Disempowerment and identity goals in intellectual disability: a sibling's perspective on living with chronicity

Abstract

Intellectual disability is a chronic condition that affects one’s autonomy, decision-making ability, and the development of personal identity. Disempowerment literature, such as the concept analysis by Tse et al. (2025), focuses on adult-onset disabilities and the professional-patient relationship, and overlooks how the family system serves as an instrumental agent in the foreclosure of personal identity. Drawing on sibling observation over 23 years, this account explores the role of protective familial discouragement, systematically restricting goal pursuit, in Thomas (pseudonym), a 23-year-old male with moderate intellectual disability who has always been told that his aspirations are unrealistic by those closest to him.

Grounded on the disempowerment model proposed by Tse et al. (2025), the identity adaptation theory suggested by Charmaz (1995), and the principles of dignity and autonomy set out by the OHRC (2016), the argument is this: the disempowerment experienced by Thomas does not originate from his disability, but from the sustained deprivation of opportunities to pursue a developmentally appropriate identity goal. In other words, Thomas’s behaviour, including his attempts to remove his G-tube and his verbal assertions of normalcy, is seen not as pathology but as active resistance and identity reclamation, thereby shifting the focus to the family as the primary source of disempowerment.

Also, this account implicates the author, as the older sibling and occasional agent of the same disempowerment it seeks to critique. For nursing, the implications include reconceptualizing behavioural outbursts as communication, recognizing siblings as informants, and that good intentions can sometimes cause more harm than good.