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

Abstract

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.

Points of interest

• We analyze small stories where disabled parents talk about how they are treated by healthcare staff (for example, doctors and nurses).

• Disabled parents say that healthcare staff don’t see them and don’t think they can do things.

• In these stories, the healthcare staff pay more attention to the parent’s disability than to the child who needs help.

• Healthcare staff think of disability as something that limits a person. This can make it hard for parents and their kids to get the help they need.

• Disabled parents find ways to stand up to the way healthcare staff treat them and make sure their children get help from doctors.

Keywords:

• Disability
• parenthood
• disabled parents
• health access
• small stories

Acknowledgments

We would like to thank the participants who trusted us and so generously shared their experiences. We also want to express our gratitude to Sofía Atria for her help in transcribing the interviews and Ruth Bradley for translating the original manuscript into English.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the National Agency for Research and Development (ANID) under grants FONDECYT N°1210575, the Millennium Nucleus Studies on Disability and Citizenship (NCS2022_39), the Millennium Institute for Care Research (MICARE – ICS2019_024) and Diego Portales University.