I skärningspunkten mellan kropp och samhälle – Multipel skleros och funktionshinder

Abstract

The overall aim of this thesis is to investigate and analyze disability as a social problem concerning lack of social inclusion, in relation to persons with multiple sclerosis (MS). Study I of the thesis is a scoping review including a total of 96 articles, with most focusing on employment discrimination. Other areas examined included welfare and social services, transportation, home and public space accessibility, healthcare, and negative societal attitudes. Several knowledge gaps were identified. Study II examined the use of formal help, specifically personal assistance and home help. These forms of help were analyzed as binary variables using logistic regression. The strongest association with both forms of formal help was found in relation to an EDSS (Expanded Disability Status Scale in Multiple Sclerosis) score between 6–9.5, indicating a higher degree of impairment. The most notable difference was that personal assistance users were mainly affected by visible symptoms, while users of home help were mainly affected by invisible symptoms. Study III focused on the use of informal help among persons with MS, using two dependent variables: whether informal help was used and the number of hours of informal help used per week. The former was analyzed using binary logistic regression, and the latter using linear regression. Three variables and outcomes were associated with both the use of informal help and the number of hours of informal help used per week: being born outside the Nordic countries, receiving sickness benefits, and an EDSS score between 6–9.5. Study IV is a qualitative investigation based on semi-structured individual interviews. The analysis was theoretically driven, using a critical realist framework, and reference groups were involved in the initial phase of the analysis. The empirical material was coded into the following themes: disabling symptoms; social measures in relation to symptoms; disability as a consequence of interaction with other people; disability as a consequence of societal factors; and disability as a consequence of a combination of social interaction and societal structuring. This thesis shows that disability and MS constitute a complex phenomenon. It is argued that disability arises from interactions between the body and society, and that such interactions can be contextual and situational. In line with previous research, the studies investigating the use of formal and informal help indicate a de-universalization of the Swedish welfare system. A recurring theme of the thesis is the invisibility of many MS symptoms, such as fatigue or pain, meaning that persons with MS do not necessarily conform to stereotypical images of disabled persons. The impact of invisible symptoms have been overlooked in previous research. The present results indicate that persons with MS mainly affected by invisible symptoms were more likely to use home help rather than personal assistance, raising questions about how visibility influences access to different forms of help. Several accounts from persons with MS have illustrated how invisible symptoms—both for themselves and in interaction with other people and the social environment—were related to experiences of disability.