In between silence and re-describing matters of care: An attempt at ethnography of cognitive dis/ability

HRADCOVÁ DANA, Michal SYNEK, Dita JAHODOVÁ and Radek CARBOCH. In between silence and re-describing matters of care: An attempt at ethnography of cognitive dis/ability. In EASST Conference 2018, Lancaster, UK. 2018.

Basic information

• Original name: In between silence and re-describing matters of care: An attempt at ethnography of cognitive dis/ability
• Name in Czech: Mezi tichem a záležitostmi péče: Pokus o etnografii kognitivní disability
• Name (in English): In between silence and re-describing matters of care: An attempt at ethnography of cognitive dis/ability
• Authors: HRADCOVÁ DANA, Michal SYNEK, Dita JAHODOVÁ and Radek CARBOCH.
• Edition: EASST Conference 2018, Lancaster, UK, 2018.

Other information

• Type of outcome: Presentations at conferences
• Confidentiality degree: is not subject to a state or trade secret
• Keywords (in Czech): kritické gesto, záležitosti péče, kognitivní disabilita
• Keywords in English: critical gesture, matters of care, cognitive disability
• Tags: International impact

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 patterns capturing the idiosyncratic dignity of multiple ways of living with dementia. In ensuing consultations, we have realized that while our texts 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 narratives unduly non-problematic and happy impression. What was missing in the networks and panoramas described, and what was redundant? What's to be deconstructed and what's to be composed? And how and with whom do we find out? 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 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 re-describing critical matters of care.

Abstract (in English)

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 patterns capturing the idiosyncratic dignity of multiple ways of living with dementia. In ensuing consultations, we have realized that while our texts 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 narratives unduly non-problematic and happy impression. What was missing in the networks and panoramas described, and what was redundant? What's to be deconstructed and what's to be composed? And how and with whom do we find out? 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 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 re-describing critical matters of care.