Shifting power to people with disability in co-designed research

Abstract

This paper explores tensions navigated by researchers and project leaders when involving people with disability as experts in co-design and in the core team. Part of an evaluation aiming to improve paid employment of people with intellectual disability is used to consider this work. Assemblage analysis of the data assisted in identifying a range of material and social conditions, flows, and factors that de- and re-territorialise power in the co-design process. The expertise of people with disability informed research design. Structural conditions of funding and institutional support were foundational to the co-design. These included accessible practices, core roles for people with disability and resolving ableist conditions. Power shifts were easily undermined by institutionalised norms that disrespected the co-design contributions. When people in decision-making positions and allies recognised the value of codesigning research, it was key to centring valuable knowledge in articulating key issues, methodology, and analysis.Points of interestIt is increasingly expected that people with disability will be involved as researchers and decision-makers in projects. This kind of co-design in research is very popular.When governments or organisations ask researchers to complete research quickly, people with disability are less likely to be involved in designing the research from the start.This reduces how much power they have as members of the research team.Our research found that people with and without disability needed to work together to resist when co-design work was not treated with respect by people or systems.Allies need to work to make co-design positions more secure. For example, people with disability need to be in decision-making positions before research proposals are developed.

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