Abstracts

I take this line from Emily Dickinson, 'Pain has an element of blank', as a starting point from which to discuss the relationship between articulation, pain and absence: 'blank' symbolising the inability to communicate or articulate pain.

When there are moments of space, or gaps, even hesitations, in written accounts of pain, they are so often thought of as something missing, repressed or unable to be expressed. Familiar in many discussions on writing pain, illness and trauma, is the assumption of the incommunicable, or the unspeakable - the lack or absence of what can be conveyed. Such gaps are thought of as symptomatic of the painful or traumatic experiences.

However, it is my contention that these textual spaces are far more complex than this: such gaps can reveal something about the communication of both nuances and crises of representation. Essentially these gaps in representation are features of representation. Writing can be symptomatic of more than purely pain or trauma.

As Joanna Bourke has successfully addressed in The Story of Pain, countering in part Elaine Scarry's generalisation of the incommunicable nature of pain in The Body of Pain, pain has much to tell us. Or rather, the 'person[s]-in-pain' have an agency and exclusive perspective which centralises the pervasiveness of not only physical or psychological, but also emotional pain.

I focus in this paper on a selection of first-hand medical accounts of the First World War, including Mary Borden's The Forbidden Zone, Enid Bagnold's A Diary Without Dates, Vera Brittain's Testament of Youth, and Georges Duhamel's The New Book of Martyrs, among others.

These examples include diaries and memoirs, but specifically include prefaces or in-text references to their struggle not only to write, but also find an appropriate narrative form for their specific articulation. In fact this often comes down to a refusal of form altogether. For example, Mary Borden justifies her use of 'fragments', which are 'of great confusion', because 'any attempt to reduce them to order would require artifice on my part and would falsify them'.

What is particularly unique in these texts are the tensions between experiencing pain, witnessing pain, and writing pain. These caregivers-turned-writers attempt to communicate the experiential dimensions of medical care in war; 'bearing witness' to the suffering of others, whilst also identifying their own personal pain and struggles to navigate the physical and emotional spaces of military-medicine.

The voices of these 'wounded healers' offer unique perspectives that are inherently valuable to wider discourses on the nature of experiencing and articulating pain, and offer insights into how these contribute to complexities within caregiving.

Prof Joanna Bourke

'Me' and 'My Pain': A History of the Language of Suffering

How have sufferers of chronic pain attempted to 'make sense' of their affliction? In this talk, I will explore the changing ways that people-in-pain and their medical caregivers (between the nineteenth century and the present) communicated their suffering to others. The dramatically different metaphors they use reveal the influence of culture on the body. The creative ways in which people-in-pain frame their experiences not only provide important clues to the unspoken meanings that they attach to their suffering, but also provide hints for witnesses about how they can reach out to help.

Prof Rita Charon

How to Listen to the Talk of Pain

Complex events occur in the high-stakes conversations between relative strangers that are told and heard in the clinic-doctors' offices, emergency rooms, hospital wards, & house calls. The patient has to find the language to first represent and then convey bodily sensations and the meanings tentatively attached to them. Slippery and often unavailable, the expression of this language of pain, of suffering, of doubt, of fear is often, perhaps typically, unequal to its task. Concurrently, the reception by the listener of what is conveyed by the patient is similarly unequal to its challenge. Although I disagree with Elaine Scarry's statement of wholesale failure on this front when she asserts that there is no language for pain, I realize the lengths to which clinicians and patients must travel in order that the patient's corporeal and affective experience be communicated in some way from the one who experiences it to the one who has to diagnose the problem and help to solve it in some way.

I've been teaching clinicians close reading and creative writing in an effort to improve their power of listening to their patients and receiving what they convey. If the listener knows the power of features of narrativity-temporality, spatiality, metaphor, narrative situation, desire-he or she might value the message-carrying capacity of all that the patient emits, whether in words, silences, gestures, or bodily signs. By respecting the integrity and epistemic wealth of the patient's meta-language, the clinician might be less likely to be trapped into prematurely categorizing the patient's utterances into restricted diagnostic categories and more likely to at least wonder what all this might represent and mean. And then, perhaps, there is the beginning of telling and listening about pain.

Dr Malgorzata Dawidek

Dealing with Pain: Visual and Linguistic Representation of (Self)Soothing in The Art Project Entitled "Body Texts"
Background: The question of the influence of a body condition on art has been explored by artists such as Mexican painter Frida Kahlo, American photographer Cindy Sherman and Polish sculptor Alina Szapocznikow. It also has been widely debated in the field of history of contemporary art and humanities, with scholars such as Maria Pia Di Bella, James Elkins, Ewa Domanska and Louis Kaplan arguing with Susan Sontag's and Georges Bataille's theories.However, these perspectives have presented mainly the context of language resistance to illness and have not adequately addressed the issue of linguistic and visual representation of self-soothing process during illness.

Aims: My artistic project entitled "Body Texts" addresses the issue of the representation of pain with special attention to the sound, written and physical attempts of self-soothing, self-supporting, self-curing, self-caring as a particular stage of overcoming the illness process. It brings the art and the language together with psychological and medical aspects.

Specifically, in my project, I look at the phenomenon of the human body as a repository for memories, in order to reconstruct and show methods the body uses to deal with extreme states such as pain and loss, linguistic barriers, inexpressibility of emotions and feelings. In my work I discuss the perception of contemporary body which functions in the category of a synecdoche of the social system with its concessions towards normativeness, because the condition of the body as a healthy organism is an indicator of what is acceptable and what is socially marginalized.
I argue that the corporeal condition is inscribed into an individual human body as a part of its identity and as such opposes normativeness. Furthermore, it is a subjective feeling and requires an individual set of methods to survive in the extreme situation.

Method: I interview people with the PNH (Paroxysmal Nocturna Haemoglobinuria) and combine photography with both their descriptions of chronic pain and attempts of self-soothing.

