“I'm not moving from here until you resolve this for me”: mothers of disabled children overcoming barriers to health care

Mothers of disabled children typically fulfil the role of the primary caregiver. For mothers of children with Congenital Zika Syndrome in Colombia, the caregiver role extends far beyond the provision of direct personal care within the private sphere of the home. Their children require specialist interventions, and mothers negotiate access on behalf of their children. In the process, they frequently encounter barriers to timely access to healthcare and welfare for their child. Barriers and facilitators have received significant attention in the literature, but caregivers responses to barriers have been largely overlooked. Drawing on ethnographic research conducted between February 2022 and March 2023 with mothers of children with Congenital Zika Syndrome in Barranquilla, Colombia, I address this gap. In my analysis, I bring together Menéndez' concept of autoatención (self-management) with Madden's conceptualisation of cultural health capital to explore how mothers respond to barriers and negotiate access to healthcare on behalf of their child. They adopt diverse strategies to draw together formal and informal spaces of attention and care, make use of both biomedical and alternative interventions, and share information about how they manage their child's health with other caregivers. This analysis highlights the essential role of their gendered reproductive labour in ensuring healthcare access and efficacy.