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In between silence and matters of care: Ethnography of cognitive dis/ability

Publication |
2018

Abstract

As a group of researchers with different backgrounds - STS, ethics, gender and disability studies - and working with different partners, we drew up stories capturing the idiosyncratic dignity of living and dying with dementia. While engaging with people living with dementia and those who care for them at home, in community health centre, or in community mental health services, we encountered multiple ways of staying (together) with trouble.

In our ethnographic work, we have followed the actors and tried to make sure that all our partners have an opportunity to speak for themselves. Nevertheless, the critical reading of the little narratives we had drawn up led us to the question whether the locally built strategies of living with dementia - then our matter of concern - plus our methodology, grounded in ANT, hadn't given our stories unduly non-problematic and positive impression.

In ensuing consultations, we have realized that while we were able to acknowledge the complexity of caring efforts dedicated to maintaining good life, the moments when actions and accounts of people diagnosed with dementia were displaced into the realm of the untranslatable, were not fully articulated. We are interested how are drwan the borders of the various fields of coherence from which some of the actors (identified as cognitively disabled) are being excluded.