Results: I will present the result of my research as a photographic series entitled "Body Texts", which will visualise and report individual narratives, as well as corporeal and mental experiences of dealing with crises. These will disclose corporeal reactions, positions and gestures, which will then be analyzed to reconstruct bodily behaviours as a subjective language code.

Conclusion: Close examination of a linguistic description of a body condition confronted with the visual representation of pain, will shed a new light on the aspect of individual processes of self-soothing as a key stage of dealing with illness, barely recognized in art.

Dr Malgorzata Dawidek (practice-led, PhD research, Slade School of Fine Art/UCL)

Natashe Lemos Dekker

Destroying and creating subjectivity through suffering and pain at the end of life with dementia
According to Elaine Scarry, pain destroys and robs the self of its subject. Pain is often considered as that which breaks life, disrupts meaning, and destroys dignity. Similarly, dementia has been described as a disintegration of the self. All too often, people with dementia are considered to be living an undignified life, or stereotyped as empty shells and zombies, as if the person is not there anymore. This can result in the dehumanization of the person with dementia.

While both pain and dementia can separate one from the world, this paper focuses precisely on the re-humanizing capacity of pain at the end of life with dementia. In suffering we recognize people with dementia as human and as being present, precisely because of their capacity to suffer. Based on ethnographic fieldwork in nursing homes in the Netherlands I will pose the question how we can understand such instances wherein pain simultaneously destroys and creates subjectivity.

Ethnographic data shows that in the process of dying, when the person with dementia is in pain and suffering, family members and caregivers attune to the subject and the human becomes visible. This dynamic emerges from the idea that family members had already lost their loved one before biological death and is closely tied to the notion that suffering at the end of life with dementia is useless and undignified. It was observed that death is then welcomed as a liberation of suffering, pain, and loss of dignity.

However, pain can only re-humanize if it is recognized. The body in pain thus needs to follow certain codes of conduct, so that the other, the observer, the caregiver knows it is in pain. In broader terms, how can we account for pain narratives that cannot comply to the norm? This will depend on the capacity to apprehend someone else's pain, which can be challenging in the specific case of dementia.

Natashe Lemos Dekker PhD Candidate University of Amsterdam

Dr Sarah Jane Dickenson

Pain and the playwright: Communicating unseen pain on stage

How do you represent the complexity of pain and the dynamics of disavowal, privacy and politics on stage? How do you explore the topic of ongoing chronic pain in a medium - that of playwriting - that continually looks for resolutions? The communication of unseen pain is an area I am currently exploring in a playwriting context with the International Theatre Company Graeae. Graeae is a force for change in world-class theatre, breaking down barriers, challenging preconceptions and boldly placing disabled artists centre stage.

In this presentation I will be exploring the process of articulating the private experience of pain, taking in the complexity of its manifestation in culture and in human life narratives and considering the move of the individual from ambivalence and privacy regarding chronic pain towards a representational practice that can feed and inform theatre and performance.

Dr Sarah Jane Dickenson is a Playwright - Researcher. She experiments with form as a way of realizing our complex relationships with memory and personal narratives. Questions of engagement and empowerment are at the centre of her research practice. She works extensively in participatory and community settings. She has been commissioned or funded by organisations as diverse as the Goethe-Institut to the Wellcome Trust. Her latest plays to go in to print are CBA a play for secondary school people to perform and That Berlin Moment, both published by Barbican Press. Sarah Jane is currently a Senior lecturer and National Teaching Fellow in the Drama department at the University of Hull.UK.

Dr Preeti Doshi

Challenges in managing pain in India

India is a unique country with amalgamation of diverse ethnicity, religions, cultures and beliefs with a massive population of 1.3 billion spread across 28 states and 7 union territories. People here communicate in about 114 different languages with 18 official languages. Although the national language is Hindi and considerable number of people learn English for commercial, educational and political interactions, there still is a proportion which only communicates in their mother tongue.

As pain is invisible with serious consequences if untreated, it is essential to elicit a detailed history for its effective management. Hence it is communication skills which play an extremely important role in understanding an individual's pain. It indeed is an art which all professionals involved in the pain management have to develop. In India, there also is a huge rural population where even the same language has peculiar words which may be sometimes difficult to understand. Patients are often asked to rate their pain on a scale from 1- 10: mild (1-4), moderate (5-6), and severe (7-10). Sometimes smiling and frowning faces are used as visual aids to help both doctor and patient convey what the numbers signify. It may be desirable to develop some more useful methods of communication which can be universally applied in situations where language is not practical.

Although pain sensation is universally similar, the ways to express may vary depending on cultural beliefs. Cultural differences in response to pain compound the inherent challenges of communication. An understanding of the impact of culture on the pain experience is important in assuring effective and culturally-sensitive patient care. Behaving in a dignified manner while being in pain is considered very important in Indian culture, and a person who is assertive or complains openly is considered to have poor social skills. In cultures where evil spirits are believed to cause illness and pain, patients may talk about their suffering as punishment. In many Indian religions stoicism exists. Stoicism in the face of pain may be common among Buddhists who believe acceptance of suffering leads to spiritual growth.

As regards to the medicines for pain management also there are a variety of myths which prevent optimum management. There is stigma about the gold standard analgesics [Opioids] being addictive which prevents its use even when indicated genuinely for refractory pain. There also is a myth amongst lower socioeconomic background that injections are more effective than oral analgesics. Similarly, there often is great reluctance for implantation of devices for pain control in refractory conditions.

Considering the above factors, pain management remains quite a challenge in the given scenario with the existence of lingual, social and cultural limitations. We hope to have advances in communication methods to have a better rapport with the patients to improve outcomes in management of pain.

Prof Christopher Eccleston

Embodied Pain: exploring the boundaries of possible being

All experience is embodied (intimately physical) and embedded (specific to social and cultural norms). It is only at the limits of embodied and embedded perception that we get to explore what is knowable, what is doable, and what is liveable.

