Silenced voices : narratives of polio and postpolio syndrome
The polio epidemics of the 1940s and 1950s are largely forgotten now, but thousands of people in the UK and millions worldwide who had polio are now reporting new deterioration. This is referred to as postpolio syndrome (PPS), about which the medical profession is often sceptical or ignorant. The thesis explores the experiences of long-term disability after childhood illness and recent contested symptoms in people who had polio as children or young adults. The study consisted of an initial survey of 170 people who had polio, concerning their polio history and recent PPS symptoms, followed by in-depth biographical interviews of 31 people who had varied severity of polio at different ages. Most of the people interviewed had recovered well after a lengthy rehabilitation and sometimes later surgery. The principal themes of the narratives encompass independence, forgetting polio, working hard, resisting discrimination, and achieving as much or more than other people. Within this dominant narrative are smaller stories of vulnerability and not being listened to as children a key theme being the general lack of understanding, and especially the lack of acknowledgement by the medical profession in relation to subjective symptoms such as fatigue and pain. Using analytical frameworks from medical sociology, medical anthropology, and disability studies, the thesis demonstrates the complex and paradoxical nature of narratives about long-term disability. These are narratives in which people live in a liminal world, both physically and socially, and attempt to find a balance between normality and difference.