The Invisible Smile

We are defined by our faces. They give identity, but, equally important, reveal our moods and emotions through facial expression. So what happens when the face cannot move? This book is about people who live with Möbius Syndrome, which has as its main feature an absence of movement of the muscles of facial expression from birth.

People with Möbius 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 Möbius a voice, allowing children and adults with the condition to explain what it is like. These fascinating biographies reveal much about the relation 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 Möbius construct their lives and how they come to terms with and express their identities with, and yet, beyond their faces. Some with Möbius have been thought to have learning difficulties and autism, since an impassive immobile face has been assumed to reflect inner cognitive problems. This book criticizes 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 Möbius can have as children and young adults and the journeys they go on as they realize 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 Möbius, The Invisible Smile provides an authentic, personal and moving account of this disorder.

About the Author:
Jonathan Cole (MA, MSc, DM, FRCP) was educated at Brasenose College, Oxford and The Middlesex Hospital and while there did his medical elective in New York with Oliver Sacks. He completed his training in London before returning to Oxford and then Southampton to do research. He now is a consultant in clinical neurophysiology and an academic, with over 70 papers and 200 publications in the control of movement without sensory feedback, affective or emotional touch and in chronic pain. He also believes that one must understand chronic impairment from a subjective, first person account and has published a series of books, on sensory loss, facial visible difference and spinal cord injury, exploring the first person experience of these conditions. He also collaborates with philosophers and choreographers on the consequences of his work for notions of embodiment and affective movement/position sense.
Henrietta Spalding (BA Hons) read Russian and American Studies at Keele University graduating in 1992. She spent 12 years working in education both in the UK and abroad. She has taught a wide variety of nationalities and ages of students from 5 year old upwards and including business teaching and Higher Education. Whilst living abroad she helped set up a support group for individuals and their families with Moebius Syndrome. On returning to the UK, five years ago, she became involved in the national charity, Changing Faces, which supports and represents individuals with disfigurements. She now heads their Professionals' Programme working to ensure every health clinic, school and workplace in the country is informed, skilled and able to address the psycho-social needs of people with disfigurements. She also lives with Moebius Syndrome herself.