Co-Creative MiND: The Inner Lifeworlds of MND (360G-Wellcome-318032_Z_24_Z)

This multidisciplinary project will establish the world’s first ethnographic and participatory investigation into the interior lifeworlds of Motor Neurone Disease, combining medical-anthropology, computer-science, and co-creative practice. Affecting 1/300 people, MND encompasses the loss of speech, movement, and facial expression. Many people only have limited communicative means, e.g. eye-gaze technology. The substantial barriers between internalised consciousness and public expression means important thoughts, concerns and experiences remain unexpressed, exacerbating isolation, with profound psychosocial impacts. Increasing longevity indicates pressing need for life quality interventions. By necessity, MND comprises a rich, complex inner lifeworld, encompassing streams of thought, reflection, storytelling and imagination that constitute daily lived experience. We propose these vital forms of internalised expression are the most immediate and accessible means through which people can negotiate illness, redefine existence, and improve mental wellbeing. The project will enhance social-life, extend communicative capacity and enable people to share their internalised lifeworlds through Co- Creative-MiND: a national hub that will develop, test and advance new communicative technologies, body-computer interfaces and creative tools to facilitate social interaction, creative expression and investigative research, delivering advances in ethnographic and medical knowledge, demonstrating how life with MND can be transformed through co-creative practice aligned to people’s specific embodiments, temporalities, and interests.