Insights from those who live with impairments of facial mobility

Abstract

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.