Final Reflections

 

What sorts of themes have emerged from the conference?

  • Intersection of care and self-care
  • Importance of (auto)biography – a shift back towards academic research as autobiographical work
  • Storytelling and narrative as care/self-care

What might the inter-relationality of care enable us to think about the relationships between media production and consumption?

  • Challenge the strict lines between art and science/medicine, between academic analysis and artistic engagement

What might an “aesthetics of care” look like? How does it differ across media?

  • Tension between exploration and exploitation in the artistic/academic engagement with disability/illness – an aesthetic of care versus an aesthetics for care?
  • Strike a balance between the relationship between artistic and academic engagements with care

How do we make sense of attitudes and discourses of care across geography and history?

  • Need for transnational discussions to make sense of the parallels and differences between practices in different places

How do representations of care allow us to think differently about dependency, agency, responsibility?

  • Care is a political issue – neoliberal subjects, questions of choice and consent – are important here. Mediated discourses of care are crucial here
  • May highlight how our relationship to care changes over of our life-course, as we move into and out of different relationships to dependency.

Next steps/research directions

  • Transnational connections – need to ensure that our discussions aren’t operating in a cultural vacuum
  • Potential for more collaborations between academic and art worlds

 

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Collaborative Work – Artistic therapy following laryngectomy

Wednesday 7th September 2016

By Zoë Shacklock and Gaby Smith

  • Donatella Maraschin (London South Bank)
  • Evangelos Himonides (UCL)
  • Thomas Moors (physician)

Takeaway points:

  • Digital platforms have a huge therapeutic potential, creating and supporting communities of care and reconfiguring traditional forms of medical communication
  • Narrative and performance are transformative practices of care, boosting feelings of confidence and recognition amongst sufferers, and holding the promise of broader political/social change

Maraschin, Himonides and Moors introduced us to their work on artistic outreach with people who have undergone a laryngectomy. A laryngectomy is an invasive procedure in which the larynx is removed – afterwards, you lose your voice (completely or partially), and your ability to eat and breath changes. This has a big influence on social confidence and wellbeing.

Voice rehabilitation therapy that revolves around acting and singing tends to be most effective – patients show better control over their voice, a broader pitch and volume, better endurance, and an improved ability to express emotions. Performative therapy also greatly improves social confidence.

The team produced a documentary about the therapy, hoping that the confidence benefits could be distributed more broadly and globally – watching the experiences of fellow laryngectomy patients helps create an affective community. In line with the broader theme emerging throughout the conference, narrative becomes a crucial form of self-care, allowing people to tell their own stories and identify with shared stories.

A practical discussion of the collaborative network followed, discussing the logistics of organising such a diverse collection of interests and people: grant applications, future directions, online platforms. They introduced a few ideas for using digital platforms in creating therapy communities, emphasising the need to find new forms of medical communication. Their ideas include AV testimonials, Skype as a platform for live interaction, gaming and other interactive tools, and databases of information and narrative.

Digital platforms have a huge potential for making a lasting difference in patient wellbeing on a broad, even global scale. But the team stressed the importance of getting this right – how do you find the balance between database and storytelling, between medical discourse and immersive participation?

Finally, Evangelos Himonides talked about his experience of recording the alaryngeal voice, highlighting the importance of finding ways to measure and analyse it that remains attentive to its particular affordances. He stressed the importance of communicating the voice, which has the potential to transform the social sphere. Finally, he suggested that understanding a voice and communicating that voice is ultimately a way to foster that voice, presenting these mediated/artistic practices as always already a practice of care.

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Keynote 2: Prof. Andrew Kötting

Wednesday 7 September, 2016.

By Gaby Smith and Zoë Shacklock

 

‘B’ is for Body.

 

Prof. Andrew Kötting presents the keynote for the day, giving the conference a flavour of his work in film and art through the making of short films. In his words, these explore how we unconsciously or unconsciously manipulate our mind to omit certain moments of our lives. Commencing the panel by discussing some of the more personal and intimate moments of life, and the detail in his and his daughter Eden’s story, were accompanied by black and white family photos of a father and daughter.

Through presenting the notion of memories as fictions, there is, as Kötting observes a double translation at play. He discusses the way memory translates experience, but how these artistic outbursts translate the memory. In exploiting and exploring his work explores the truth of human relationships, as well as approaching the arts as a type of knowledge, as science as a type of knowledge, and as religion as a superstition, a myth. He notes that there are no wrong answers in artistic truth, because there are no right questions.

In referring to John Carey‘s work, ‘What Good are the Arts?‘, he urges the audience this morning to go tell the story of your life- however difficult this may be. When one’s life is so intwined with the care of someone else, entering into Eden’s world can in part, be a device for holding the whole thing together. After all, he comments, what else is art but the intensely public sharing of experiences and ideas?

