This experience report reflects on researching misophonia as someone who lives with it. Misophonia is an aversive response to everyday sounds (chewing, sniffling, pen clicking) and, for many of us, to associated visual cues (misokinesia). It is poorly recognized clinically and socially. People with misophonia are routinely disbelieved, and they live inside platform surfaces (auto-playing audio, algorithmic ASMR, normalized eating on camera) that turn the sensory environment itself into recurring distress. This report is a re-reading of a prior qualitative study of 16 semi-structured interviews with misophones, conducted in dialogue with my lived experience and my role in the soQuiet Misophonia Research Network. I extend the trauma-informed design (TID) conversation in two ways. First, TID must treat embodied, contested conditions as sources of both sensory and epistemic harm: ongoing trauma produced by the audiovisual surface and by repeated dismissal of users' accounts of their bodies. Second, the closed groups and moderated subreddits participants relied on can reproduce that dismissal when a few moderators decide whose experiences count. I close with implications for ASSETS.
翻译:本经验报告以亲历者视角反思了对恐音症的研究。恐音症是一种对日常声音(咀嚼声、吸鼻声、按笔声)的厌恶反应,对许多人而言,还包括相关的视觉线索(运动错觉)。该病症在临床和社会中均认知不足。恐音症患者常常不被信任,他们生活在平台环境(自动播放音频、算法ASMR、镜头前常态化的进食行为)之中,这些环境将感官世界本身转化为反复出现的痛苦。本报告是对先前一项基于16名恐音症患者半结构化访谈的定性研究的重新解读,该访谈结合了我的亲身经历以及我在soQuiet恐音症研究网络中的角色。我从两个层面拓展了创伤知情设计(TID)的讨论:首先,TID必须将具身的、备受争议的病症视为感官伤害与认知伤害的双重来源——即由视听环境以及用户身体体验报告被反复驳回所造成的持续性创伤;其次,参与者依赖的封闭社群与受审核的Reddit子论坛,在少数版主决定哪些经历值得被认可时,可能复制这种排斥。最后,我阐述了该研究对ASSETS会议的启示。