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.
Authors
- John Bourke (ORCID: https://orcid.org/0000-0002-1113-7462)
- Damian Mellifont (ORCID: https://orcid.org/0000-0002-7920-4641)
- Simon Katterl (ORCID: https://orcid.org/0000-0002-6993-1036)
- Scott Denton (ORCID: https://orcid.org/0009-0009-4782-0835)
- Lorna Hallahan (ORCID: https://orcid.org/0000-0002-5580-5469)
- Bruce O’Brien
- Susan J. Connor (ORCID: https://orcid.org/0000-0001-5606-0270)
- Annmaree Watharow (ORCID: https://orcid.org/0009-0003-4194-9140)
- John Gilroy (ORCID: https://orcid.org/0000-0002-7934-8485)
- Shane Clifton (ORCID: https://orcid.org/0000-0003-3160-7131)
- Ally Drinkwater
- Suzie Jessep
- Frances Quan Farrant
- Robert Wynn
- Emma Cooper (ORCID: https://orcid.org/0009-0002-0127-7434)
- Benny Dominish
- Clare Gibellini
Institutions
- 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)
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