Pain is one of the ten neglected physical sensations of embodied being. In this talk an approach to embodied experience that focuses on limit experiences will be explored. Pain will be specifically explored as the archetypal embodied perceptual experience. Pain is re-presented not as a sensation but as a defensive response to threat.

A three systems model of defensive pain is presented and explored. What is at stake in pain is always identity who am I as the person in pain. We explore together the limits of possible being in pain.

Prof Maria Fitzgerald

The science of pain: why does it hurt so much?

Pain is a product of activity in the central nervous system. It may begin with damage or inflammation of nerves, joints or internal organs but when it persists, the pathways and networks in the brain itself are altered, resulting in a central amplification of the pain which is hard to control. Individuals differ in their pain sensitivity and in their susceptibility to developing long term chronic pain and this is partly due to their previous pain experience, particularly in early life. Current research into new pain relieving drugs will need to take this individual variability into account.

Dr Jens Foell

Black and yellow flags, brown envelopes and street level bureaucracy
The role of processes of social administration in the emergence and persistence of chronic musculoskeletal pain

Background: Chronic musculoskeletal pain is a major burden on affected individuals, their significant others and society at large. Anxiety and depression are commonly experienced in conjunction with chronic pain. Musculoskeletal and mental health conditions are leading causes of health-related worklessness. Whilst the protracted and contradictory "journeys" of patients with chronic musculoskeletal pain through healthcare systems are widely researched, the influence of the parallel processes of social administration relating to the regulation of worklessness have not been given enough attention despite the presence of a social gradient in pain intensity and pain disability. Sickness-certification (Fit-note) and working capability assessments are exemplars of the politics of pain. Public encounters are at the same time conversations about pain between "street-level bureaucrats" (Lipsky) and claimants.

Aims:
To bring together an understanding of historical literatures on musculoskeletal disability with contemporary interviews of patients' "lived experience" of chronic musculoskeletal pain;
To explore how patients make sense of their illness, their experience as recipients of welfare benefits and identify how and to what extent these experiences interrelate;
To identify how psychosocial information is recorded in working capability assessments;
To look historically at how systems of classification in welfare administration (e.g. working  capability assessment) represent psychosocial information and how this has changed over time.  

Method: Discourse analysis of the manuals and policy documents structuring the process of sickness certification and working capability assessment with particular focus on pain assessment and the recording of psychosocial information.  Narrative interviews with claimants and "street-level-bureaucrats" such as doctors or job-centre advisors and other workers involved in the process of regulating health-related worklessness

 Results: Preliminary work leading up to this research proposal highlights the presence of contradicting strategies and paradigms, such as a resource-orientated paradigm for disability assessments and the strategy of having to legitimise their predicament by reports focussing on deficits and impairments.  

Conclusion: The bureaucratic processes of the welfare state deserve attention in relation to the politics of pain.

Dr Jens Foell Senior Honorary Clinical Lecturer Queen Mary University of London

Dr Jens Foell & Kath Lovell

Chronic pain and mental health - bringing together lived and clinical experience to develop innovative strategies to address both issues in primary care

This session aims to place co-production at the heart of a new discourse around pain. We will encourage participants to consider how health care professionals and service users can work more effectively together, either in a treatment or educational context around the topic of pain.

The style of this session is inspired by, and builds upon successful models of co- production and co-delivery of education/training products between service providers and service users about personality disorder.

This interactive session will be facilitated by a General Practitioner and a service user with lived experience of chronic pain and mental health issues. The discussion aims to unpick some of challenges faced within primary care in thinking about and managing chronic pain especially alongside the co-morbidity of mental health issues, including the links between pain and mood state and the long term effects of poly-pharmacy/addiction to psychotropic and analgesic medications.

The discussion will begin with an interview style approach to question and explore how both the doctor and patient 'encounter' the issue of pain, whether the 'pain' is felt physically or emotionally and seek to drawn upon the experience of both to open up fresh dialogue about this challenging issue.

Both facilitators will think together and invite audience participation to help conceptualise new ideas in terms of considering and managing pain effectively. But above all, the session will inspire and provide a fresh sense of validation for those who treat and for those who experience pain.

Kath Lovell - service user with lived experience of chronic pain and mental health issues, also Managing Director of Emergence (service user - led organisation for personality disorder) Email: kath@emergenceplus.org.uk
Dr Jens Foell - General Practitioner, Imperial College Email: j.foell@imperial.ac.uk

Wendy French

Vikky Riley, Senior Specialist Cancer Nurse Macmillan Cancer Centre, UCLH
Wendy French, Poet in Residence April 2014 to May 2015

There can be few greater emotional pains than being told you have cancer. The word still carries a huge disability sentence. Patients and carers at the Macmillan Centre experience this emotional and physical pain. Time with professionals can be limited due to the pressure of many people waiting each day for appointments. We set up the Creative Word group in order to give patients and carers more time to be able to think and explore more closely what may be going for them in this time of need. We wanted cancer sufferers to be able to tackle the impact of emotional pain on themselves and their loved ones while their bodies are undergoing treatment and diagnosis.
Vikky Riley will talk about her role in the Centre which opened in 2013. She'll discuss the idea behind a Macmillan Centre and talk about the medical side to the work and the different therapies that are open to patients and in some cases their carers. She will talk about the purpose of The Living Room.
Wendy French will talk about her role at the Centre and about the weekly group that is run there. She will talk about the incidental work that goes on, in the lobby, in the lifts, in the teenagers' ward. Some of the patients' work will be read and their response to what the group meant for them. The debate will open as to whether this sort of work can enhance a person's life emotionally or whether it's just a distraction from the routine work of living with cancer.
Stanley Kunitz said 'Our job at any given stage of life, is to create a self we can bear to live and die with.'
Both the learning and development of the sciences and the learning and development of the arts are essential to informed human existence. Both science and poetry are concerned with seeking patterns to our universe - but each targets a different part of the brain and consequently satisfies different desires. Neither science not poetry can exist in a perfect state without the other. We need the intricacies of form and language, the laws of science in order to have a better understanding of what it is to be alive. Healing does not just lie in the hands of the medical profession. Physicians have a specific job to do to help prolong the physical and emotional health of the body. Psychiatrists are concerned with the task of keeping their patients physically and emotionally safe, often from themselves, but the arts with their healing component, particularly the reading and writing of poetry, have a greater part to play than has hitherto been recognised. The immediacy of reading a poem, writing a thought, hearing someone else's poem written within a group, can be cathartic. Grieving for the past life is a central theme to our work whether a conscious or unconscious interpretation of issues discussed and written about.

