A framework for disability lived expertise

This article introduces a framework for disability lived expertise, aiming to address the undervaluing of contributions from people with disability in crucial sectors such as policy, services, rehabilitation, education and research. It distinguishes between disability lived experience, which is the personal and individual experience of disability, and 'lived expertise', which builds on personal experience through critical reflection and engagement with the disability community. Developed by seventeen individuals with diverse disabilities, the framework outlines key components of disability lived expertise, including: Leadership qualities: rejecting paternalism, emphasising self-determination and challenging conventional paradigms. Core values: including loyalty and solidarity with the disability community, humility alongside pride, a focus on human rights and access, courage for sustained change, and managing personal triggers. Essential skills and knowledge: covering human rights principles, disability history, the social model, ableism, intersectionality, co-design and community organising. The framework views lived expertise as a dynamic capability, nurtured through reflection, community engagement and resources. It acknowledges the complexities of disability identification and disclosure, advocating for individual choice in self-identification without rigid rules. Ultimately, this framework seeks to validate previously marginalised knowledge, reshape power imbalances and empower people with disability to leadership roles aimed at a more inclusive and equitable society.

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Publication Details

Journal
Evidence & Policy
Published
2025-10-09
DOI
https://doi.org/10.1332/17442648y2025d000000069
Citations
1
Primary Topic
Disability Rights and Representation
Type
article
Field-Weighted Citation Impact
2.37
Controls
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article

A framework for disability lived expertise

John Bourke, Damian Mellifont, Simon Katterl, Scott Denton et al.
1 citations
Evidence & Policy
Disability Rights and Representation
2.37
article

A framework for disability lived expertise

John Bourke, Damian Mellifont, Simon Katterl, Scott Denton, Lorna Hallahan, Bruce O’Brien, Susan J. Connor, Annmaree Watharow, John Gilroy, Shane Clifton, Ally Drinkwater, Suzie Jessep, Frances Quan Farrant, Robert Wynn, Emma Cooper, Benny Dominish, Clare Gibellini
article en
1 citations

Abstract

This article introduces a framework for disability lived expertise, aiming to address the undervaluing of contributions from people with disability in crucial sectors such as policy, services, rehabilitation, education and research. It distinguishes between disability lived experience, which is the personal and individual experience of disability, and 'lived expertise', which builds on personal experience through critical reflection and engagement with the disability community. Developed by seventeen individuals with diverse disabilities, the framework outlines key components of disability lived expertise, including: Leadership qualities: rejecting paternalism, emphasising self-determination and challenging conventional paradigms. Core values: including loyalty and solidarity with the disability community, humility alongside pride, a focus on human rights and access, courage for sustained change, and managing personal triggers. Essential skills and knowledge: covering human rights principles, disability history, the social model, ableism, intersectionality, co-design and community organising. The framework views lived expertise as a dynamic capability, nurtured through reflection, community engagement and resources. It acknowledges the complexities of disability identification and disclosure, advocating for individual choice in self-identification without rigid rules. Ultimately, this framework seeks to validate previously marginalised knowledge, reshape power imbalances and empower people with disability to leadership roles aimed at a more inclusive and equitable society.

Evidence & Policy
The University of Sydney (AU), The University of Queensland (AU), Flinders University (AU), Living with Disability (GB), RED Consulting (Norway) (NO), Spinal Injuries Center (JP), Australian Federation of University Women – South Australia (AU), Melbourne Free University (AU)
Openalex Percentile: Top 9%
Disability Rights and Representation
2.37
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