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The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adult with profound disabilities, I argue that caregiver knowledge while unconventional within the medical paradigm must be viewed as essential expertise. People with profound intellectual disabilities often have concurrent, complex medical issues that are complicated by their inability to self-advocate. Optimal care rests upon the ongoing presence and expertise of their primary caregiver. Medical professionals risk patient care by excluding the essential expertise of family caregivers at any time, and specifically during COVID-19.

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. [ABSTRACT FROM AUTHOR]