Andrew Irving (University of Manchester) "Between Thought and Expression, Lies a Lifetime: The Inner Lifeworlds of Motor Neurone Disease"

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Abstract: “Between thought and expression” sang Lou Reed “lies a lifetime”: a lyric that evokes the strange distance between people’s internalised realms of being and their public expression in the wider social world. Perhaps, nowhere is this disjuncture more apparent than in terms of Motor Neurone Disease (MND), a neurodegenerative condition that progressively removes movement, motor control and speech until someone reaches the state of being “locked-in” and only retains limited communicative means, for example eye-gaze and blinking, micro-facial movement or breath. The experience of MND is often mediated by an intensely active inner lifeworld that encompasses everything from inner dialogue, fantasy, storytelling and image-making to thoughts of worthlessness, suicide and the negotiation of ongoing religious, moral and existential concerns. The question of how to research and represent the complexity and diversity of people’s inner lives is a methodological and practical problem rather than a conceptual one. Drawing on experimental and co-creative research, this week’s presentation attempts an ethnography of the inner lifeworld in order to consider the many different kinds of lives that are lived between thought and expression. Andrew Irving is Professor of Anthropology at the University of Manchester.