What Does It Mean to Be a ‘Person’ With Profound and Multiple Learning Disabilities? Presenting the Views of Family Members and Allies

Abstract

Background

Individuals with profound and multiple learning disabilities are at the centre of debates about what it means to be a person. These debates sometimes start from the position that a person is somebody who possesses mature cognitive abilities, such as intentional communication skills and self-reflection (which individuals with profound and multiple learning disabilities are sometimes said to lack). However, those closest to people with profound and multiple learning disabilities are rarely consulted. This paper presents research that addresses this gap.

Methods

Ten unstructured interviews were conducted with family members, friends and allies of the profound and multiple learning disabilities communities. Participants were asked to discuss what being a person meant to them, using their knowledge of supporting individuals with profound and multiple learning disabilities.

Findings

Interviewees suggested that a person was fundamentally a relational being, but this relationality was described in a myriad of ways (e.g., as mutual dependence, social role, social gradient, interactionist and storied).

Conclusions

A richer understanding of the personhood of individuals with profound and multiple learning disabilities can be developed by listening to more family members and allies, and this can provide a counter-narrative to the current dominant rational view of personhood.