När något blir annorlunda : skötsamhet och funktionsförmåga i berättelser om poliosjukdom
Sammanfattning: When something is different: respectability and bodily ability in stories about polio In this thesis I study the relationship between people’s stories about polio and norms concerning respectability and ability. The purpose is to examine sense-making processes surrounding polio disease. This is done by studying how the ”normality” and ”deviation” is produced and negotiated in individual stories about health and disease. The theoretical basis of the study is a post-structuralist approach to the relationship between ”reality” and its representations. Further theoretical inspiration is found in cultural understanding of disease and disability, according to which there are more than biological aspects to consider when studying these concepts. This critical understanding is deepened through theoretical inspiration from amongst others Rosemarie Garland Thomson, who has shown that disability should be seen as an attribution of physical difference rather than something a body is. Garland-Thomson’s term ”the Normate” is used as a word for the ideal and ”normal”. A total of 749 individual written accounts of polio is analysed. The material consists of 576 answered questionnaires created on the initiative of The National Organisation of The Crippled (De Vanföras Riksorganisation) in the years 1946-48 and of 173 life stories created on the initiative of The Nordic Museum (Nordiska museet) around the years 1993-96. During the early 1900s, Public Health became a watchword in Sweden. Physical and mental health was seen the ideological path towards the new, sought-after society and health was linked to the concept of a modern Sweden. To be healthy enough to be able to support oneself and one’s family became a social necessity. In the industrial and nationalistically tinged Swedish society, disease and death became an attack on the very body of the society and the nation. The idea that the individual was responsible for reaching the desired societal development linked health to ”good character”. Polio was a disease that could leave individuals unable to work – a considerable problem in a country such as Sweden where there was a shortage of workers during the decades when polio was most prevalent. Given that the Swedish government was at this time also taking increasing responsibility for individuals, the disease was not only an economic catastrophe for those who became infected and might never take paid work again, but it was also a socio-economic problem. Polio was therefore problematic on several levels. The national economy was threatened, but so was the national identity of an orderly, healthy and prosperous Sweden. For the individual, their health, life and ability to support themselves were threatened, and the disease made it clear that a healthy and respectable lifestyle did not provide protection against illness and death. Through the study, it becomes apparent that the Normate is an ideal that the respondents relate to in several different ways. For example, it seems to have been important for the respondents to describe themselves as physically perfect individuals before the illness. This pattern of physical ability is a backcloth against which the consequences of polio can be seen. Stories of physical ability from before the disease make the consequences of for example paralysis more obvious. It is this ”normality” that allows the change caused by the disease in the respondents’ lives to emerge. The study shows that the sense-making that emerges in the materials is characterised by a dynamism and breadth, but also that the statements on an overall level relate to norms about physical ability and good character. Thus the predominant result of the study is how the Normate is created and validated in the respondents’ stories. Another result is the challenge of the Normate that occurs in the stories. The thesis contributes with new knowledge regarding constructions of ”normality” and ”difference” and regarding relationships between these categories.
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