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:本经验报告从亲历者视角反思了对恐音症的研究。恐音症是对日常声响(咀嚼声、吸鼻声、按笔声)以及许多患者所关联的视觉线索(视动敏感症)的厌恶反应。该症状在临床和社会层面均未得到充分认知,恐音症患者常遭质疑,并生活在将感官环境本身转化为反复性痛苦的平台界面中(自动播放音频、算法驱动ASMR、镜头前常态化的进食行为)。本报告基于对16名恐音症患者半结构化访谈的既往定性研究的重读,融入了我的亲身经历及我在soQuiet恐音症研究网络中的角色。我从两个方向拓展了创伤知情设计(TID)对话:首先,TID必须将被身体感受的、具争议性的状态视为感官伤害与认知伤害的双重来源——由视听界面及对用户身体体验的持续否认所造成的长期创伤;其次,参与者所依赖的封闭社群与受管控的subreddit板块中,少数版主对谁的经验值得被倾听的决策可能复制这种否认。最后,我提出了对ASSETS会议的启示。