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

疾病破坏。对于那些患有长期疾病的人来说，这种破坏需要重新调整身心与日常生活的关系。然而，这种体现的疾病知识在西方医学的历史特权中被忽视了，即以“临床凝视”为中心的认识方式（福柯，1973年）和可视化技术（乔伊斯，2010年），从而否定了患病身体作为知识中心的地位。这对妇女的影响尤其大，由于以男性为中心的医学研究和偏见，她们的症状被忽视了（Criado-Perez， 2019年）。有必要解决基于性别的保健不平等问题，并承认对了解疾病的具体贡献。以生病的身体为中心，作为思考和认识，这个研究项目试图翻译女性对疾病的具体知识，产生对生活经验的表达转变。Jean Luc Nancy（2008）呼吁对身体进行激进的翻译，“不是关于身体，而是关于身体本身”（第9页）。同样，这种基于实践的研究方法试图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、健康人文科学和社会科学的跨学科知识。在苏珊·科泽尔（Susan Kozel, 2013）的方法论研究的基础上，“情感现象学”在这里被改编为揭示疾病的现实，这些现实往往是主观的，隐藏的，并在体内感受到的。作为具身知识的译者，从感官走向情感，在这种方法中使用了对节奏的关注。节奏焦点识别并突出了与患有长期疾病的苏格兰妇女在感官民族志合作中出现的情感“时刻”。具体来说，Pink（2009）的感官民族志“任务”方法得到了发展，使用制作过程来探索对疾病的感官理解。精炼这种感官阅读，情感现象学和对节奏的强调被用来辨别任务结果和发展具体化的隐喻，形成文献调查的基础。然后与合作者一起执行Marks（2018）的情感分析方法，以确定翻译的准确性。这个过程将产生五个相互关联的短纪录片。为了配合这些电影研究文物，我将制作一篇书面论文和一系列将纪录片成果背景化的电影论文。作为主要的合作者和观众，年龄在18-55岁之间的苏格兰女性长期患有疾病，她们都提供并体验了这项研究的公共影响。由于“怀孕风险”，这一年龄组的妇女经常被排除在临床研究之外，当她们的疾病经历未被“临床关注”所承认时，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体现知识的翻译来解决代表性问题，否则这些问题可能难以表达。这项研究与苏格兰医疗机构合作，利用他们的社交媒体网络邀请女性在感官人种学访谈、创造性任务、概念发展和编辑过程中进行合作。为了解决纪录片形式中的权力不平衡，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所体现的知识。利用项目贡献者的社会和研究网络，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，朋友和照顾者一起观看电影的公开放映。

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.