Department of Culture Studies, Tilburg School of Humanities and Digital Sciences, Tilburg University, the Netherlands.
Soc Sci Med. 2023 Jun;327:115951. doi: 10.1016/j.socscimed.2023.115951. Epub 2023 May 7.
Contested illnesses, such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic Lyme disease (CLD), are surrounded by polemic debates regarding their etiology, symptomology, treatment, and even their existence. People who suffer from these contested illnesses arguably also suffer from "epistemic injustice." This concept, coined by the philosopher Miranda Fricker, captures how people's knowledge may be discredited because of identity prejudices. In our paper, this concept is used to understand how seven Dutch women with contested illnesses experience the emancipatory potential of their vlogging practices. Our findings show how these women understood their vlogging as a means to break with epistemic smothering, understood as the propensity to cater ones testimony to one's audience (Dotson, 2011), and as a means to attain and enhance epistemic justice. However, our findings also show how vlogging about contested illnesses did not seem to allow these women to fully break with their epistemic smothering practices, and that the ableist design and gendered norms of YouTube were experienced as obstacles to attaining epistemic justice. We conclude that, even though social media do seem to hold emancipatory potential for these women, the experiences of individual users are diverse and ambiguous.
争议性疾病，如纤维肌痛、肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）和慢性莱姆病（CLD），其病因、症状、治疗方法甚至是否存在都存在争议。可以说，患有这些争议性疾病的人也患有“知识不公”。哲学家米兰达·弗里克创造了这个概念，用来描述人们的知识可能因身份偏见而受到质疑。在我们的论文中，这个概念被用来理解七位患有争议性疾病的荷兰女性如何体验她们的视频博客实践的解放潜力。我们的研究结果表明，这些女性如何将视频博客理解为打破知识窒息的一种手段，知识窒息是指倾向于迎合受众的证词（多森，2011），以及获得和增强知识公正的一种手段。然而，我们的研究结果也表明，关于争议性疾病的视频博客似乎并没有让这些女性完全摆脱知识窒息的做法，而 YouTube 的残疾歧视设计和性别规范被认为是获得知识公正的障碍。我们的结论是，尽管社交媒体似乎对这些女性具有解放潜力，但个体用户的体验是多样和模糊的。
