People with disability are often left out at the beginning of the research process when organisations want research done quickly. This reduces the level of power they have as members of the research team. For co-design in research to be effective, people with disability must be in decision-making positions before research proposals are developed.
People with disability are expected to be involved as researchers and decision-makers in research projects. But co-design methods require respect for the process from the outset.
Researchers have to navigate tensions inherent within research institutions when involving people with disability from the beginning of the process. Improving the quality of the research is one of the aims of co-designing with people with disability. It also gives an opportunity to employ people who might not otherwise find a job.
A research team led by Flinders University use a case study to show how to engage with prospective co-designers. They looked at the different factors or conditions that enable or constrain co-design work, and how they relate to each other. The funding of commissioned work has an effect on the internal dynamics and relations within the team. They also found that authority and power can shift and change depending on how these components interact.
Clearly there is more to simply gathering a group of people with disability within a research team and thinking co-design will just happen. Factors such as institutional requirements, and authoritarian hierarchies can have a significant impact on co-design processes.
The title of the article is, Shifting power to people with disability in co-designed research.
People with and without disability need to work together to resist when co-design work is not treated with respect by people or systems.
From the 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.
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. The value of co-designing research was centre to articulating key issues, methodology and analysis.
Co-research with Experts with Disability
The following abstract is from a paper that requires institutional access for a free read.
The title of the paper is Inclusive Co-research with Experts with Disabilities.
Abstract
Existing co-research methods often limit participation and perpetuate exclusion of highly diverse populations. This chapter introduces an approach to co-design research that is inclusive and supports full participation of individuals with unique or diverse needs.
Co-research has moved from the “design for” perspective to the “design with” perspective, and more recently to the “design by” perspective. Design by means that the population most impacted by the design is supported in creating the design.
Inclusive co-design is a mindset that is applied in three ways: appreciating, scaffolding, and keeping (the ASK approach). Appreciating involves recognition of co-researchers as experts in their lived experience. Through scaffolding, co-researchers are supported and given the means to participate fully in the research process.
Keeping gives ownership and builds capacity within the co-researchers and their communities in the research process and outcomes. Each of these three aspects are described in detail, building on our own experience from over one hundred inclusive co-design research activities, to provide guidance and approaches to other researchers who want to engage in inclusive co-design research.