and GV Art, London

Marron is also a sculptor. However, for the works and themes presented in Encounters, drawing for the artist facilitated a unique truth and directness. He works quickly. Once inspired, the initial charcoal drawing is ready within 3-4 hours. Structures are built around this draft, followed by revisions. The sense of speed involved in their creation imbues the pieces with much energy and a less calculated finished product.

The exhibition also includes a video, En Route, which takes you on a journey through London, a horizontal view from within an ambulance. Buildings and sky whizz by, the world outside continuing and ignorant of what is happening inside the vehicle and within the world of the ill. The poem Ambulances by Philip Larkin came to mind:

‘Closed like confessionals, they thread

Loud noons of cities, giving back

None of the glances they absorb.

Light glossy grey, arms on a plaque,

They come to rest at any kerb:

All streets in time are visited.’

 

The poem ends:

‘Unreachable inside a room

The traffic parts to let go by

Brings closer what is left to come,

And dulls to distance all we are.’

from Ambulances, by Philip Larkin.

 

Our fragility, vulnerability, finiteness – further exemplified by the works being mounted on crutches – are clearly evidenced in Marron’s work, and are so beautifully communicated with much tenderness and compassion.

 

http://www.davidmarron.com

GV Art London, curators, producers & artist agent, represents David Marron amongst others.

 

A little Danish mermaid and other stories (of rare diseases)

7 May, 16 | by cquigley

 

 

A reflection on Sofie Layton’s Under the Microscope by Giovanni Biglino (Bristol Heart Institute, Bristol, UK)

 

The voice of a little girl and the sunlight filtering through layers of green batik – a series of coral-like structures representing real heart models displayed under bell jars – anatomical drawings – and the story of a boy’s heart transplant…

With her ambitious piece Under the Microscope, artist Sofie Layton has created two powerful installations, both rich in imagery and charged with people’s voices, during a yearlong residency at Great Ormond Street Hospital for Children in London.

The artwork aims to explore how patients and families process medical information, particularly in the context of rare diseases. Layton’s delicate rendition manages to achieve the aim and to go beyond, in a moving exploration that encapsulates the technicalities of scientific research around rare diseases as well as the strength of young people that are born with these conditions.

The installations focus on two different medical scenarios. In isolation is centered on severe combined immunodeficiency (SCID), whilst Making the invisible visible explores congenital heart disease.

The first recreates an isolation tent, made out of fluttering green/yellow batiks on which the artist has printed golden and silver viruses. Inside the tent, there is a bed, and a touching soundscape in which three voices alternate: a young Danish girl that candidly speaks about her growing up with SCID and the treatment she has received in the hospital; an immunology specialist discussing the condition; and the artist herself reading excerpts of H. C. Andersen’s Little Mermaid. The tent’s fabric suddenly transforms into a sea. The artist reads a bedtime story to the girl and tells us about transformation after treatment.

FIGURE 1

Figure 1: Visitors sitting on the bed inside the isolation tent.

The second is a powerful presentation of different facets of congenital heart disease – its shape, its frailty, its treatment, its narrative. The piece mixes 3D printed models, set on a steel table, with large silk panels on which the journey of a patient is symbolized in its phases, from anatomy to medication to new technologies that can help diagnosis and therapy.

The installations show stylistic links with previous work by Sofie Layton, particularly her piece Bedside manners (Evelina Children Hospital, 2014), which also included a site-specific installation with a bed and a soundscape, her intent clearly that of making the installation as immersive an experience as possible for the viewer. In the current piece, for instance, entering the isolation tent involves wearing latex gloves, a mask and a plastic apron, all of which immediately heighten the awareness of the viewer around the medical issue.

