Families and Disability: Meaning Perspectives and Transformations of the Parental Experience

Abstract

This paper offers a critical examination of how families and disability have been represented over time, articulated through three interpretative metaphors — degenerative, adaptive, and generative. These metaphors have profoundly shaped the ways in which the parental experience has been framed. The study seeks to move beyond linear accounts centred on loss, suffering, or adaptation, in order to restore complexity and depth to the biographical textures of families raising children with disabilities. Framed within a special-pedagogical perspective, the analysis highlights how dominant discourses have long confined family narratives within pathologising or functionalist paradigms, where parenthood has been understood as a site of guilt, crisis, or compensation. Drawing on narrative inquiry, the article traces the conceptual transitions from the paradigms of mourning and family crisis to more recent frameworks grounded in resilience, agency, and social generativity.
The discussion argues that families should be recognised not merely as objects of professional discourse, but as epistemic agents capable of producing and legitimising situated forms of knowledge that can inform and transform educational and social practices. Within this perspective, disability emerges not as a source of disintegration but as a catalyst for relational, ethical, and communal reorganisation within family life.