Rebecca Goss

Pleurisy

My name is Rebecca Goss. I am a poet, with two published collections. The most recent, Her Birth (Carcanet/Northern House) was about the death of my 16-month old daughter in 2008. The book was shortlisted for major, international literary prizes and earned me a place on The Poetry Book Society's Next Generation Poets list, 2014.

The publication of that book means I have written extensively about emotional pain, but last year I suffered pleurisy and have consequently written a sequence of poems about physical pain and illness. Pain is not a word I would use in a poem. It's not specific enough. It's not precise. But pleurisy left me feeling wretched and bewildered, and I wanted to write about it. Having never been ill before, the only pain I'd really experienced was the pain of childbirth. But that was entirely different. It was quick and purposeful. The pain of pleurisy was explicitly unkind. I spent a lot of time in my sick bed, mentally trying to articulate what I was feeling. Where was the language for pain? I discovered this to be a well-mined subject, and it made for some interesting reading. My favourite quote came from American essayist and academic Elaine Scarry, saying "physical pain does not simply resist language but actively destroys it". I have always been interested in finding the language for 'difficult' things. My poetry explores the more taboo subjects of bereavement, sex and 'the body'. I propose to read my sequence of poems about pleurisy at the Encountering Pain conference, and discuss the challenges I experienced in writing about pain.

Pleurisy

At its most acute,
she pictured an orb,

phosphorescent,
in its snare of rib.

It eased to the pressure
of a handstand,

executed 
by someone fully grown

on her chest,
and every cough

discharged small bombs
across her back.

In her most breathless
state, there was a tree -

cankerous and scratching,
malevolent in its reach

around her frame. 
She wanted it uprooted,

hauled outside her body,
just to pick off the lungs

snagged amongst branches.

Pip Hardy

A Patient Meditation: digital storytelling and the re-presentation of pain

Pip Hardy, director of Pilgrim Projects Ltd; co-founder of the Patient Voices Programme; honorary lecturer at the University of Manchester Medical School; PhD candidate Since 2003, the Patient Voices Programme (www.patientvoices.org.uk) has worked with more than 1000 patients, service users, their families and carers, as well as the professional staff who deliver care, to enable them to create their own digital stories of health and illness, care and carelessness, disastrous mistakes and miraculous cures, hope and hopelessness, jubilation and resignation. Our hope is that, by sharing these stories, important lessons will be learned, understanding will grow and healthcare will become more humane and compassionate.
The vast majority of our storytellers do not speak of physical pain, although physical pain is often one component of an overall experience of pain. They speak of the impact of pain - whether mental, emotional, spiritual or physical - on their lives, their relationships, their work, their families. But it is rare to hear a story that explicitly describes the experience of physical pain.
Attempting to describe physical pain is difficult. And we live in a culture that does not encourage open discussion of pain. Part of our role as digital storytelling facilitators is to help people find a way to express their suffering and share their stories in a way that validates and honours their experiences while enabling viewers to walk in the storyteller's shoes for a few moments.
So, when I developed a frozen shoulder, I wanted to try to represent - and re-present - the pain, and my attempts to cope with it.
The result was a digital story called A Patient Meditation. Based on the Buddhist meditation on the Four Foundations of Mindfulness, that is, meditation on the physical body, meditation on the feelings that arise, meditation on the thoughts that arise and meditation on phenomena, I explore the nature of pain and my response to it through words and images.
I hope that the story will prompt reflection and discussion on the nature of pain, our relationship to it and some strategies that can be employed to relieve the suffering of chronic pain.

Carlos Leguizamon

Social Sciences and Humanities Contribution to Pain Research: Notes from Ethnographic and Auto-ethnographic Accounts of Black and Ethnic Minority People (BME) in Chronic Pain

Based on clinical knowledge, pain could occur acutely or chronically, individually or collectively and, above all, it could affect body-mind concurrently as evidence from neuroscience increasingly reveals (Lieberman, 2015). Also, pain is related intimately to language (Das, 1995), culture, and communication. Further, the experience of pain occurs to almost all men, women, children, babies, elders, people from different ethnicities, sexual orientation, religions, disabilities and social and political affiliations, thus making pain an ordinary human experience. Those who do not feel or experience psychical-mental pain are exceptional and seen as lacking some fundamental human traits. In her historical work on the "Story of Pain," Bourke (2014) proposes the use of the category people-in- pain in contrast to pain as a category by itself, thereby demonstrating the epistemological implications that each category carries. While the first category would imply knowing pain from the perspective of a human relation between the sufferer of pain and the listener, seer, witness or knower of that pain, the second would lead us to know and articulate an "existing" object localised either in the body or the mind as has been traditionally the case in some bio-medical research. Using Bourke's proposal which echoes a growing debate in the social sciences, philosophy and humanities when thinking about pain, this presentation will address, on the one hand, some of the emerging theoretical arguments from these debates and, on the other, with respect to the empirical part, the presentation will use notes from an ethnographic and auto-ethnographic study conducted during 2012 and 2014 in the South East of London with BME communities.
CML/2016

Catherine Long & Doran George

Contemporary Dance's Impasse: A conversation about the utilization of pain within the choreographic process of a dance solo

In dance performance, pain is invariably invisible. Conventionally dancers must display evidence of training, skill and talent in order to be watchable. While pain and injury is an expected part of the working lives of dancers, any visible evidence thereof is seen as oppositional to virtuoso movement, and is thus vanquished from performance. This presentation explores how, in the making of the solo Impasse, I as dancer and Doran George, a choreographer, and dance historian, directly addressed the question of pain. In my movement range and unconventional physical structure, I exceed the normative body at the center of contemporary dance training and aesthetics. Yet, in this largely visually based art form, my visible differences, which cause me to be identified as a 'disabled dancer', overshadow the constant discomfort that moving entails for me. In Impasse, however, my experience and expression of severe chronic pain figured centrally to the choreographic process and performance. At "Encountering Pain" George and I will examine how engaging with, rather than disavowing pain can give rise to a different understanding of contemporary dance virtuosity.

