People with Motor Neurone Disease lose speech, movement, and facial expression, but their inner streams of thought, reflection, and imagination remain fully intact—and this project will build new ways to let them share those internal worlds. This matters because MND affects 1 in 300 people, and current communication tools like eye-gaze technology are limited. Important thoughts, concerns, and experiences stay locked inside, deepening isolation and harming mental wellbeing. As people live longer with the disease, the need for interventions that improve quality of life becomes urgent. The project argues that internalised expression—storytelling, daydreaming, private reflection—is the most immediate resource people have for negotiating illness and redefining existence. If successful, Co-Creative MiND will establish a national hub that develops and tests new body-computer interfaces, creative tools, and communication technologies tailored to each person’s specific abilities and interests. The goal is to extend communicative capacity, enable social interaction, and allow people to share their inner lifeworlds. This would transform daily life for people with MND by reducing isolation and improving mental wellbeing, while also advancing ethnographic and medical understanding of how people live with profound physical constraint.
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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.
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