Expectations of and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden

Abstract

Background: Much research has been devoted to the emotional burdens of having a child with intellectual disability (ID), but very little of this has focused on the burdens imposed by negative public attitudes towards disability. Adjustment has primarily been thought of as adjustment to the actual disability rather than adjustment to attitudes or prejudices towards disability.

Aim: The aim of the present study was to study expectations of and reactions to disability and normality experienced by parents of children with ID in their everyday life in Sweden.

Research questions: Do the parents relate to the tragedy discourse and, if so, how? Do parents relate to other expectations and disability discourses and, if so, how? What subject positions do the discourses offer?

Method: The analysis was based on 17 semi-structured interviews with nine fathers and eight mothers of nine children with different IDs. The children were newly diagnosed and were from 6 months to 5 years of age.

Results: Four discourses (tragedy and the lived experience, tragedy and the outsider perspective, the clinical gaze and the super-parent ideal) and subject positions relating to these discourses are discussed.

Discussion: The results of this study show that parents of young children with disabilities relate to a wide range of social processes and practices, which could be thought to affect their emotional well-being and parental identity negatively.