I have a unique physical structure that impacts my motility, causing chronic pain, and I do not have a left arm. When I was born it was unknown whether or not I would ever walk. I have been exploring dance and experimental training regimens known broadly as Somatic Practices partly as a way to manage my pain and the other daily life experiences with which I am confronted. Yet my body is configured by conventional training practices as 'unable' to dance. The creation of Impasse was preceded by my artist's residency at UCL's Institute of Cognitive Neuroscience, where I was part of Prof Patrick Haggard's team. This is when Doran George and I began our collaboration, primarily via email and Skype. Our collaboration continued into working physically together, with a focus on dance and Somatic practice.

To open up space within contemporary dance, George and I began with the assumption that my body and movement range are sufficient. We explored the kinetic nature of my movement, a set of gestural patterns that are generally associated with incapacity, determining to understand my movement range as embodying capacity. Yet because pain is an inherent and unpredictable part of moving for me, regardless of the actual choreography, performing Impasse meant experiencing pain that could be invisible within contemporary dance's aesthetic frame. We therefore developed a modality in the compositional form and the practice of performance, that allowed me a range of options in the way that I executed the dance. This afforded me some choice about the amount of pain I could or would experience during the performance, allowing me flexibility to respond to my pain levels on a particular day. We chose to view this as a dancer's virtuosity, an intelligent negotiation of the lived body informed by a specialist understanding of movement, embodied in an appreciation of contemporary aesthetics.

Susanne Main

Exhibiting Pain: The role of online exhibitions in sharing creative representations of persistent physical pain

With the increasing recognition of persistent physical pain, there is a need to develop new methods of conveying the nature and impact of that pain for the individual. Persistent pain is invisible and subjective, making it a challenge to communicate and understand. This can lead to a lack of understanding which undermines the ability of health care professionals and informal support networks to respond effectively to the person with pain.

An alternative means of expressing the persistent pain experience is through creative techniques, such as the visual arts or in writing. Online exhibitions are being used to explore the interpretation of creative representations of persistent pain. One aim is to examine how these may aid a person's communication of their pain experience with health care professionals, friends and family.

Exhibitions, hosted on two social media platforms, are being used to share the creative works with audiences and to gather interpretations of them. Audience members are encouraged to respond to the pieces in online comments, discussing their interpretations and thoughts with one another, including the creators of the works. Analysis of the responses highlights the symbols and signs (semiotics) that are used by audiences to construct particular interpretations.

Overall, the intention is to gain insight into the understandings of persistent physical pain that are constructed through the viewing of creative representations, considering how these vary according to audience demographic. This paper explores the potential of exhibitions, in an online environment, to facilitate the communication of pain through shared works.

Susanne Main, PhD Candidate Faculty of Health & Social Care, The Open University

Dr Teodora Manea

Voicing and interpreting pain, Autoethnographies of medical interpreting

Background of Medical Interpreting:
In the last decade the number of non-English speaking patients that access the NHS has increased considerably. Medical interpreters facilitate the non-English speakers' access to health care. They are bridges between English and minorities' languages and cultures. But the role of medical interpreters - stipulated into codes of practice of the UK interpreting agencies - is mostly constructed on the assumption of an invisible interpreter, a language switcher, conveying the "message only" between a client and a service provider. This reductionist approach to the interpreter's role makes them replaceable with voice convertors via telephone. Their physical presence during the medical consultation is diminished by the defined role of invisibility.
In this context, the process of voicing pain and sufferance not examined, being partially covered by the "professionalism" requirement of emotional neutrality.

Aim:
To understand the process of voicing pain, when the pain is not a first person  experience during medical consultations.
To examine ethical issues connected with interpreters and voice disembodiment.
To analyse the relationships that form during medical and linguistic interactions.

Methodology:
My reflection will start with an interpretive autoethnographical approach (Denzin) based on my personal and professional experience as medical interpreter. The connection between voicing, the others, and the autoethnography as trace will be framed using Arthur Frank's work and postmodern phenomenological and hermeneutical approaches (Levinas, Derrida and Ricoeur).

Results:
Six months of methodically written autoethnographies were the basis of my study. Voicing pain is more than translating words that can mediate the idea of pain. Medical interpreters' situation in medical consultations is an insufficiently explored topic. The autoethnographical process of writing as trace underlined the role of memory, affectivity and signification.

Conclusion:
Voicing pain is a highly emotional process and cannot be separated from the actors involved in it. The professional limitations of medical interpreters' recognition of participation in it cause a particular form of professional stress. Autoethnography as method can be helpful to understand the traces of the voicing pain process and to offer a therapeutic distance.

Rebecca Pardo & Montse Morcate

Illness and pain in photography: from analogic to digital context

Rebeca Pardo PhD. Professor of Photography. Fine Arts Department. University of Barcelona. Communication Department. University Abat Oliba CEU.

