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Disability, Gender and Narratives of Pain: The Caregivers’ Perspectives









Author(s)

Olga Nelly Estrada, Griselda Zárate

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DOI:10.17265/2328-2177/2016.01.003

Universidad Autónoma de Nuevo León, Mexico Tecnológico de Monterrey, Mexico

This paper analyzes how caregivers’ narratives about pain and illness are constructed, and also what narrative identities are formed during the lengthy process of taking care of a woman with cerebral palsy, from the years of 1972 to 2014. Of particular interest is how these voices narrate feelings of struggle in order to cope with their own needs and the needs of a disabled woman. How this situation affected their way of living, their views about life through gender-sex, violent, discriminatory, psycho-social and cultural perspectives (Lamas, 2002)? This study also draws from Hydén’s ideas regarding narratives about illness to identify diverse forms to represent reality by means of creating affective bonds, including aspects such as plot, metaphors and the construction or reconstruction of the Self (1995; 1997), which can be related to the transformation of the narrative identity (Ricoeur, 1995; 1996) of each caregiver. This study aims to open other scenarios to establish public policies of support for caregivers and for the disabled, and to question the role that government and medical institutional have played in order to benefit the society as a whole.

gender, caregivers, narrative identity, narratives of pain