Attuned Fathering and the Moral Dimensions of Caregiving

Individuals with severe cognitive disabilities are often thought to be born with limited interpersonal capacity, rendering their emotional lives inaccessible. Family caregiving for individuals under these circumstances is portrayed in the contemporary literature variously as ranging from being a positive transformative experience to being a burden. If we focus on the experience of caregiver burden, we see communication or language issues can complicate caregiving, given the interpersonal impenetrability this sometimes entails. However, this focus overlooks the inter-bodily dimensions of caregiving and how parents gain access to the emotional lives of their children in the absence of language. In limiting our disciplinary focus to particular kinds of relationships premised on normative forms of intimacy or reciprocity, we do more to reproduce a particular moral philosophic tradition that views human personhood as dependent upon cognition and language. This article contributes to an anthropology of disability and moralities by exploring how the practice of caregiving within the context of severe cognitive disability shapes the moral lives of fathers. Drawing on my own experience as the father of a multiply disabled son and ethnographic research on men in similar circumstances in the United States, I show how parents become ever-more attuned to the practical and emotional needs of their children through intimate, everyday acts of care and the shared meanings that grow and deepen on the basis of the body’s capacity for resonance and fellow feeling.