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Mawrtyr05
01-09-2009, 02:07 PM
The Invisible Smile: Living without facial expression
by Jonathan Cole, Henrietta Spalding

Product Description
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 Mobius Syndrome, which has as its main feature an absence of movement of the muscles of facial expression from birth.
People with Mobius 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 Mobius 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 Mobius construct their lives and how they come to terms with and express their identities with, and yet, beyond their faces. Some with Mobius 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 Mobius 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 Mobius, The Invisible Smile provides an authentic, personal and moving account of this disorder.

Product Details

* Hardcover: 248 pages
* Publisher: Oxford University Press, USA; 1 edition (January 15, 2009)
* Language: English
* ISBN-10: 0198566395

I'm about half-way through, it's an interesting read even though I don't necessarily agree with some of the authors' conclusions and the concept of utilizing particular case studies to make generalizations about living with Moebius is potentially problematic.

Amazon link (http://www.amazon.com/Invisible-Smile-Living-without-expression/dp/0198566395/ref=sr_1_1?ie=UTF8&s=books&qid=1231527610&sr=1-1)

Tycho
01-19-2009, 12:18 AM
You will have to let us know your opinion after you finish. I will have to try to find a copy myself. What worries me about such a thing is...

A couple times I have been "interviewed" by someone who was going to write an article or some such thing on Moebius. Each time it seemed as though they had already made up their minds about what living with Moebius was like and simply wanted me to confirm what they had already decided. They weren't really listening to me because they already "knew."

Anyone else know what I mean?

amancalledalex
02-12-2009, 07:21 AM
I think that a lot of people are going to have a view on how it is to live with Moebius.....but by the same token I think that we as people with the condition can put them right about their facts and give them the truth.....yeh it's hard to live with Moebius but it's not the end of the world :)