A Holy Mess of a Story: Maternal Reflections on Caregiving, Chaos, and Intellectual Disability

Drawing on Frank's illness narratives, the mother of a profoundly disabled son argues that Vanier and Nouwen's descriptions of caregiving conform to the socially mandated quest narrative requiring stories of triumph. Their stories of spiritual growth have become a master text colonizing th...

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Bibliographic Details
Published inJournal of disability & religion Vol. 27; no. 1; pp. 124 - 137
Main Author MacGregor, Laura
Format Journal Article
LanguageEnglish
Published Philadelphia Routledge 02.01.2023
Taylor & Francis Ltd
Subjects
Caregiving
Children with disabilities
Confusion
Intellectual disabilities
Intellectual disability
L'Arche
Mothers
Narratives
parent
Personal development
Religious communities
suffering
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Summary:Drawing on Frank's illness narratives, the mother of a profoundly disabled son argues that Vanier and Nouwen's descriptions of caregiving conform to the socially mandated quest narrative requiring stories of triumph. Their stories of spiritual growth have become a master text colonizing the experiences of mothers caring for children with intellectual disabilities, particularly among faith communities. Rather than a journey of spiritual growth, research indicates that the lives of mothers often resemble a chaos narrative of spiritual confusion, paradoxically fused with joy. Providing effective spiritual care requires that faith communities honor anti-narratives of caregiving chaos.
ISSN:2331-2521
2331-253X
DOI:10.1080/23312521.2021.1932688