“He is never ever going to pay off.”: A relational care ethical response to ideas of ‘worthy mothering’ for a child with profound intellectual disability

The experiences and practices of caregivers and care receivers, as well as the emerging moral understandings that arise in those practices, have always been at the heart of care ethics. In the early years the focus was on practices of mothering (Ruddick 1989; Gilligan 1982; Noddings 1984), before Joan Tronto shifted the focus to the political context of the ethics of care in her pathbreaking Moral Boundaries (1993). In our research into practices of care for people with profound and multiple impairments, however, we discover that the informal care given predominantly by mothers, offers insights into care that have political power. We recognize their stories as profound critical counterstories against neoliberalism and against neoliberalist negative valuations of care.
In this chapter we claim that reproductive justice – the theme of this volume – is non-existent when the voices remain unheard of mothers who give demanding care to their children with profound impairments and for this reason bring sacrifices, also of themselves. Their experiences and practices are often questioned, as well as the worthiness of their children’s existence. Mothers and other parents experience criticisms of dedicating their lives to caring for their children and their experiences are sometimes discarded or dismissed as unworthy or the result of unacknowledged subordination in a patriarchal society. These responses attribute passivity to them and rob them of their voices and subjectivity (see also Van Nistelrooij 2015, 87). Such simplifying dismissals fail to recognize mothers and other caregivers as moral and political subjects.