Disabled people’s healthcare encounters
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This thesis is about impairment, disability and health. Placed in the context of Disability Studies, it engages with the theoretical debates about how disability and impairment should be conceived. In doing so it pays particular attention to the embodiment of impairment and its relation to health matters. It also identifies and discusses the reasons for the apparent reluctance of Disability Studies to engage with health issues. The main source of data is interviews with 28 disabled people from Edinburgh and the Lothians. Using semi structured interviews, participants were encouraged to talk about their experiences of using healthcare including the access barriers they faced, the expertise they developed to manage their health care encounters and how these encounters mediated and were mediated by their lived experience as disabled people. A secondary source of data is autoethnographic writing. Through reflexivity, an assessment is made of the value and validity of using this method to explicitly incorporate the researcher’s own experiences in to the data and its analysis. Similarly reflexivity is deployed to consider the methodological issues that arise from the researcher being disabled and encountering access barriers during the research process. There were three sets of findings from the research. First, participants’ body talk suggested that in everyday life impairment and maintaining good health can be understood as something which is done by the embodied self to the body. This doing is often a taken-for-granted activity. It is also mediated through a number of factors including emotions, disabling barriers and broader social and economic structures. Second, participants’ accounts of the access barriers they faced when using the NHS suggested that there are two categories of access needs, the macro and micro. While macro needs such as ramped or flat access to premises were anticipated and routinely met without participants having to take any action, participants often felt they had to take the initiative to ensure their micro needs, such as the need for a hoist, were met. Some micro access needs were particular to a healthcare context and often emerged during diagnostic tests or treatment procedures. Healthcare professionals had to have sufficient skills and confidence to respond effectively to these clinical micro needs. The third set of findings was that some participants developed expertise to enable them to access the appropriate services to meet their needs and form a high quality relationship with healthcare professionals. However, other participants recalled situations where their expertise was not respected and felt abandoned by the NHS. The first set of findings has implications for theoretical development in Disability Studies. More work is needed to connect the doing of impairment to theoretical approaches found in sociology of the body and to empirically explore the nature and scope of impairment doing, The second and third set of findings have implications for current healthcare practice particularly in the context of the NHS’ responsibility under the Disability Discrimination Act.