Disability by association for siblings of adolescents and adults with cognitive disabilities

Abstract

This paper analyses the impact of disability on the social identities of siblings of young people and adults with cognitive disabilities. The main aim is to empirically support the concept of ‘disability by association’, which refers to the attribution of an associative identity due to the presence of a disabled member in the family. Evidence is drawn from a qualitative study, made up of 32 in-depth interviews and two focus groups with siblings without disabilities. The results confirmed the impact of interactive effects on the lives and behaviours of the interviewees. The internalisation of the oppression experienced by siblings, even in the absence of actual negative incidents, limits their social life experience and identity construction. Although the siblings develop non-medical representations of disability and impairment, this conceptual repertoire is not strong enough to challenge devalued images of cognitive disability.

Points of interest

• Siblings’ points of view are underdeveloped, while most studies focused on parents’ perspectives.

• The research found that siblings have different views on disability and impairment than parents.

• Siblings may experience stigma and exclusion due to their brothers and sisters’ disability.

• The research recommended that siblings’ difficulties and needs be taken into account when talking about the experience of disability within families.

Keywords:

• Cognitive disability
• siblings
• disability by association
• disability studies
• courtesy stigma

Acknowledgements

I would like to thank professor Mario Cardano for his fundamental supervision, Rossella Bo, Alberto Sacchetto, Daniela Vandoni and Mauro Mottura for their collaboration and all the siblings who generously told their stories.

Disclosure statement

The author declares no conflict of interest.

Additional information

Funding

The study presented herein was supported by Fondazione Crt and Fondazione Goria, within the Research Grant: ‘Master dei Talenti per la Società Civile’ and co-funded by Area Onlus and Consorzio R.I.S.O.