The artist has undoubtedly explored, appropriated and re-elaborated medical language in her process. Viruses’ names are scribbled in a doctor’s hurried handwriting on the fabric of the isolation tent, and language is central to the cardiac-themed piece, with five large silk panels listing congenital lesions, medications, technologies, but also keywords emerging from patients’ stories, all printed in the background of large anatomical drawings that, in turn, dialogue with the 3D anatomical models. Rather than a repetition of technical jargon, this creates an emphasis on the meaning and the power of these words – life-threatening conditions and life-saving medications, there shining on the precious silk backgrounds – technical/anatomical terms mixing with heartfelt imagery from patients’ narratives. Whilst the non-expert viewer would question the meaning of some of these words, the expert viewer would pause and wonder what stories are hidden behind and in between them. The language element is echoed in the soundscape, which opens with a young boy struggling to pronounce “ventricular assist device” (the boy, in real life, has been on mechanical heart support awaiting heart transplant).

FIGURE 2

Figure 2: Language is recurrent throughout the piece, such a name of viruses (left) and of cardiac conditions (bottom right), but also poignant quotations from parents and patients the artist has met during her residency (top right).

Another key element to the artistic research is an interesting exploration (microscopic and macroscopic) of shapes. On the one hand, viruses and cell structures are magnified. On the other hand, the anatomy of the heart and its variations in the presence of congenital lesions are beautifully presented with the use of 2D and 3D representations. The artist looks at the topography of the heart in a separate panel (exhibited in the entrance to Great Ormond Street Hospital), a rather abstract shape of intricate lines, a map, a blueprint of the engine room, but also suggesting other paths and other stories that have crossed. And 2D representations of the anatomy are complemented by the use of 3D models, manufactured from patients’ imaging data. Here the artist allows herself the license of going beyond the engineering aspect of 3D modeling, and includes in the cardiac landscape a small heart cast in bronze, which is suspended inside its bell jar – an evocative and immediate reminder of the preciousness of the organ.

FIGURE 3

Figure 3: A series of anatomical patient-specific models is presented under bell jars, including elements such as the suspended bronze heart (scaled from a medical model).

Layton’s work is exquisite in its layering. There is something rich and soft in the choice of silks. Something organic and fragile about the white 3D models. And a gentle lightness about the batiks of the isolation tent. But Layton’s work is above all exemplary in that is shows how art can be a powerful vehicle for sensitive stories charged with medical significance. The work is not sentimental or condescending and, albeit visually stunning, it does not embellish the pain of the stories it embodies. And equally it is not provocative, it does not intend to make the viewer uncomfortable by facing the complexity of rare diseases and the consequences on people’s lives. The work manages to strike a balance and what emerges, in the end, is a great respect for the humanity of the stories. The stories of patients, of course, but also the stories of their families, of physicians and their medical endeavors, and of researchers and scientists who look under the microscope in their daily practice.

FIGURE 4

Figure 4: Elements of the visual landscape of congenital heart disease. Left: one of five panels representing the journey of a patient, in this case medications, including a representation of a patient’s heart following multiple repairs of congenital lesions. Centre: a piece bringing together the voices of several patients and carers, every metal plate having been embossed by a different person with whom the artist developed a conversation during her residency. Right: representation of the topography of the heart.

The recognized importance of the narrative of illness experiences[1] is clearly central to the artist’s work, but so is the idea of the dialogue. The dialogue that she has had, through her participatory practice, with patients and families during workshops and on the wards of the hospital, over a period of several months. The dialogue that she has also fostered with researchers and clinicians, looking for that language she set out to explore in the first place, entering the lab herself and beginning to look under the microscope. This dialogue is completed with the inclusion of the viewer in the conversation, by means of the immersive nature of the pieces. The installations (both are site-specific for spaces in Great Ormond Street Hospital and the adjacent Institute of Child Health) rely on an array of media, including fabrics, embossed metals, the sculptural 3D models, but also soundscapes. The latter are absolutely integral to the installations and serve to further engage the viewer. Dr Jo Wray, health psychologist and senior research fellow at Great Ormond Street, remarked on the quality of the soundscapes, and how the looping of the recording is able to render the time element of living with rare diseases as something that represents itself day after day after day (for the patient but also for the carer). The viewer is thus included in the conversation and is also invited to look under the microscope. To look at the complexity of this world, crystalized in the technical jargon and juxtaposition of anatomical models – but also at the humanity that emerges so powerfully through the voices and through poetic quotations that the artist has blended in the pieces. “Now don’t suppose that there are only bare white sands at the bottom of the sea. No indeed! The most marvelous trees and flowers grow down there…” (H. C. Andersen)

FIGURE 5

Figure 5: Details of the isolation tent.