Eden and Andrew’s film The World is full of Stupid Men (2014), laid bear questions hidden by answers in what is worth is worthwhile, and in this art and the film form, without it we are lost. Collaborating with Glen Whiting, Eden’s drawings and sketches were brought to life through animation, and a 3minute film entitled It’s all in the mind was made. Eden saw her art move.

In articulating together the boundaries, culture, systems of art and the process of making projects with his daughter, it is clear that for Eden, art has installed a sense of achievement and worth- she also likes to write on her drawings and paintings, text that changes how the viewer may respond to the image.

Daughter, agent, and catalyst.

 

 

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Panel 10: Media and End of Life Care

Tuesday 6th September 2016

By Zoë Shacklock and Gaby Smith

  • Paul Sutton (University of Roehampton):
  • Helen Wheatley (University of Warwick): Signs of Care: Television Documentaries About Assisted Suicide and the Persistence of Television
  • Agnese Sile (University of Aberdeen): The Ethics of Care in Briony Campbell’s Photographic Essay The Dad Project

Takeaway points:

  • Importance of storytelling as a form of care – giving voice to others (particularly the dying)
  • Rhythms of life and dying can be mirrored and supported by mediated structures and forms
  • Listening to these narratives and participating in these mediated rhythms can be/encourage practices of self-care

There was not a dry eye in the house as Paul Sutton discussed his experience of caring for his wife, Antonella, after she was diagnosed with terminal cancer in 2012. Watching television together became a key part of his caregiving practice, both as a couple and individually. In particular, watching television created a shared space and a shared time, in which Paul and Antonella could share the ‘small pleasures’ of television. Paul and Antonella watched Frasier together, and the affective experience of re-viewing familiar, beloved serial programmes – waiting, intimacy, repetition, and memory – mirrored the patterns of palliative care. Paul concluded by discussing how he used television as self-care after Antonella’s death, returning to the rhythms of serial drama (in this case Battlestar Galactica) as a means of support through the grieving process.

In another highly moving paper, Helen Wheatley discussed the proliferation of television documentaries about assisted suicide in the last ten years. She suggested that the caring relationship in this documentaries transcended the people depicted in the programme – producers care for their subjects, practice self-care for themselves, and must also care for their audience. Wheatley highlighted particular moments in these programmes that work as gestures of care – the taking of consent, giving a voice to the dying, and the intimate image. Echoing Sutton’s discussion of self-care, Wheatley explains how the production teams behind these documentaries had to actively practice self-care themselves, attesting to the emotional toll of telling these stories. She concluded by arguing for television’s ongoing relevance as a medium of care in a post-broadcast era: television creates a space for working through social, moral and emotional issues surrounding death and dying, and so displays an attitude for care towards its audience.

Furthering the discussion of how a medium can embody practices of care, Agnese Sile talked to us about London-based photographer Briony Campbell’s The Dad Project, which documents her father’s final six months. She suggested that the photograph opens up a space for reflection and discussion about our understandings of illness, dying, and care. Drawing from Arthur Frank’s work, she argued that facilitating the telling and listening of stories is in itself a practice of care. Yet the relationship between narratives of death and endings is paradoxical – there seems to be an imminent, precise end, yet the stories always resist closure and continue to reverberate. This relationship is perfectly captured in the form of photography, which similarly plays with death and life, stillness and motion.

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Panel 9: Activism, Advocacy, and Care

Tuesday 6 September, 2016.

By Gaby Smith and Zoë Shacklock

  • Alexandra Endaltseva (Linkoping University, Sweden), ‘To care FOR and to care ABOUT: disability knowledge work and communication in the context of Russian MS society’
  • Sally Chivers (Trent University), ‘Not an activist? The puzzling place of advocacy in care advice’

Takeaways:

-Forms of advocacy, action and activism within contemporary global societies and local communities.

-Being a reluctant, everyday activist and addressing the role of media campaigns.

Alexandra Endaltseva presents today her preliminary results, and on a personal note mentions that she cares about this research very much. It is part of a larger current project that she is working on, that is also her own PhD research.

She describes her research as a journey- and in honing in on one part of her study, where she has been collecting her data within the STS field: the interdisciplinary relationship between communication and social movements and disability studies is vital. In looking at how the Russian Multiple Sclerosis Society (RuMSS), this work highlights the role of communication, but also the importance of action, speaking to how the body can be affected by this condition.

