Jen Tarr

The thing about pain: The remaking of illness narratives in chronic pain expressions on social media:

In this article, we analyse chronic pain narratives on Flickr and Tumblr. We focus on how, by incorporating visual and multimodal elements, chronic pain expressions in social media significantly extend and challenge the logic, function and effects of traditional ‘illness narratives’. We examine a sample of images and blogs related to chronic pain and formulate a typology of chronic pain expressions on these sites. Flickr brings a form of narrative immediacy, making the pain experience visible, eliciting empathy and marking chronicity. Tumblr lends itself to more networked forms of interaction through the circulation of multimodal memes, and support communities are built through humour and social criticism. We argue that new forms of mediation and social media dynamics transform pain narratives. This has implications for our understandings of the forms and formats of pain communication and offers new possibilities for communicating pain within and beyond clinical contexts.

Too Much Information: Visual Research Ethics in the Age of Wearable Cameras

When everything you see is data, what ethical principles apply? This paper argues that first-person digital recording technologies challenge traditional institutional approaches to research ethics, but that this makes ethics governance more important, not less so. We review evolving ethical concerns across four fields: Visual ethics; ubiquitous computing; mobile health; and grey literature from applied or market research. Collectively, these bodies of literature identify new challenges to traditional notions of informed consent, anonymity, confidentiality, privacy, beneficence and maleficence. Challenges come from the ever-increasing power, breadth and multi-functional integration of recording technologies, and the ubiquity and normalization of their use by participants. Some authors argue that these evolving relationships mean that institutional ethics governance procedures are irrelevant or no longer apply. By contrast, we argue that the fundamental principles of research ethics frameworks have become even more important for the protection of research participants, and that institutional frameworks need to adapt to keep pace with the ever-increasing power of recording technologies and the consequent risks to privacy. We conclude with four recommendations for efforts to ensure that contemporary visual recording research is held appropriately accountable to ethical standards: (i) minimizing the detail, scope, integration and retention of captured data, and limiting its accessibility; (ii) formulating an approach to ethics that takes in both the ‘common rule’ approaches privileging anonymity and confidentiality together with principles of contextual judgement and consent as an ongoing process; (iii) developing stronger ethical regulation of research outside academia; (iv) engaging the public and research participants in the development of ethical guidelines.

On liveness: using arts workshops as a research method:

Drawing on a research project using arts workshops to explore pain communication, we develop a methodological reflection on the significance of the liveness of arts-based methods. We discuss how liveness informed the design of workshops to provoke novel forms of communication; how it produced uncontrollable and unpredictable workshops, whose unfolding we theorize as ‘imprography’. It also constituted affective and collective experiences of ‘being there’ as important but difficult-to-record parts of the data, which raises challenges to current understandings of what constitutes data, particularly in the context of team research and in light of directives for archiving and reuse. We explore the implications of liveness for methodological practice.

Beyond the binaries: Reshaping pain communication through arts workshops

Pain is difficult to communicate and translate into language, yet most social research on pain experience uses questionnaires and semi-structured interviews that rely on words. In addition to the mind/body dualism prevalent in pain medicine in these studies pain communication is characterised by further value-laden binaries such as real/unreal, visible/invisible, and psychological/physical. Starting from the position that research methods play a role in constituting their object, this article examines the potential of participatory arts workshops for developing different versions of pain communication. Twenty-two participants were involved in workshops using drawing, digital photography, sound and physical theatre to explore pain communication. The use of arts materials made pain tangible. By manipulating pain-related objects, participants could consider alternative relationships to their pain. Pains sociality was also explored, with relations with clinicians and others emerging as potentially cooperative rather than adversarial. Discussions considered whether pain felt internal or external, and whether it was possible to conceive of a self without pain. We argue that the socio-material context of participatory arts workshops enabled these alternative versions of pain. Such methods are a useful addition to medical sociologys heavy reliance on qualitative interviewing.

Painscapes and Method

A variety of recent work has challenged Elaine Scarry’s (1985) proclamation that pain is actively resistant to language. This chapter proposes that what pain resists is not language but method, insofar as this refers to a way of proceeding which is singular, linear and replicable. It briefly sketches the researcher’s own ways of navigating pain research: from a project that asked dancers to represent their pain and injuries on 3D body scans of themselves; to open-ended explorations of ways of representing pain using plasticine clay, line drawings and digital photographs; to recent work considering non-textual communications of pain in arts workshops and on social media. The chapter argues that pain communication fundamentally requires multiple approaches and ‘ways of travelling’ through painscapes.