Social impacts on the lived experience of people with progressive neurological conditions

Abstract

Acquiring a progressive neurological condition is not part of the plan as one embarks on a life journey. The individual may experience difficulties related to movement, speech and cognition as the condition progresses with time. The experience of this life event is dependent on the relationship between the impairment, the social context and the social construction of disability within that context. Although, the experience of this life event is very highly researched from a medical perspective, the social aspect of this phenomenon appears to be underestimated. This study enquires about the lived experience of people with progressive neurological conditions from a social perspective. Therefore, the research questions adopted for this study were centered on identifying whether there are any societal impacts imposed on the individual, the standpoints that the individual takes and ultimately on gaining a deeper understanding of the social experiences of acquiring such conditions. In order to attain this understanding, a qualitative research approach was taken, under a conceptual framework based on an existential-hermeneutic phenomenology and along the principles of emancipatory disability research. Using interpretative phenomenological analysis (IPA) as the methodological framework, data was gathered by means of audio-recorded interviews with six individuals of any progressive neurological condition. The different experiences were marked by unique perspectives yet all seemed to be affected by the social attitudes which have shaped the participants' new life world. Some paradoxes relating to the participants' body image and political rights have also surfaced during the analysis of the data. Although some perceived the relationship with the non-disabled community positively, for others this relationship has only featured to be rather disabling. The findings also indicate how Maltese society still needs to embrace the disability experience as a different way of being-in-the-world.