Translating and Transforming Care People With Brain Injury and Caregivers Filling In a Disability Claim Form

Alex Gillespie; Helen Moore

doi:10.1177/1049732315575316

Translating and Transforming Care

People With Brain Injury and Caregivers Filling In a Disability Claim Form

¹London School of Economics, London, United Kingdom
²University of Birmingham, Birmingham, United Kingdom

Alex Gillespie, London School of Economics, Houghton Street, London, WC2A 2AE, UK. Email: a.t.gillespie{at}lse.ac.uk

Abstract

This article examines how the Disability Living Allowance claim form, used in the United Kingdom to allocate £13 billion of disability benefits, translates and transforms disability and care. Twenty-two people with acquired brain injury and their main informal caregivers (n = 44) were video-recorded filling in the disability claim form. Participants disagreed on 26% of the questions, revealing two types of problems. Translation problems arose as participants struggled to provide categorical responses to ambiguous questions and were unable to report contextual variability in care needs or divergences of perception. Transformation problems arose as participants resisted the way in which the form positioned them, forcing them to conceptualize their relationship in terms of dependency and burden. The disability claim form co-opts claimants to translate care and disability into bureaucratically predefined categories, and it transforms the care relationship that it purports to document.

Article Notes

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study received financial support from the University of Stirling.

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