“I don’t like standing still, I prefer to limp and go out.” Embodiment and (im)mobilities in the narratives of people with rare vascular anomalies

Abstract

The current study investigates embodiment and (im)mobilities in the narratives of people with rare vascular anomalies. Semi-structured interviews were conducted and sixteen participants were recruited. At the time of the interviews, my participants were not hospitalised. Macro mobility crossing regional or national borders, (im)mobility in daily lives and micro mobility within hospitals were the different scales of mobility covered in the interviews. People with rare diseases often encounter long journeys to obtain an exact diagnosis and effective treatment. Most of my interviewees experienced mobility to access necessary care, travelling mostly inter-regionally within Italy, but in some cases also abroad. When exploring (im)mobilities in daily lives, my participants discussed embodiment at the workplace, at the seaside and in doing sports. Memories related to previous hospital stays, hospital design and its impact on patients’ wellbeing were researched also to collect suggestions on evidence based healthcare design. Building on the findings of this study, hospitals can be defined as “interrelational spaces” since most of my participants described the environment in relation to medical staff and/or to other patients. The findings of this study seek to contribute to the body of knowledge on medical travel, on medical humanities and on embodiment and (im)mobilities.