 

Note from the author: congenital heart disease is not, strictly speaking, a rare disease; however, some of the lesions depicted in Layton’s work represent cases of complex congenital heart disease and can be considered rare/unique in their anatomical arrangement.

Sofie Layton: http://www.sofielayton.co.uk

Go Create! Great Ormond Street Hospital arts programme: http://www.gosh.nhs.uk/about-us/our-priorities/go-create-arts-programme

Images courtesy of Stephen King. Do not reproduce without permission.

 

[1] Garden R. Who speaks for whom? Health humanities and the ethics of representation. Med Humanit 2015; 41:77-80

Difficult Histories by Niamh NicGabhann

28 Aug, 15 | by BMJ

image

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.

image

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.

image

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.

image

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.

image

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.

image

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.

image

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).

image

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.

image

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).

image

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.

image

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.

Correspondence:

Dr. Niamh NicGhabhann,University of Limerick
niamh.nicghabhann@ul.ie

image

Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.

 

From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.

 

Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’

 

Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.

 

However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).

 

During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.

 

There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.

 

This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.

 

Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.

Reference:

  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information: http://markmaking.arts.ac.uk

Correspondence:

Dr Hannah Zeilig

University of the Arts, London

h.zeilig@fashion.arts.ac.uk

 

 

 

The Forgiveness Project: Stories for a Vengeful Age

26 Apr, 15 | by Deborah Bowman

Images of Eva Kor embracing former SS guard, Oskar Groening, at his trial in Lueneberg this week have been shared on social media and in newspapers worldwide. These images, and the responses to them, reveal much about the complex, surprising, inspiring and challenging, sometimes even threatening, nature of forgiveness. Our relationship with forgiveness, collective and individual, is always nuanced and often ambivalent. It is a slippery, shape-shifting concept that rarely exists without an undercurrent of emotion. Forgiveness can be experienced as both restorative and undermining. It may be perceived as noble and a betrayal. We may aspire to it even as we fear it. Forgiveness is a force that may be resisted or harnessed or, perhaps more often than we acknowledge, both.

 

Few have thought more about forgiveness than Maina Cantacuzino. Ten years ago she founded The Forgiveness Project. Last year, saw a series of outstanding events to celebrate a decade of its work culminating in the publication of a book – The Forgiveness Project: Stories for a Vengeful Age. It is a remarkable text that manages in a slim volume to capture the significance and unique approach of The Forgiveness Project and, in doing so, captures why its work matters more than ever.

 

Central to the book and to the work of The Forgiveness Project are stories. Those stories offer an unmediated insight into this demanding, elusive, inspiring and troubling thing we call ‘forgiveness’. It provides space, without judgement or commentary, for people to reflect on and to share what forgiveness means for them.

 

It is these narratives that form the basis of the book, although Marina Cantacuzino’s introductory essay – “As Mysterious as Love” – is an outstandingly thoughtful, and thought-provoking, exploration of forgiveness and her own personal and professional relationship with it. The book also carries two rich and insightful forewords from Desmond Tutu and Alexander McCall Smith. Yet, it is the forty individual stories that follow the introduction and forewords that form the essence of this unique work.

 

Some of those who come to The Forgiveness Project are well-known people whose capacity for compassion and empathy towards those who have caused devastation has prompted fascinated media attention across the world. Others are less familiar names but their stories are equally urgent and compelling. There is neither formula nor any sentimentality to be found. Anyone seeking sentimental salve will be disappointed. Nor do tropes of heroism or survival occur often. What is offered instead is much harder and ultimately more rewarding. These are accounts that are authentic, sometimes painful, often surprising and always affecting.