Under the category of care, she shares contextual knowledge and encourages this specific type of care activism. Through this, using some of the real, authentic conversations had with people- this research opens up a wholly honest dialogue, giving a voice to this area of study in order to improve lives, and inclusion. In each model (whether biomedical, or social), discourses of care become used a symbol. Referring to Bitzer (1992) there is the suggestion that imperfection may be marked by urgency, but this produces audience, or in other words, agents of change. Thus overall, leading to possible action.

Activism in the knowledge about one’s one body and an action based on personal experience, speak to the critical realist approach to disability that Alexandra discusses within her research on the ‘School of multiple sclerosis in Russia’. In the context of the knowledge of the body and one’s social rights, the School’s intent is to initiate the societal shift from bio-beaurocratic understanding of disability and disease to a bio-socio approach. In aiming to construct health, (a state that is ever-changing) the school’s main aims revolve around talking, sharing, and showing the different facets of care and living with MS.

Sally Chivers discusses the often ‘unsung hero’- the carer at home, and usually ‘the good girl’ role taken on by many women from all corners. Drawing from various forms of C21st ‘advice literature’, Sally argues that even when the advice is useful- it can be damaging. She highlights this in the texts Mindful Caregiver and 36h Day, which draws together aspects of neoliberal rhetoric, yet also conveys the character of ‘the good girl’ caregiver through blame, guilt, and other systemic struggles faced.

The pamphlets, videos, and guidebooks that do address the need for care position the moral responsibility and usually place this type of care on the female household member. By not addressing the systemic issues of institutional care, which are often aggravated by austerity, Chivers places this in a Canadian context, highlighting the Ontario situation. The ‘Put Ontario Patients First‘ campaign which, is argued to capitalise on a general public fear of caring for an ageing population, featured white, middle-aged, middle-class women who in fighting for healthcare and appropriate state help stated that they were not activists, but dubbed themselves as healthcare quarterbacks for their entire families.

Thinking through the trajectory of the good activist and in the discussion of how and why austerity depends on ableism, the issues emerge that place a depoliticisation of care at the centre of becoming an everyday reluctant activist. The paper touches on Evelyn Nakano Glenn observation in that, ‘paid caring has not been included in the modernisation of labour relations.’ Both paid and unpaid care work become an issue of a particular type of ableism, often depending on the individual, the work that must be done, but also the way in which media plays a role in the conversation around care advocacy.

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Panel 8: Media, Care, and Conflict

Tuesday 6th September

By Zoë Shacklock and Gaby Smith

  • Marie Allitt (University of York): ‘Whom We Fear to Touch’: Medical Violence and the Conflict of Medical Care in Military-Caregiving Narratives
  • Hannah Tweed (University of Glasgow): Writing Care and Nursing in the First World War
  • Robert Hemmings (University of Leeds): Performances of Care: Film Shell-Shock and Spectatorship

Takeaway points:

  • Discursive accounts of wartime caregiving often reveal a tension between healing and violence, and between passivity and agency
  • Important to reflect on how historical accounts of care are presented to us, interrogating who has the authority to speak
  • The affective/performative experience of wartime caregiving is crucial to understanding military-medical systems

Most of us expect that the violence of war ends at the threshold of the medical tent, drawing a sharp distinction between spaces of war and spaces of care. Marie Allitt issued a challenge to this belief, arguing that the frontline military-medical space is complicit in the violence of war. First hand accounts from war are marked by the tension between care and cruelty, pain healing, and safety and violence. Allitt traced the ways in which the language of war persists in the language of caregiving – nurses ‘combat’ against death, doctors ‘dig’ and ‘plunge’ into skin. WWI caregivers were highly ambivalent about the role, in which care seemed to be more a form of intrusion into passive subjects than a therapeutic form of healing.

Sharing a focus on care in firsthand accounts of WWI, Hannah Tweed discussed the writing of WWI nurses, who have too long been neglected in favour of the physician-writer and the soldier-poet. Tweed analysed the diaries of Alice Lighthall, who (along with her contemporary Clare Gass), used multi-year diaries with entries for multiple years on the one page. This gives Lighthall the opportunity to reflect on past events as she writes, turning her diary into a contemporary historiography of care and conflict in WWI. While the diary entries are often highly factual in tone, affective reflections on care-giving emerge in the paratextual material (such as annotations and sketches), which are lost in published versions. Tweed concluded by arguing for the importance of researching these ‘medical paratexts’, particularly when working with issues of ethics and authority in the medical humanities

Shifting the discussion from written language to film, Robert Hemming introduced the audience to Arthur Hurst’s film War Neuroses, filmed in hospitals at the end of WWI. Hurst treated soldiers with movement disorders, and the film was produced as a supplement to his clinical lectures, presented as evidence of the success of his treatment. Yet Hurst’s film tells us more about the performative regimes surrounding caregiving than about any practice of care. He believed that these disorders arose because the body had been imitatively shaped by warfare, and so could be shaped back through the performance of normality. The environment in which these performances took place were also performances in themselves: Hurst created bucolic country environments for his patients, and caregivers were also required to perform optimism, affectively shaping the environment in which body shaping could occur. Unsurprisingly, patients’ improvement did not persist once they left these spaces. Hemming concluded by reflecting on the enduring political and ethical relevance of the film, suggesting that it invites us to think about the ethics of spectatorship, and how we participate in particular performative truths of war and care.

