Abstract

Focusing on the interactions between people suffering from neuromuscular diseases and their wheelchairs, the author raises the question of action: how is action made possible for people suffering from neuromuscular diseases? Starting with actor-network theory, the author shows that action not only results from distribution and delegation to heterogeneous entities but emerges from hard and lengthy work that makes the relation between them possible (or not) and transforms the entities involved. The author describes this work, called the process of adjustment, as work on the links making a person, his or her body, and his or her world. Through this work, new possibilities of action emerge for the person, but also new (dis)abilities; the person’s identity is transformed and shaped. This analysis leads to a particular conception of the person as made up through his or her relations to other entities (human and nonhuman).

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