- This paper is a practical illustration of the value of lived expertise in disability research, and challenges researchers to work harder to ensure that people with disability shape the research agenda.
- Leadership by, and collaboration and consultation with, people with disability informed the development of a framework to monitor Australia’s progress on reducing inequalities in the social determinants of health and wellbeing for people with disability.
- Input from an expert panel of advice comprising people who live with disability resulted in changes to the language, shape, and detail of the framework.
- Insights that emerged from the expert panel consultation process informed and enriched the framework development process, including by highlighting the inter-connectedness of and interactions between topics represented in different framework domains, and the complexity added by considering how particular social determinants of health interact with different lived experiences of disability.
- Expert panel input resulted in changes to the framework and indicators, including:
- Changes to language, to avoid the use of terms that may inadvertently communicate ableist and derogatory assumptions – e.g., not using the term ‘working-aged people’ as this may tend to imply that engaging in work is central in determining people’s worth as human beings, and avoiding use of the term ‘behaviour’, which is often used in a negative way in relation to people with intellectual disability.
- Changes to structure – e.g., grouping domains under three broad elements (Health, Social determinants of health, and Service systems) to achieve a more user-friendly structure.
- Changes to content – e.g., addition of a ‘Family and relationships’ domain, and addition of indicators relating to bullying and to personal income (in addition to household income).
- The expert panel highlighted some important considerations relating to how indicator data should be reported and interpreted, including the need to acknowledge that people with complex disability may be missing or misrepresented in key national data sources. The panel emphasised that efforts should be made to ensure that the way data are presented does not reinforce negative conceptions of disability, but rather conveys messages about inequality and injustice that must be addressed.
The full article is available here:
Clifton S, Fortune N, Llewellyn G, Stancliffe RJ, Williamson P. Lived expertise and the development of a framework for tracking the social determinants, health, and wellbeing of Australians with disability. Scandinavian Journal of Disability Research. 2020: 22(1),137–146. https://www.sjdr.se/articles/10.16993/sjdr.688/