Recently, it has grown a public debate on the carer fatigue: physical and emotional exhaustion, and social isolation experienced in taking care of people with chronic disorders, mostly elderly persons affected by neurodegenerative diseases often requiring intensive assistance for years. The carers movement re-calls in part the ʻpersonhood movementʼ (Leibing 2006; 2017; Moser 2011), which have contested the cultural vision of dementia and chronic-degenerative diseases as a loss of personhood and as a disruption of social life. This paper presents a preliminary set of ethnographic data collected from NGOs' and social services' carer support groups in Northen Italy. Drawing on the consideration of fatigue as an intrinsic component of care rather than as an aberration and anomaly (Danely 2017), I aim to argue that cultural meanings related to fatigue can lead to the re-negotiation of ethical norms of kinship and relatedness present in biomedical environments, that challenge the validity of reductionist, medicalized models of the ʻcare burdenʻ (Greenwood et al. 2018), and celebratory narratives of the social value of family home care (Leibing 2017) in the context of intensive population aging. Sharing care experiences throughout carer groups can result in calling into question individual and collective responsibilities toward others in need (Levinas 1978; Rapport 2018), by putting into crisis the idea of an exclusive dyadic relationship between a care-giver and a care-recipient (Taylor 2017) and thus redefining the boundaries of both traditional family and communal obligations to care (Goodwin, Hawkins 2018). At the same time, the narrations on the care fatigue have embedded the ambiguities related to the distinctions between the subjectivities of paid and voluntary (family) carers, as well as between recognized healthcare professionals and underestimated migrant (home) care workers (Muehelebach 2012; Sadler 2013; Amrith 2017). The ambiguities present in the public claims of the carers movement confirm that the notions and ethics of care have an enormous potential of both inclusion and exclusion (Alber, Drotbohm 2016: 1-3).
Diodati, F. (2019). The recognition of the fatigue of caring. Redefining the boundaries of ethical responsibilities toward others in need.. Intervento presentato a: "Kinship, Chronic Illness and Responsibility of Care", Workshop Edinburgh Center for Medical Anthropology, Edinburgh, UK.
The recognition of the fatigue of caring. Redefining the boundaries of ethical responsibilities toward others in need.
Francesco Diodati
2019
Abstract
Recently, it has grown a public debate on the carer fatigue: physical and emotional exhaustion, and social isolation experienced in taking care of people with chronic disorders, mostly elderly persons affected by neurodegenerative diseases often requiring intensive assistance for years. The carers movement re-calls in part the ʻpersonhood movementʼ (Leibing 2006; 2017; Moser 2011), which have contested the cultural vision of dementia and chronic-degenerative diseases as a loss of personhood and as a disruption of social life. This paper presents a preliminary set of ethnographic data collected from NGOs' and social services' carer support groups in Northen Italy. Drawing on the consideration of fatigue as an intrinsic component of care rather than as an aberration and anomaly (Danely 2017), I aim to argue that cultural meanings related to fatigue can lead to the re-negotiation of ethical norms of kinship and relatedness present in biomedical environments, that challenge the validity of reductionist, medicalized models of the ʻcare burdenʻ (Greenwood et al. 2018), and celebratory narratives of the social value of family home care (Leibing 2017) in the context of intensive population aging. Sharing care experiences throughout carer groups can result in calling into question individual and collective responsibilities toward others in need (Levinas 1978; Rapport 2018), by putting into crisis the idea of an exclusive dyadic relationship between a care-giver and a care-recipient (Taylor 2017) and thus redefining the boundaries of both traditional family and communal obligations to care (Goodwin, Hawkins 2018). At the same time, the narrations on the care fatigue have embedded the ambiguities related to the distinctions between the subjectivities of paid and voluntary (family) carers, as well as between recognized healthcare professionals and underestimated migrant (home) care workers (Muehelebach 2012; Sadler 2013; Amrith 2017). The ambiguities present in the public claims of the carers movement confirm that the notions and ethics of care have an enormous potential of both inclusion and exclusion (Alber, Drotbohm 2016: 1-3).
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