Between us: Facilitated decision-making in the relational experience of profound intellectual disability

Abstract

This article situates an analysis of facilitated decision-making in the lived relational experience of caring for someone with a profound intellectual disability. Drawing from the experiences of a father and daughter residing in Boston, Massachusetts, I highlight the emotional dynamics and expressions of ableism that reverberate through social institutions and intersubjective relationships in shaping actions and practices around decision-making support. These ubiquitous encounters, rooted in shared relational histories, bring into focus the affective grounds and embodied motivations that inform the practice of facilitated decision-making within public spaces and systems. In the context of this article, these decisions are geared toward carving out a place of belonging, a goal beset with uncertainty. By demonstrating that disability is a relational experience and that decision-making is an embodied evaluative process, deeply entwined with social and communicative practices, I aim to show what this practice looks like in the thick of everyday moral life.