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Panel 7: Disability and Care

Tuesday 6 September, 2016.

By Gaby Smith and Zoë Shacklock.

  • Amelia Defalco (Leeds), ‘Dismantling the autonomy myth: dependency, comics and care’
  • Arianna Introna (Stirling), ‘Imagining disability and/in the Nation: narratives of care and cure in post-devolutionary Scottish writing’
  • Helen Hughes (Surrey), ‘Looking back at Mapping Perception’ (Skype)

 

Takeaways:

-Discourses of care that are exampled within the graphic memoir, literature and experimental film.

-How care is fundamental to survival but also to identity?- thinking through the human condition, as well as political and ‘national ableism’.

-The experimental and creative process harnessed to display/ illustrate care and how film is able to harness image and sound to create illusion.

Amelia Defalco discusses how the theorisation of care is integral to the theorisation of ageing. She speaks of how literature can illuminate, but often complicate the issues of care and the ageing person. In highlighting the graphic memoir as a particular case study, Defalco argues that these texts expose a disillusion of disembodiment and draw attention to the fundamentals of care. In informing the ethics of care within philosophy, life writing and the comic, this paper presents the ways in which care is fundamental to survival but also identity. Defalco comments on the illusion of self-determination, highlighting Rosemary Garland’s notion of the ‘extraordinary body.’

Graphic memoirs, she notes, repeatedly draw attention to this fragility, but combine the use of words and images to show the conditions of the human, which are paramount to the genre. It has the potential to embody this vulnerability and depict the narrative of care without privileging the care-giver, or care-receiver.

Using Special Exits (Farmer), the book includes many scenes of the tiring minutiae of daily care. The images too, convey the pleasures of care, showing expression, delight and moments of satisfaction of the character. Additionally, Tangles: A Story about Alzheimer’s My Mother and Me (Sarah Levitt) depicts care that shows a quick oscillation that represents multiple feelings toward care- from happiness, to disgust.

Arianna Introna discusses her wider Ph.D research on Scottish cultural studies, the narratives of care and cure in post-devolutionary Scottish writing. These critical approaches start with concerns with issues of Scotland’s ‘impossible futures’ in addition to certain social political realities. In concentrating on representations of human beings, reproduction and also as outlined by Kittay as dependency work, this analysis is a discussion of texts that speak to the idea of narratives of ‘new politics’, within Scottish society.

Utilising Our Fathers (O’Hagan), You Have to Be Careful in the Land of the Free (Kelman), Hotel World (Smith) and Paradise (Kennedy), these novels are critical in illustrating a double concern with the body- as incapacitated, interdependent and placed within alternative communities of care.

Helen Hughes joins the panel from Surrey, via Skype to discuss Mapping Perception (Andrew Kötting, 2002). An outcome of the collaborative arts project, this film is an experimental documentary, taking place over four years and as Hughes identifies it is both rich in historical source material and innovative for its time. Situating this at the turn of the new millennium, Kötting uses a number of ‘documentary ingredients’ to screen what it is like growing up with a disability. The teenager Eden, (Kötting’s own daughter) presents the film, who at a younger age discovers that she has been diagnosed with a neurological disability.

Through the expert use of using film, to show aspects of caregiving- this film is a creative response to the socialness of dis/ability.

Referencing Michael Schillmeier (2010) in this paper, who writes about the process of the nature of caregiving, which in itself emerges as back and forth, is placed alongside critical approaches to the film. The story of growing up is shown through the homemovie- telling the truth, whilst constructing a small history of the individual at the heart of the film, and the central role that Eden plays.

The film shows how Eden is a starting point and catalyst (as mentioned by Andrew Kötting in the film’s notes)- she performs herself, whilst associating this with a meta-cognitive awareness, that can enhance learning. In locating the images of Eden, she regards these images of herself during childhood but also through the making of the film. As an experiment of camera work, editing and creating illusion- Mapping Perception is an example of how to film the human subject, observations of the brain which can be accompanied by science, language and communication. The film as an experimental art form expresses a state of consciousness whilst also playing with the scientific processes of image making and scientific research such MRI scans.

 

 

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