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.

The Invisible Smile: Living without facial expression (International Perspectives in Philosophy and Psychiatry)

Health, Fitness & Dieting

Cole, Jonathan

Spalding, Henrietta

Psychology & Counseling

Oxford University Press

What is like to live without touch or movement/position sense (proprioception)? The only way to understand the importance of these senses, so familiar we cannot imagine their absence, is to ask someone in that position. Ian Waterman lost them below the neck over forty years ago, though pain and temperature perception and his peripheral movement nerves were unaffected. Without proprioceptive feedback and touch the movement brain was disabled. Completely unable to move, he felt disembodied and frightened. Then, slowly, he taught himself to dress, eat and walk by thinking about each movement and with visual supervision. In Losing Touch, the narrative moves between biography and scientific research, theatre, documentary and zero gravity. He has been married three times, and built up successful careers in disability access audit, using his impairment to his advantage, and in rare turkey breeding and journalism. The neuroscience has led to data on movement without feedback, the pleasantness of touch, gesture, pain and body orientation in space. The account shows how the science was actually done but also reveals Ian's journey from passive subject to informed critic of science and scientists and that the science has given him both more understanding but also greater confidence personally. His unique response to such a rare condition has also led to a BBC documentary, theatrical portrayals and a weightless flight with NASA. As a young man he sought triumph over his impairment; now, nearly 65, he has more mature reflections on living with such an extraordinary loss, the limits it has imposed and the opportunities it has enabled. He gives his views on scientists and on others he has met including Oliver Sacks and Peter Brook. In an Afterword those from science, the arts and philosophy give an appreciation of his contribution. The book is the result of nearly 30 years close collaboration between author and subject.

Losing Touch: A man without his body

Biographies & Memoirs

Social Stratification in Science

Politics & Social Sciences

Social Sciences

University of Chicago Press

A physician's account of how one patient came to terms with, and overcame, a rare, paralysing neurological illness.

Pride and a Daily Marathon

Medical Books

Bradfords Directory

Univ. of Southampton, U.K. Discusses the significance of the face and its expression. Draws on the disciplines of neurology, human development, anthropology, philosophy and the arts to explore the importance of the face in the development of emotion and communication. Presents case studies. For the lay reader.

About Face (Face Biology)

The MIT Press

In writing Still Lives, Jonathan Cole wanted to find out about living in a wheelchair, without having what he calls "the doctor/patient thing" intervene. He has done this by asking people with spinal cord injuries the simple question of what it is like to live without sensation and movement in the body. If the body has absented itself, where does the person reside? He describes his method in the first chapter: "I have gone to people, not with a white coat or a stethoscope...[but] to listen to their lives as they express them," and it is the candid and powerful narratives of twelve people with spinal cord injuries that form the heart of the book.Asking his simple question, Cole discovers that there is no single or simple answer. The twelve people with tetraplegia (known as quadriplegia in the US) or paraplegia whose stories he tells testify to similar impairments but widely differing experiences. Cole employs their individual responses to shape the book into six main sections: "Enduring," "Exploring," "Experimenting," "Observing," "Empowering," and, finally, "Continuing." Each concludes with a commentary on the broader issues raised. Still Lives moves from a view of impairment as tragedy to reveal the possibilities and richness of experience available to those living with spinal injuries. More universally, it offers new perspectives on our relation to our bodies. In exploring the creative and imaginative adjustments required to construct a "still life," it makes a plea for the able-bodied to adjust their view of this most profound of impairments.

Still Lives: Narratives of Spinal Cord Injury (Bradford Books)

Diseases & Physical Ailments

Bradford Books

What is special about the face, and what happens when neurological conditions make expression or comprehension of the face unavailable? Through a mix of science, autobiography, case studies, and speculation, Jonathan Cole shows the importance not only of facial expressions for communication among individuals but also of facial embodiment for our sense of self. He presents, in his words, "a natural history of the face and an unnatural history of those who live without it."
The heart of the book lies in the experiences of people with facial losses of various kinds. The case studies are of blind, autistic, and neurologically impaired persons; the most extreme case involves Mobius syndrome, in which individuals are born with a total inability to move their facial muscles and hence to make facial expressions. Cole suggests that it is only by studying such personal narratives of loss that we can understand facial function and something of what all our faces reflect.

About Face

Self-Help

Death & Grief

An examination, through personal narratives and reflective commentary, of life without sensation or movement in the body.
In writing Still Lives, Jonathan Cole wanted to find out about living in a wheelchair, without having what he calls "the doctor/patient thing" intervene. He has done this by asking people with spinal cord injuries the simple question of what it is like to live without sensation and movement in the body. If the body has absented itself, where does the person reside? He describes his method in the first chapter: "I have gone to people, not with a white coat or a stethoscope...[but] to listen to their lives as they express them," and it is the candid and powerful narratives of twelve people with spinal cord injuries that form the heart of the book.Asking his simple question, Cole discovers that there is no single or simple answer. The twelve people with tetraplegia (known as quadriplegia in the US) or paraplegia whose stories he tells testify to similar impairments but widely differing experiences. Cole employs their individual responses to shape the book into six main sections: "Enduring," "Exploring," "Experimenting," "Observing," "Empowering," and, finally, "Continuing." Each concludes with a commentary on the broader issues raised. Still Lives moves from a view of impairment as tragedy to reveal the possibilities and richness of experience available to those living with spinal injuries. More universally, it offers new perspectives on our relation to our bodies. In exploring the creative and imaginative adjustments required to construct a "still life," it makes a plea for the able-bodied to adjust their view of this most profound of impairments.

Still Lives: Narratives of Spinal Cord Injury (A Bradford Book)

Medicine

Reign of God, The: A Critical Engagement with Oliver O’Donovan’s Theology of Political Authority (T&T Clark Enquiries in Theological Ethics)

History

World

T&T Clark

Religion & Spirituality

Christian Books & Bibles

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Books by Cole, Jonathan