 

It is not merely the content of these stories that is noteworthy. The form reflects the discomforting and urgent nature of the tales told. All the individual contributions are short, few extend beyond five pages and the language is direct, plain and unflinching. There is force in the form. It propels the narrative, unadorned and untamed, searing each account in our memories and unsettling our own perceptions of forgiveness. The stories are presented with little in the way of preamble and often begin at points of loss, crisis and despair. The ways in which each of these accounts breaches the reader’s consciousness reflects the nature of the experiences described. These stories, like the events they relate, arrive unbidden and unexpectedly, without warning or invitation. They interrupt and disrupt. The language is spare, sometimes even brutal, and simple belying their daunting legacies. These are collisions with strangers that can change the direction of a life, or at the least, the beliefs one holds about a life.

 

These stories reveal that the force of forgiveness is often experienced viscerally. Its charge is both negative and positive. Within the book, there are no homilies or sermons about its normative value or otherwise. It is simply there: unfiltered and demanding our attention. Whether it is resisted, embraced, explored or ignored, its force cannot be avoided. A number of contributors note that it may be easier to define forgiveness by what it is not and, in so doing, they challenge much of the received wisdom about what constitutes forgiveness and why it matters. Others are less interested in definitions and the boundaries of the concept. All those who have contributed to the book attend to meaning in all its infinite variety. These are fluid explorations for alongside the meditations on forgiveness, are reflections on what it means to have hope, to be loyal, to restore dignity and ultimately to be human. That these ideas emerge from the rubble of lives shattered by loss, cruelty and destruction is not only intensely moving, but serves as testament to Marina Cantacuzino’s transformative work both in creating this book and leading The Forgiveness Project.

Prof. Deborah Bowman

Editor, Medical Humanities

St George’s, University of London

Email: dbowman@sgul.ac.uk

Twitter: @deborahbowman

 

Art in Arthritis by Nancy Merridew

22 Mar, 15 | by BMJ

 

 

I called Marco from the waiting room.

 

Everyone looked waxen under the fluorescent lights of Rheumatology Clinic. His olive skin looked grey. He rose like a grapevine on the trellis – thickset but gnarled through the seasons.

 

Marco helped his wife with her handbag and they walked together. Her gait was robust; his was antalgic and unhurried, though slower than he’d have liked.

 

In the consulting room we shared our introductions. I explained that I was aware of his medical history and asked “what are your biggest joint troubles today?”

 

Marco’s molten voice was rounded with a beautiful Italian accent and 80 years of life.

 

Apologising in fluent English Marco said that he didn’t speak English well and that it’s important to “talk the talk” of the doctors.

 

He looked down, reached into a shopping bag, and handed me three sheets of drawings.

 

I was stunned by beauty, utility, and clarity.

 

Brown ink outlined each picture, backfilled with camel watercolour. One image revealed the face of a younger man and the muscular shoulders of youth – his mind’s eye self-portrait.

 

Marco nodded to confirm that he had drawn them all.

 

Each drawing was anatomically correct and swelled from the parchment like parts of an amputee ghost. In some, his bones were bare. In others Marco had blended superficial features of skin with deeper structures of the appendicular skeleton.

 

A left hand floated on one page, like Adam’s in his Creation on the Sistine Chapel ceiling. Words – “Pain here” and “Here too” – were anchored by lines drawn to the hand, portraying metacarpophalangeal and proximal interphalangeal pain.

 

Figure.1_Hand.Shoulder_BMJ

Figure 1. Annotated drawings of right shoulder, face, and left hand:

  • “Pain here” [SHOULDER]
  • “Pain here” [5th METACARPOPHALANGEAL JOINT]
  • “Here too” [2nd METACARPOPHALANGEAL JOINT]
  • “Pain here” [FINGER]

 

Six weeks earlier a rheumatologist had diagnosed Marco with recurrence of polymyalgia rheumatica, with shoulder and small joint features, and with a possible component of new onset rheumatoid arthritis. Recurrent carpal tunnel syndrome was diagnosed in his right hand.

 

On the other pages Marco had drawn his hips, knees, and feet, and annotated their aches with cursive writing.