Since the beginning of photography, images have been used by doctors and photojournalists to show the most painful and dramatic symptoms of illness. Those images, among other factors, have created a collective imagery of some chronic, degenerative and/or terminal maladies that has contributed to stigmatize some patients considered as dangerous, violent or highly contagious.
Within the new digital context, the hybridization of smartphones with cameras and the access of common users to communication and social platforms online as blogs or Social Network Sites (SNS) are amplifying not only the quantity of images that are being taken and shared/published, but also the themes that are exposed publically and the responsible or author of the photographs.
Patients, carers and relatives are representing their experiences with illness and pain in daily basis with images that have an audience of people that usually have similar conditions and that are connected by what Marianne Hirsh called "affiliative look". These new practices around domestic or family pictures related with these themes are changing the idea of what is worth photographing or sharing, the social image of the patient (specially important in cases of mental illness) and the role of the image that can be considered as an element of connection and co-presence for some people affected by geographical or physical barriers and even a tool for fighting for awareness and social care. In these new type of images, pain is something always present but frequently shared with a smile or a hug that try to humanize and socialize the emotion.
Keywords: Pain, images, illness, SNS, co-presence, awareness.

Dr Jennifer Patterson

Theoretical And philosophical discussion of Phenomenology
When a person expresses the pain they feel, whether it is through a visual or verbal communication, that communication represents the truth of their pain. One person does not feel the same pain as another and we have both shared and different images, metaphors and forms of representation. Some of these derive from our wider society and specific culture, some are familial, others are more individual, or aspects of lived experience that we have accumulated throughout our lives and that have enormous numbers of referents. In other terms, the signifiers (words or image) we use to tell this truth will have many differences and some similarities. Indeed, the truth of the sensation of pain means different things to us in different moments of time. It is a truth only in the present of the moment of its creation and one that may or may not appear again. When correlations appear the same they will mean slightly different things to each of us individually or collectively because that is how communication works. When we read a book or look at a picture, we look or read differently on different days, seeing slightly different aspects, revisiting to refocus. Thus, the communication becomes a representation of pain manifest in a language that can be communicated.

Yet this is not the story of the whole process. In order to conceptualise pain, the individual moves from an experience that is felt or sensory to one that is cognate, in which the sensation has been conceptualised, translated and recognised. This process necessarily involves an observation of self and a study of the affective phenomenon as well as an active disengagement from the sensation takes place. The experimental process broadly describes the method of inquiry known as phenomenology originating in the philosophical work of Husserl, Heidegger, Sartre and Merleau Ponty. This paper locates feminist correspondances beginning with de Beauvoir, Irigaray and Butler and offers a re-reading of postmodernist reflexive practices through the work of Michel Foucault. It will explore why experiencing pain, and illness offers patient-centred research; why as an embodied practice there have been issues within feminist thinking, why phenomenology is associated with qualitative research and therefore its lower status in medical research, and its a transformative potential for self authoring.

Dr Jennifer Patterson, Senior Lecturer Association for Medical Humanities (AMH) 2016 Conference Convenor Principal Investigator, Listening to the Patient Principal Investigator, Natural Learning and Environments Centre University of Greenwich

Clare Plumley

Pulling focus: from pain to play

Is it possible to encourage interference, disrupt a faulty pain system and extend sensory experience via visual language/immersive environments? How might we challenge the perception and experience of pain though play, shift the focus to sensation? I have a chronic pain condition and as a result of this have developed heightened sensory responses to my environs and to my internal physiological activity. Instead of trying to block pain as it arrives I have learned to go into it, explore it's fluctuations, challenge any sense that it might be fixed. I use sound, shape, texture to transform the experience of pain into sensation, have an internal sensory system, like a sort of self-taught synesthesia.
I presented a paper entitled: "Brain in Pain: body mapping, pain visualisation and mapping the invisible' at a research workshop at 'Electronic Visualisation in the Arts' Conference in London in July 2014.(1) During my presentation (2) I talked about the signalling system of a brain in pain, 'brain and pain maps', ideas of induced synesthesia and brain plasticity. I wondered whether we might explore the idea of sensory orchestration, neuroplasticity and the phantom or virtual body to patients through the use of technology and looked at the work of artists who are using technology to explore different models of embodiment.
My current focus is autoethnography, I have started to produce artwork based on my experience of re-processing pain signals, am investigating the qualitative and experiential nature of pulling focus from pain to sensation. "My Internal Shazam" is a piece referencing the Shazam app, which creates an acoustic fingerprint of a song which it then identifies. I have taken the moving graphic and substituted a series of patterns and textures developed from drawings of my own physiological response to a piece of music. This is my first investigation into how I might represent the body as a resonating chamber, as a space in itself for play. It's a personal study of physiological and emotional responses to external stimuli, of the relationship between sound, shape, sensation. These images are super-imposed onto an electro-therapeutics image from 1910, referencing the electrical signalling of our pain systems and experimental approaches to the treatment of pain. "Razor to Ribbon" is an illustration of visualisation techniques I use which morph one material and image into another to attenuate pain. "Pain Geometry" sees me simultaneously go into a sensation and drift back out into the world, this is where I momentarily disappear by transforming pain into a series of shapes which slowly dissolve into sound, music, vibration. The experience of pain is a constant push pull process, one in flux. Through this work I hope to illustrate the subjective experience of the 'plastic' self, explore pain perception and the potential for different body schemas or models to emerge, and ultimately to see how I might model that within technological environs.
At the "Encountering Pain" conference I'd like to display my work and run a beta version of a printmaking workshop to explore the sensory experience of pain through visual language. Using my own experience of pain I'll develop visual motifs and symbols which will be made up into stamps for printmaking, these will be adaptable (you'll be able to layer them up using more ink, lay them side to side in a repeat pattern or make other motifs/images from the stamps I provide). I'm in the process of setting up a collaboration with pain scientist Andrew Dilley at Brighton and Sussex Medical School and working with his patient cohort to develop a visual language for pain, so I'd like conference participants to come and try the activity in order to gain feedback on how I might alter/adapt the activity, and to talk through my ideas for using these designs within a technological or educational environment. I'm interested in how we can ensure patients voices and experiences are included in design for health, in co-design and where subjective patient reporting might reside within the ever expanding 'quantified self' movement. I'm hoping that the work I'm doing might feed into broader discussions about technology, perception, embodiment, health and methods for self-report.
(1) EVA conference paper: http://www.bcs.org/upload/pdf/ewic_ev14_s7paper10.pdf (2) EVA conference slides: http://www.slideshare.net/clareplumley/brain-in-pain My website: https://www.behance.net/interpl8

