Havi Carel suggested that to ‘fully understand illness it also has to be studied as a lived experience … [in its] existential, ethical and social dimensions’. This paper focuses on empirical work with those with Möbius syndrome on face perception and its implications, on their resilience and on their first person experiences. Möbius is characterized by the congenital absence of movements of the facial muscles; people with the condition cannot shut their eyes or mouths, or make facial expressions. Some also have reduced emotional experience as children. Fortunately, most do develop embodied emotional expression (through gesture and prosody, etc.) and learn that, by sharing these with others, they can also develop emotional experience within themselves. The mutual exchanges of embodied expression may facilitate and reinforce emotional experience.

Havi Carel 建议“要充分了解疾病，还必须将其作为一种生活体验来研究……[在其存在、伦理和社会方面”。本文侧重于与莫比乌斯综合征患者在面部感知及其影响、他们的复原力和第一人称体验方面的实证研究。莫比乌斯的特点是面部肌肉先天缺乏运动；患有这种疾病的人不能闭上眼睛或嘴巴，也不能做出面部表情。有些人小时候的情感体验也有所减少。幸运的是，大多数人确实发展了具体的情感表达（通过手势和韵律等），并了解到，通过与他人分享这些，他们也可以发展自己的情感体验。具身表达的相互交流可以促进和加强情感体验。