In between silence and formulating matters of care: An attempt at ethnography of cognitive dis/ability
Abstract
While engaging with people living with dementia - at home, in community services, in health care centre - we have encountered multiple ways of staying (together) with trouble. As a group of researchers with different backgrounds and working with different partners, we drew up little narratives capturing the idiosyncratic dignity of multiple patterns of living with dementia.
In ensuing consultations, we have realized that while our stories acknowledged the complexity of caring efforts dedicated to maintaining the coherence of living and dying, the moments when actions and accounts of people identified as disabled were displaced into the realm of the untranslatable by reference to their cognitive disability, were not convincingly articulated. The on-going reflection has led us to question whether our interest in the locally built patterns of coherence, as well as the grounding of the research in ANT and material semiotics, hasn't given our stories unduly non-problematic and happy impression.
Did the somewhat "poetic" and "baroque" aesthetics of the text concealed the "raw" everyday realities? In this paper, we respond to this challenge by exploring how - in care and in STS research - is the silence surrounding cognitive dis/ability created, maintained and dispelled. In addition to this shift from composition towards critique, we want to make the opposing move as well - we ask if it's possible to dispel the silence over the ruins of disabling discourses left after the attack of critique by co-formulating critical matters of care.