Motherhood in the Shadow of Child Disability: An Analysis of Documentary Narratives from the Perspective of the Ethics of Care – A Research Report

Abstract

The aim of this article is to analyze experiences of motherhood in the context of a child’s disability and chronic illness, based on Jacek Hołub’s reportage book „Żeby umarło przede mną”. The article seeks to interpret the narratives of mothers raising children with various types of disabilities, with particular attention to the social mechanisms of stigmatization, isolation, and moral burden associated with caregiving. The study employs qualitative content analysis of the reportage, situated within the broader theoretical framework of the literature on the sociology of disability, special education, and the ethics of care. The case studies presented reveal the multidimensional nature of mothers’ experiences, encompassing both emotional and physical burdens as well as the consequences of systemic deficiencies in institutional support. The analysis indicates that motherhood in the context of a child with profound disability takes the form of intensive moral work, the burden of which falls predominantly on women. The article also demonstrates how reportage narratives can serve as an important source of knowledge about the social and existential dimensions of disability.