Abstract
Focus of Presentation
In this presentation, I discuss how activism and lived experience can enhance epidemiological research. I argue that my lived experience of disability and activism, enhance my research because I: have understanding of the contexts in which disabled people live, I focus on what is relevant to disabled people, and have the impetus to interrogate government knowledge claims. I illustrate this through two research/activism scenarios: COVID-19 pandemic proposed reforms to Australia’s National Disability Insurance Scheme (NDIS) – which provides individual budgets for nearly 500,000 Australians with disability.
Findings
During the COVID-19, I spearheaded ‘calls to action’ for governments to respond to the specific risks faced by people with disability. I led a research demonstrating the risks to disability support workers. My expert witness testimonies at the Disability Royal Commission were central to the Commission’s recommendations. And my work changed government policies relating to managing outbreaks in disability settings and vaccination. In relation to the NDIS, I have critiqued the research government conducts, and the data they use, to support their arguments for reform.
Conclusions/Implications
Being an activist with lived experience requires reflexivity to ensure individual biases are not reinforced, but it also offers opportunities. Research is contextualised and the pathway to change more easily charted. Epidemiology should foster the careers of researchers with lived experience who maybe activists as well.
Key messages
Lived experience researchers and activists can enhance epidemiological research bringing unique insights and new opportunities for change.
The Shifting Risk of Homelessness among Persons with a Disability: Insights from a National Policy Intervention
