http://www.tandfonline.com/doi/abs/10.1080/09687599.2016.1181048
Disablism in the lives of people living with a chronic illness in England and Portugal
Ana Bê
Faculty of Education, Centre for Culture and Disability Studies, Liverpool Hope University, Hope Park, Liverpool, UK
ABSTRACT This article is based on research about the daily lives of people living with chronic illnesses in England and Portugal. Through the first-person narratives of participants, I argue that the lives of people living with debilitating chronic illnesses are affected by disablism, discrimination and exclusion. These aspects affect them in several important realms of life such as lack of or poor social support, difficulties in obtaining reasonable adjustments or the inability to obtain any kind of state support at all. These aspects are also widespread and compound and greatly influence their lives, beyond or in addition to the physical experience of the illness itself. I conclude that it is fundamental to change these structural and policy aspects and that people should have access to what I have termed a paradigm of sustained well-being, despite the illness.
Points of interest
• People who live with chronic illnesses such as fibromyalgia and multiple sclerosis can experience many difficulties in their lives that go beyond the symptoms they feel in their bodies, and this is illustrated by several stories from people who live with these illnesses.
• These complications can be different from country to country and they depend on the kind of help that is available in the form of social benefits (or lack thereof) or whether the law offers people some or little protection.
• These external factors have a great influence in people’s lives and well-being, and should be looked at in a serious way because they can make the difference between someone experiencing very difficult situations (such as having no job, no help and