Emma Sheppard

Cripp(l)ing Pain

Pain is often considered to be an individual experience, but also a universal one - and there is very little to differentiate "normal pain" (acute pain, the pain of intentional wounding or accident) from chronic pain; the two share a name and therefore are often assumed to be the same, only with chronic pain lasting longer.
However, chronic, long-lasting pain is distinctly different from acute pain. The paper will present a part of the findings of my PhD, which explores experiences of pain for disabled people with chronic pain who also engage with BDSM play, and thinks through the notion of pain with a crip approach. In taking a critically crip approach, I seek to disrupt normative, ableist understandings of "normal" human experience, disability, and impairment - using crip theory (McRuer 2006; Kafer 2013; Sandahl 2002), as well as and Goodley (2014) and Kumari Campbell's (2009) notions of dis/ability and ableism.
The paper will take two themes that are currently emerging from my research - firstly, how time is a key factor, not just in distinguishing chronic from acute pain, but also in how pain is experienced, which in turn alters the identity of those who live with chronic pain. The second emerging theme is the notion of control, not just in terms of current heath regimes, but in terms of how practices of controlling pain can be cripped, exposing normative constructions of appropriate reactions to pain.

Affiliation:
PhD Researcher, Department of Social Sciences, Edge Hill University St Helens Road, Ormskirk, Lancashire, L39 4QP Email: emma.sheppard@go.edgehill.ac.uk

 Supervisors: Paul Reynolds and Dr Allison Moore

References:
Goodley, Dan. 2014. Dis/Ability Studies: Theorising Disablism and Ableism. Abingdon: Routledge.
Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington and Indianapolis: Indiana University Press.
Kumari Campbell, Fiona. 2009. Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave MacMillan.
McRuer, Robert. 2006. Crip Theory: Cultural Signs of Queerness and Disability. New York: NYU Press.
Sandahl, Carrie. 2002. "Queering the Crip or Cripping the Queer?: Intersections of Queer and Crip Identities in Solo Autobiographical Performance." GLQ: A Journal of Lesbian and Gay Studies 9 (1 - 2): 25-56.

Dr Joan Simons

Practitioners encountering pain in children with complex needs

Authors: Dr Joan Simons, Professor Bernie Carter, Dr Lucy Bray, Dr Janine Arnott.

Background: Children with cognitive impairment have a higher number of pain episodes compared to their healthy peers and these children can experience frequent and significant pain, sometimes on a daily basis. Identifying and managing this pain is often challenging for healthcare professionals and parents and some symptoms persist even when treatment is instigated.

Aim: The aim of this paper is to present findings on the ways in which health care practitioners encounter pain when working with children with complex needs.

Methods: The data reported here are from semi-structured interviews undertaken with health care practitioners based at a tertiary children's hospital in the UK. These data are part of a larger mixed methods study. Data were analysed using thematic analysis.

Results: Nineteen healthcare practitioners from a variety of disciplinary backgrounds (e.g. neurologists, nurses, physiotherapists) and with different experience (1-27 years) of working with children with complex needs participated in the study.
Practitioners reported that they encountered uncertainty in assessing and managing the pain of children with complex needs. They used a multi-layered approach to managing pain in these children including taking time to learn the individual child's pain expressions, liaising with parents, learning from colleagues and using their skills of observation. Only one practitioner reported having formal education on managing pain in children with complex needs.

Conclusion: There is a need for practitioners have support to increase their knowledge and confidence in the management of pain in children with complex needs.

This study was funded by WellChild.

Dr Jen Tarr and Dr Elena Gonzalez-Polledo

Images and Memes as Expressions of Chronic Pain on Social Media
Social media has enabled new forms of chronic pain expression as well as enabling new communities to emerge around shared experiences of pain and illness. As part of the Communicating Chronic Pain project, we examined chronic pain expressions on social media with a focus on sites that are primarily non-textual, such as the photosharing site Flickr and the Tumblr microblogging platform. To what extent do the images and memes shared on these sites challenge or refigure our understanding of traditional illness narratives as ways of communicating pain?

Dr Virna Teixeira

The Visual Diary of a Girl with Brain Tumour

Frances Kurk is a Polish-Canadian poet who lives in London. She has exhibited visual work and performed solo and collaborative poetry, music, and interdisciplinary projects in various parts of Canada, USA, Cyprus, Ireland, and the UK. Frances was diagnosed with a Grade II oligoastrocytoma since 2007, which was re-classified by the WHO as a Grade III anaplastic astrocytoma. She underwent three surgical treatments for the relapse of her tumour, besides radiotherapy and chemotherapy.
Frances is currently living between England and Canada, where she receives her treatment. She created the blog 'Bubblegum Dustbunny Destroyer' (http://bubblegumdustbunnydestroyer.blogspot.co.uk) in 2010 as a visual diary and a platform to cope with the pain, the uncertainty of her condition and 'to deal with subjective horrors'. Although she is a poet, her wounded narrative is through photography: Frances documents with pictures the whole process of her treatment, from the scar in her scalp right after the surgical procedures - the last one is now her Facebook cover - to her radiotherapy sessions which she attends dressed in sequined clothes. The pictures are very stylish, and are accompanied by notes of her feelings. She uses it also to communicate her follow-up with her community of friends, who interact with her posts through Facebook.
Frances herself explains this documental style on her blog's bio: 'It's the cancer that's not a cancer. It's aggressive but not aggressive. It's high grade but actually it's intermediate grade, though they used to call it low grade. What is it. WHAT IS IT. I hate it I hate it I hate it. But at least I've been getting some glam photos out of the situation.' She also uses the blog as an adjunct to a fundraising campaign for Brain Tumour UK in 2011, and hopes that this public exposure might benefit someone.
I came across France's work through another poet. Being a poet myself, and a neurologist who worked for years as a neuro-oncologist in a large cancer center in Brazil, I became fascinated by her audacious and unusual way of reporting her physical and emotional pain. I intend to explore and understand more this unconventional experience that helps to break the isolation and stigma that people with brain tumour and other brain conditions suffer, which represent important aspects of emotional pain that neurologists encounter while treating these patients.

