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

疾病会扰乱生活。对于那些患有长期疾病的人来说，这种干扰需要重新调整大脑和身体与日常生活的互动方式。然而，在西方医学的历史特权中，这种对疾病的具体化知识被忽视了，因为西方医学的认识方式以“临床凝视”(福柯，1973)和可视化技术(乔伊斯，2010)为中心，从而否定了病体作为知识中心的地位。这尤其影响了妇女，由于以男性为中心的医学研究和偏见，她们的症状正在被消除(Criado-Perez，2019年)。有必要解决基于性别的健康不平等问题，承认对了解疾病的具体贡献。这个研究项目以病态的身体为中心，作为思考和认知的中心，试图翻译女性对疾病的具体化知识，产生表征向生活经验的转变。Jean Luc Nancy(2008)呼吁对身体进行激进的翻译，“不是关于身体，而是身体本身”(p.9)。同样，这种以实践为基础的研究方法寻求通过实验方法将具体化的知识转化为纪录片，综合创造性实践、健康人文和社会科学的跨学科知识。在苏珊·科泽尔(Susan Kozel)(2013)方法论研究的基础上，《情感现象学》在这里被改编，以揭示疾病的现实，这些现实往往是主观的、隐藏的，并在身体内部感受到的。作为具体知识的翻译者，通过感官走向情感，这种方法论中使用了对节奏的关注。有节奏的焦点识别并突出了与患有长期疾病的苏格兰女性在感官人种志合作中出现的情感‘时刻’。具体地说，平克(2009)的感觉人种学“任务”方法被开发出来，使用制造过程来探索对疾病的感觉理解。精炼这种感官阅读，情感和对节奏的强调的现象学被用来辨别任务结果和发展具体化的隐喻，形成了纪录片调查的基础。马克斯(2018)的情感分析方法随后与合作者一起进行，以确定翻译的准确性。这一进程将产生五部相互关联的短纪录片。为了配合这些电影研究艺术品，我将撰写一篇书面论文和一系列电影散文，将纪录片的成果与背景联系起来。作为主要的合作者和受众，苏格兰18-55岁患有长期疾病的女性既提供了这项研究的公共影响，也体验了这项研究的公共影响。这一年龄段的女性经常因为“怀孕风险”而被排除在临床研究之外，当她们的疾病经历没有被“临床凝视”认识到时，她们可能面临健康不平等。在这里，合作研究和纪录片通过揭示具体知识的翻译来解决表征问题，否则可能很难清楚地表达出来。这项研究与苏格兰医疗保健组织合作，利用他们的社交媒体网络邀请女性在感觉人种学采访、创造性任务、概念开发和编辑过程中进行合作。为了解决纪录片形式中的权力失衡，对电影的情感分析也使合作者有机会确定翻译是否代表了他们的具体知识。利用项目贡献者的社交和研究网络，那些患有长期疾病的人，研究人员和苏格兰医疗机构将被邀请与合作者、他们的家人、朋友和照顾者一起公开放映这些电影。

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.