Ethical dimensions in encounters with families with a disabled child

Abstract

AbstractParents of a disabled child experience complex situations with varied and sometimes contradictory needs, interests, and emotions, and with ambiguities related to the possibilities for both child and family in the context of contemporary normative ableist thinking. In this review, we propose ethics based on ‘flourishing’ and ‘thisness’; with the goal to encourage people to see encounters with parents and families as emergent experimental spaces in which we remain open and interested in developments rather than in fixed ideas. Working with parents with lived experiences of raising a disabled child, we explore the collaboration processes among families, their support networks, and (medical) professionals. These encounters require an ethical perspective, with emergent listening as central to the process. A story is used to highlight the importance of listening as part of an assemblage, recognizing what is already there and affirming the potential for change. Engaging in ethical encounters with families with a disabled child asks for epistemic humility and the willingness to be unsure. Rather than offering step‐by‐step strategies, we open up for the encounter with the ‘incalculable other’.