Anthropology and Phenomenology of the Locked-in Syndrome

The overall goal of the prsent project is to understand how persons in LIS experience and view the self and others, to explore their sense of continuity and discontinuity of personal identity, as well as their views about the conditions and circumstances that make life valuable. This goal is pursued by way of two complementary qualitative research methodologies: the analysis of autobiographical narratives written and published by locked-in persons; questionnaires and interviews with patients, caregivers and family members. Both methodologies will be applied in Europe and in Japan, a country where LIS patients have published numerous first-person narratives, and whose similarities and differences with "Western nations" offer ideal conditions for intercultural comparison.

Since no similar investigation has ever been carried out, the present project contributes to fill a major scientific lacuna, and can be expected to impact on care and public policy. It will advance knowledge of LIS in academic and non-academic settings, as well as benefit patients, throw light on broader legal, ethical and philosophical issues currently debated at the societal level, and contribute to the in-depth analysis of such issues as the assessment of treatment costs, the role of advanced directives, and rights and obligations in the framework of chronic illness and end-of-life decisions.

"Anthropology and Phenomenology of the Locked-in Syndrome" is a multidisciplinary and international project involving a network of research groups, medical institutions, and associations, currently from Spain, France, Germany and Japan. It brings together scholars from the fields of illness narratives, medical anthropology, disability studies, phenomenology, biomedical ethics and the humanities, as well as professionals in neuropsychology and neurorehabilitation and managers and members of patients' associations.

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** The butterfly often associated with LIS derives from The Diving Bell and the Butterfly, Jean-Dominique Bauby's autobiographical narrative, where he writes as a locked-in person: ""My diving bell becomes less oppressive, and my mind takes flight like a butterfly."