Can a phenomenology of affect in experimental documentary practice translate women's embodied knowledge of long-term illness?

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Illness disrupts. For those with long-term illnesses, this disruption necessitates a recalibration of how the mind and body engage with everyday life. However, this embodied knowledge of illness has been neglected in Western medicine's historic privileging of ways of knowing that centre upon the 'clinical gaze' (Foucault, 1973) and technologies of visualisation (Joyce, 2010), thereby negating the ill body as a centre of knowledge. This has impacted women in particular, whose symptoms are being dismissed due to male-centred medical research and bias (Criado-Perez, 2019). There is a need to address gender-based health inequalities and acknowledge embodied contributions to understanding illness. Centring upon the ill body, as thinking and knowing, this research project seeks to translate women's embodied knowledge of illness, generating a shift in representation towards lived experience. Jean Luc Nancy (2008) called for radical translations of the body, "not about the body, but the body itself" (p.9). Similarly, this practice-based research methodology seeks to translate embodied knowledge through experimental approaches to documentary film, synthesising interdisciplinary knowledge from creative practice, health humanities and the social sciences. Expanding upon Susan Kozel's (2013) methodological research, 'a phenomenology of affect' is adapted here to reveal realities of illness that are often subjective, hidden and felt within the body. Moving through the senses towards affect as a translator of embodied knowledge, a focus on rhythm is used within this methodology. The rhythmic focus identifies and highlights affective 'moments' that emerge in sensory ethnographic collaborations with Scottish women experiencing long-term illness. Specifically, Pink's (2009) method of sensory ethnographic 'tasks' is developed, using processes of making to explore sensory understandings of illness. Refining this reading of the senses, a phenomenology of affect and emphasis on rhythm is used to discern task outcomes and develop embodied metaphors, forming the basis of the documentary enquiry. Marks' (2018) method of affective analysis is then carried out with collaborators to determine the accuracy of the translation. This process will result in the production of five interlinked, short documentaries. To accompany these filmic research artefacts, I will produce a written thesis and series of film essays contextualising the documentary outcomes. As the primary collaborators and audience, women in Scotland aged 18-55 living with long-term illness, both deliver and experience the public impact of this research. Often excluded from clinical research due to 'pregnancy risk', women in this age-group can face health inequalities when their illness experiences are unrecognised by the 'clinical gaze'. Here, collaborative research and documentary film address issues of representation by revealing translations of embodied knowledge that may otherwise be difficult to articulate. This research engages with Scottish healthcare organisations, using their social media networks to invite women to collaborate in sensory ethnographic interviews, creative tasks, concept development and editing processes. Seeking to address power imbalances within the documentary form, affective analysis of the films also enables collaborators the opportunity to determine whether the translation is representative of their embodied knowledge. Using the social and research networks of project contributors, those experiencing long-term illness, researchers and Scottish healthcare organisations will be invited to public screenings of the films, alongside collaborators, their family, friends and carers.