“This Is Not What I Thought Life Would Be Like”: Participation in the Disability Movement after a Trauma

This article explores participation in the disability movement from the perspective of individuals with acquired impairments, with empirical focus on Sweden’s high civil society engagement. Based on interviews with members and non-members of a disability organization, the study applies the civic voluntarism model to analyse engagement. Findings show that the model’s core questions of willingness, capacity, and recruitment require reframing: participation is driven more by perceived needs and a sense of worth than by resources or capacity, and digital technologies also shift emphasis from direct invitation to organizational awareness. Moreover, motivations change over time, rendering membership inherently temporal and fluctuating. While the model remains useful, it must adapt to reflect lived realities. The article argues that disability organizations should move beyond recruitment metrics to address deeper questions of purpose, inclusion, and value, thereby fostering more meaningful and sustainable participation.