 

These bones it seems that they are coming apart. When I walk for about ¾ of an hour then it start to give pain. Swells up and gets quite hot. The knee.

 

Figure.2_Knee.Foot_BMJ

Figure 2. Annotated drawings of foot and knee:

  • “Pain here especially at night.” [KNEE]
  • “These bones it seems that they are comming (sic) apart. When I walk for about ¾ of an hour then it start (sic) to give pain. Swells up and gets quite hot. The knee.” [KNEE; TIBIOFIBULAR JOINT]
  • “Pain here last for days on both feet. Not all the time” [TALUS]

 

Marco was seen in the hospital’s Orthopaedic Clinic for severe osteoarthritis of his knees.

 

A carpenter, who still bent those knees to work, Marco explained that he once did a Fine Arts degree to support his business. Beyond that expertise, his careful handling of the autographed pictures revealed an artist.

 

The edge of one page cut through the word “foot” at “foo” which perhaps reflected Marco’s life.

 

Born during the Great Depression he was of the frugal generation – practical, resourceful, industrious. I wondered if Marco had ever rationed paper as a luxury, each sheet precious and saved for handsome cabinet designs.

 

Perhaps as an artist, unwilling to share flaws, he had cropped a larger page of sketches.

 

Figure.3_Hip.Foot_BMJ

Figure 3. Annotated drawings of right foot, pelvis and right lower limb:

  • “Both feet hurt at times” [FOOT]
  • “Pain in here sometimes not all the time” [HIP JOINTS BILATERALLY]
  • “Right leg. Pain here” [FEMORAL HEAD, TIBIAL PLATEAU]

 

I was enthralled.

 

Marco’s eyes danced like bubbles from the surface of Prosecco – the muted pleasure of artistic pride.

 

Already he had offered his pictures to me three times as a gift.

 

Yet I had declined as it seemed too generous. I thanked Marco and encouraged him to keep bringing the drawings to appointments given their clinical value.

 

I completed the history.

 

Marco’s main concerns were steroid-related weight gain, although his arthralgia had improved.

 

As he talked I noticed subdued hand gestures. Given his Italian heritage, perhaps Marco suffered a cultural version of locked-in syndrome from the pain that restricted his upper limbs.

 

After completing the physical examination, I liaised with my registrar about Marco’s clinical plan. In a makeshift gallery behind the consulting suites I showed his artworks to the rheumatologists.

 

They advised that I could keep the pictures, and to take photocopies for the medical record. I made an extra copy either for me or for his art portfolio.

 

I returned to the clinic room. Marco’s wife, who had been silent, was keen to hear the consultants’ opinions of his drawings.

 

She beamed on learning that they were unanimously said to be “the most beautiful ever seen in clinic”, and particularly enjoyed by the Head Professor of Rheumatology.

 

Again Marco offered his pictures and this time I accepted with delight.

 

Smiling, he received his own copies as I explained his treatment changes and follow-up plan. We shook hands. Those aching hands created beauty and conveyed exceptional insights.

 

I watched as he left with his wife and wondered about their lives, leaving Italy to bring their charisma to Melbourne.

 

Two days later I framed the drawings – an exquisite medical document and gift. They hang in my home and evoke Marco’s grace, eloquence, and vitality.

 

* * *

 

Acknowledgements and Postscript

 

Marco, a pseudonym, has consented to the release of his artworks for the purposes of this article. See Figures 1, 2, and 3. Sincere thanks to the patient for his generosity and insights.

 

Thanks to Dr Thomas Lawson Haskell BMBS for his excellent photography of the drawings.

 

Correspondence: Dr Nancy Louisa Gwen Merridew BA BSc MBBS DTMH

Basic Physician Trainee, Launceston General Hospital

PO Box 1328, Launceston, Tasmania, Australia 7250

Nancy.Merridew@gmail.com

Medical humanities blog homepage

Medical Humanities

An international peer review journal for health professionals and researchers in medical humanities. Visit site



Creative Comms logo

Latest from Medical Humanities

Latest from Medical Humanities