Disability in the margins : handling uncertainty when seeking care in healthcare

• This paper explores how people with disabilities encounter and manage limits and uncertainty within the Swedish healthcare sector. Previous research has pointed out that individuals with different forms of disability often meet health-care professionals that lack knowledge about their specific conditions. These limitations have also been defined as a form of medical paternalism, where the professional's knowledge is emphasized over the patient’s knowledge. Within disability research, this displacement has been categorized as a medical model in contrast to a social model where the patient's body is not the focus, but rather the context in which the individual lives. This is a theoretical model that can be viewed through cultural analytical lenses to explore liminal healthcare practices. This paper addresses these questions based on interviews done with people who have lived with disabilities and their experiences of seeking care in the healthcare sector. What kind of embodied experiences of liminality do they have in relation to healthcare? How do they navigate health inequalities in relation to liminal spaces of healthcare? In what ways does this create uncertainties in everyday life for people living with disabilities? One of the findings in the interviews is that it is not only the professionals’ lack of knowledge that generates inequalities, but also the material infrastructure in, for example, the hospitals. Therefore, in this paper it will be suggested that the medical model from disability research should also be elaborated with cultural analytical perspective on material culture.

Ämnesord

HUMANIORA  -- Annan humaniora -- Etnologi (hsv//swe)

HUMANITIES  -- Other Humanities -- Ethnology (hsv//eng)

Nyckelord

Disability

Healthcare

Knowledge

Social model

Care

Hälsa och samhälle

Health and society

Publikations- och innehållstyp

vet (ämneskategori)

kon (ämneskategori)