CiNii 図書 - The invisible smile : living without facial expression

We are defined by our faces. They give identity but, equally importantly, reveal our moods and emotions through facial expression. So what happens when the face cannot move? This book is about people who live with Moebius Syndrome, which has as its main feature an absence of movement of the muscles of facial expression from birth. People with Moebius cannot smile, frown, or look surprised or sad. Talking and eating are problematic, since their lips do not move. Even looking around is also difficult since the eyes cannot move either. The book is unique in giving those with Moebius a voice, allowing children and adults with the condition to explain what it is like. These fascinating biographies reveal much about the relations between face and facial expression, and emotional expression and emotional experience which we normally take for granted. The narratives also show the creative ways in which those with Moebius construct their lives and how they come to terms with and express their identities with, and yet, beyond their faces. Some with Moebius have been thought to have learning difficulties and autism, since an impassive immobile face has been assumed to reflect inner cognitive problems. This book criticises such work and asks people to look not only at the face but beyond it to see the person. Throughout the book, several themes emerge, of which perhaps the most surprising is the reduced emotional experience those with Moebius can have as children and young adults and the journeys they go on as they realise this and then assimilate emotion from the outside in. The result of a 4 year collaboration between a clinician/neuroscientist and a teacher/lobbyist who lives with Moebius, 'The Invisible Smile' provides an authentic, personal, and moving account of this disorder.

1. Introduction
2. Somebody home
3. Balancing acts
4. Cartesian children
5. Part of me
6. The spectator
7. Elastic between us
8. Hear my smile
9. 'Doomed to express'
10. Changing of the rules
11. Every second of the day
12. Not about anything
13. Rusty old car
14. The last why

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The invisible smile : living without facial expression

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