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. 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 overcome resistance 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.
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.
Building capacity for engaged research
Talking about co-design and stakeholder engagement is one thing. Knowing how to do it is another. While organisations and universities like to make engagement central to their work, institutional practices are not keeping pace. Institutional policies, publishing pressures, and additional time needed stand in the way. Building capacity for engaged research is more than knowing how to run a focus group.
Engaged research embeds stakeholder views throughout the life of the research project. It encourages creation, and active collaboration with policy makers, practitioners and communities.
A workshop was held mid 2024 to bring together research leaders with hands-on experiences. These are people who are keen to see their research improve things for society and individuals. They see this as a timely opportunity for key people to coordinate their efforts. The result is a large volume published by the National Academies Press containing the workshop discussions and ideas.
Partnering with communities, policy makers and others is challenging. Measuring the impact of such research requires a suitable evaluation system.
The book of proceedings has 8 chapters:
- Introduction
- Importance of engaged researach
- Challenges and solutions: synthesising two landscape reviews
- Promising approaches for addressing key tensions in community engaged research
- Aligning mission and incentives: valuing and prioritizing engaged research
- Valuing diverse forms of expertise
- Aligning core values and measurements
- Next steps for action
The title of the publication is, Building Institutional Capacity for Engaged Research. You can read free online. Note this is an academic text with long sentences.
From the introduction
The complex challenges facing society today call for new ways of doing research that bring researchers, policy makers, community leaders and members, industry stakeholders, and others together. The aim is to identify evidence needs, contribute different kinds of knowledge and expertise, and use evidence to accomplish shared goals.
Although momentum is building toward a research enterprise that more routinely enables and rewards this type of collaboration, the development of institutional capacities to support diverse forms of engaged research have not kept pace with the need for them.
Co-create and trans-create
How do you co-design with people who have limited communication skills? After all, co-design methods are built on conversations. The first thing then, is to find a way to overcome this significant barrier. This means finding non-verbal methods to find out how they experience the world.
Researchers developed a method called this “trans-create” because it was similar to translating one language to another. The used tangible artifacts rather than words, paper and pens.
Instead of co-designing with children without disabilities for children with disabilities, we tried the opposite. We co-designed with children with disabilities for children without disabilities. We used music, rhythm, lighting, tangible artifacts and new programmable possibilities to facilitate communication and co-creation, as an alternative to verbal language.
Th title of the article is Trans-Create – Co-Design with Persons with Severe Disabilities.
From the abstract
Co-design methods are a challenge with persons with significantly different prerequisites for communication. It’s hard to know if what we design is good for them in the way they themselves define it. We present a new process called “trans-create” based on translating between cultures.
Using vision and sound and tangible artifacts we changed the distinction between designer and user and the design process and the user process.
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 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.
Keeping gives ownership and builds capacity within the co-researchers and their communities in the research process and outcomes. We build 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.
From the Ground Up: Establishing a Centre for Universal Design in Australia charts the establishment and development of CUDA. This paper was presented at the