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Voyage to the Inside of the Shadow: Women, Disability, Chronic Illness and Invisibility in an Ableist Society
Ana B Pereira, Faculty of Economics/Centre for Social Studies, University of Coimbra, Portugal
This paper intends to explore three case studies of women with chronic illness in Portugal. It also intends to showcase some conclusions of the research I did with chronically ill people in Portugal, as part of my MA dissertation in Sociology. It will be framed by a strong disability studies perspective as well as by what Rosemary Garland-Thomson has called "feminist disability studies". Some perspectives from sociology, namely the sociology of the body, will also be relevant and I will argue, in agreement with Carol Thomas, for the need of a greater interaction between disability studies and sociological perspectives.
Through these particular women's life stories, I wish to explore some of the ways that people with chronic illnesses are socially excluded, discriminated against and actively disabled by society. Unlike other approaches, I will therefore focus more on the social exclusion and interactions than on the experiential part of the illnesses, although I will also focus on what Carol Thomas has defined has the "psycho-emotional dimensions of disablism". Women with Multiple Sclerosis (MS) and fibromyalgia/Chronic Fatigue Syndrome/ Myalgic Encephalopathy (ME/CFS) were chosen. I focus on four main areas of their lives: work, family and friends, biomedicine and leisure. Particular attention will be given in this paper to these women's distressing interactions with biomedicine. I will therefore question biomedicine's supposed neutrality and objectivity when dealing with some of these women and explore the intersections of gender and class as major factors related to biomedicine's sometimes biased responses to these women. The analyses of these women's stories allows me to draw some conclusions namely regarding the fact that their lives seem to be much more affected by society's inability to take their impairments into consideration than by the nature of their impairments per se. The fact that their impairments are often "invisible" seems to extend to the rest of these women's lives as a sort of metaphor, not only because of the nature of their impairments but also due to the fact that their needs and political demands still have little visibility - it is as if chronically ill people live constantly in the shadow. Drawing from these women's experiences, I conclude also that society, at its several levels, from the family to the workplace, seems to have a hard time dealing with people who are hard to categorize as either "sick" or "functional", since they are a bit of both. I therefore argue that chronically ill people are disruptive to the social order as they question fixed categories and require specific responses. In that regard, they are extremely relevant to the disabled people's movement as they also question a lot of the premises that people who consider themselves non-disabled sometimes have about disabled people.
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