‘Five rungs down’: encounters between disabled parents and the medical institution

Disabled people face particular additional barriers of access to health care. In this article, we explore how these barriers increase when disabled parents require medical attention for their children. Using the small story research technique, we analysed 24 interviews with disabled parents conducted as part of a qualitative-narrative study in Chile. We identified stories in which the participants describe encounters with the medical institution in which they are invisibilised and disempowered. A paternalistic and biomedical approach, which actively ignores how to interact with disabled people, prevails among healthcare staff. Disabled parents irritate the medical institution because they do not have ‘standard’ bodies and are in the position of the carers of others (their children), rather than that of people who require care. These parents develop strategies to resist the way they are treated, making extra efforts to obtain medical attention for their children.