‘What are we going to do’: Biographical disruption after brain injury and the role of human rights as a catalyst for change

Pearson, Paul (2024) ‘What are we going to do’: Biographical disruption after brain injury and the role of human rights as a catalyst for change. PhD thesis, University of Glasgow.

Abstract

People living with a brain injury face a range of negative outcomes and societal barriers that impact on their ability to participate in society. Whilst the medical and neuroscience literature on brain injury is vast and growing, understanding of how people navigate society and different life phases following injury remains limited. The thesis addresses this major gap in the literature as it foregrounds the experiences and perspectives of people with brain injury which have been hidden historically, and in doing so reimagines an oppressed group as dignified, rights holders. The use of the dual lens of biographical disruption and a human rights-based approach is a further theoretical contribution. Both position the participant as agentic, as capable, and as deserving of an improving life. Furthermore, this research adds to the understanding of the role of brain injury support groups, which whilst long established, lack understanding from the perspectives of the people that they aim to serve.

The thesis ethnographically explores the experiences of people who have a brain injury and involved a participant observation of a brain injury support group, in addition to biographical interviews with members of the group. By using the dual lens of biographical disruption and human rights-based approach, an innovative qualitative approach was created that foregrounded participants experience and revealed both their attempts to navigate society and the barriers to being and doing that they faced. These barriers began at the point of admission but were revealed to be multi-faceted and enduring long after the traditional ‘treatment’ phase ended. Participation in society was compromised, accountability largely absent, discrimination repeated, and processes were undermined by a lack of empowerment. The injury, whilst medical in its initial phase, was revealed to be an inherently social process, and one that was characterised by imbalances of power and a lack of rights-realisation. The narratives within highlight that in the absence of rights, resilience, and resistance, rather than rights-realisation, were the tools participants had at their disposal.

• Item Type: Thesis (PhD)
• Qualification Level: Doctoral
• Additional Information: Supported by funding from the Scottish Graduate School of Social Science and Headway Glasgow.
• Subjects: H Social Sciences > HV Social pathology. Social and public welfare; K Law > K Law (General); R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
• Colleges/Schools: College of Social Sciences > School of Social and Political Sciences
• Funder's Name: Economic and Social Research Council (ESRC)
• Supervisor's Name: Ferrie, Professor Jo and Bunn, Professor Christopher
• Date of Award: 2024
• Depositing User: Theses Team
• Unique ID: glathesis:2024-84733
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 03 Dec 2024 16:11
• Last Modified: 03 Dec 2024 16:14
• Thesis DOI: 10.5525/gla.thesis.84733
• URI: https://theses.gla.ac.uk/id/eprint/84733