Pat Walton

Chronic pain within a family context: An art project informed by lived experience
Pain is an entirely subjective experience, which we may struggle to articulate and share with others. Living with chronic pain has devastating effects on patients, but also on relationships and family life. Artistic representations of pain tend to be reduced to the sufferer's experience rather than an on-going family strain.

The project aims to portray photographically everyday life of families living with chronic pain in order to express its effects on patients, spouses, and children and to initiate a shift in perspective of understanding chronic pain as a phenomenon affecting the social realm around a patient through visual art rather than clinical analyses of the patient only.

My work is developed on the grounds of semi-structured interviews with four families, each with a parent suffering from chronic pain. By employing an interpretive phenomenological approach the participants' lived experience of chronic pain is focused on.

It is important to note that I approached the families as a fellow sufferer rather than analysing chronic pain from a clinical objectified perspective. This facilitated a particularly positive way of understanding the individuals' positions within the families traumatised by the on-going stress of chronic illness.

The images aim to visually validate the families' experiences, whilst potentially providing medical professionals and general public with a visual reference guide to life with chronic pain from a patient's and his family's point of view. I hope to give evidence about the traumatic life of an invisible illness.

"Artistic works in music, dance, and visual arts are a media for expressions of meaning and the 'voice' to suffering which is inadequately expressed in words. Artistic expressions are the conduit to personal and universal experiences of suffering and, in return, provide relief and give meaning to that experience" (Davis, A.A.; Davis, M.P., 2010. Art in medicine and the art of grief. Progress in Palliative Care, 18(5), pp. 266-269)

Pat Walton, PhD student University of Cumbria

Prof Joanna Zakrzewska

Non English speaking pain patients - do images help?

Not only is pain difficult to describe but this becomes even harder when it has to be done in your non- native language. Joanna Zakrzewska will describe how she has used them in her facial pain clinics to help provide a more comprehensive history of the patients pain when English is not the patients first language.

Dr John Wynne & Tim Wainwright

Aversion and Transformation: Pain and renewal in organ transplantation

This presentation, abundantly illustrated with both sound and visual materials, will explore the experience of pain by organ transplant patients. Drawing on our previous research and creative practice with heart and lung transplant recipients and our current work with kidney and liver transplant patients and live donors, we will look at the ways in which pain and trauma are normalised. As Victoria Hume writes about one of our participants...

Transplant patients live with trauma. To listen to Justine, a lung transplant patient, describe having a drain put in her chest, or her latest collapsed lung, is to appreciate that the greatest dramas are absorbed into everyday lives.

But despite such acceptance, pain doesn't lose its transformative power: '...these events that happen, and painful at the time albeit they were, looking back on it... I'm still here, I'm still happy. There's still so much in spite of those painful things.' (Sanjay, heart transplant recipient). Of course, transplantation itself holds out a powerful promise of transformation, a promise which paradoxically pushes against the 'sheer aversiveness' of pain (Scarry).

Pain in the medical setting crystallises several of the attributes of physical pain delineated by Elaine Scarry in the context of torture. Agency becomes a complex and sometimes troubling concept as the patient struggles to maintain identity and a sense of self-control over their body, access to which must be surrendered to varying degrees over long periods of time. In hospitals there is also an 'almost obscene conflation of private and public' (Scarry). Although privacy curtains are sometimes employed, sound doesn't respect such flimsy barriers:

Night-time was always more difficult and the noises more disturbing. Then you could hear other patients in nearby rooms and their distress, pain and desperation. (Heart transplant recipient Kate Dalziel)

Our sound recordings of patients go beyond the limitations of linguistic expression for understanding pain and suffering: they are made with sensitive microphones at close proximity, permitting an intimacy that can at times be uncomfortable, as one listens to the effects of the malfunctioning body on the voice and hears the paralinguistic evidence of emotion:

Feelings of fragility are pervasive and clearly audible in these bedside recordings: every tremor and lapse; the halting and wheezing of breath; the breaks in which speech is overwhelmed by tears; the pain of what is said; the grain of how it is said. (David Toop)

Wilfred Bion distinguishes between knowledge of suffering and experience of suffering and emphasises the essential role of experience in emotional development. Although some patients turn down the offer of a transplant (a choice that inevitably leads to other kinds of pain), transplant recipients voluntarily assent to experience pain of varying degrees across the spectrum from physical to psychological. They may arrive at the need for a transplant due to a painful condition, they may spend a tortuously long time on the transplant list 'either waiting to live or waiting to die' (Claire Hallas); the medical procedures may bring both intense physical pain and psychological trauma in the form of 'ITU psychosis', and many are tormented by the somewhat misguided notion that in order for them to live 'someone had to die' (Jill Edwards).

Dr John Wynne is an artist and Reader in Sound Arts at the University of the Arts London and a core member of the CRISAP Research Centre. http://www.sensitivebrigade.com

Tim Wainwright uses photography, film and sound to investigate the nature of transformation whilst working with concepts of witness and voyeurism. http://www.timwainwright.com

The artists are currently working with kidney and liver transplant patients towards a solo exhibition at the Hunterian Museum in late 2016. See here for their work as artists-in-residence at Harefield Hospital, one of the world's leading centres for heart and lung transplants: http://www.transplantproject.com

Abstracts

Friday

1A Workshop

1B Workshop

1C Paper Sessions

1D Paper Sessions

Saturday

2A Paper Session

2B Workshop

2C Interpreting Pain (International)

2D Workshop

3A Paper Session

3B Workshop

3C Workshop

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Poster tour Walkabout

Marie Allitt