Engaging with Motor Neurone Disease

Abstract

Attention to how people engage with biomedical research has increased over the past two decades. A combination of funding mechanisms, activism and policy reports have demonstrated that engaging with those affected by conditions is important for research. Across policy and academic literature, engaging particular groups within research has been considered potentially advantageous in improving the quality and direction of work. Engagements can also ensure that research is accountable. Additionally, those affected by potential clinical outputs are often considered to have a right to be included in conversations about research for which they are potential beneficiaries. This thesis explores the spaces, places, bodies, affects and emotions that determine practices of biomedical research engagements in the context of Motor Neurone Disease (MND). To do this, I use interviews and observations to explore how experiences are shaped and situated. By connecting geography, science studies, disability and applied health research, the project brings together debates around spaces and bodies. It illustrates how spaces of science (engagements) do not always accommodate particular bodies, and why these matter. I go on to suggest that a geographical agenda for embodied engagements might be useful for others seeking to take a spatially and emotionally attentive approach to engagements.

This project assembles the components that come together to make engagements and sometimes, to undo them. Informed by the perspectives of those affected by MND, it traces how encounters within engagements are made up of different connections and embodied interactions. Tracing how engagements are built up through relationships with spatial encounters, I explore how they can be thought about with Deleuzian processes of territorialization, deterritorialization and reterritorialization. In doing this, I suggest there are fluid and dynamic ways of framing engagements. In turn, I come to see engagements as spatial, embodied, and always changing.