This blog was written by Brigitte Rohwerder.
The recent IDS Bulletin on Building Disability Inclusive Futures had a paper focused on disability inclusive participatory research and in this blog I’ll explore one element that’s focused on in the paper – participatory researchers with disabilities.
The lack of data about people with disabilities’ lived experiences has been a persistent barrier to improving their inclusion in society and the Disability Inclusive Development (DID) programme offered an opportunity to learn more about their experiences with education, health, livelihoods, and their lives more broadly; as well as about efforts to include them.
As part of the programme, a team of researchers at IDS, led by Mary Wickenden, together with researchers based in Bangladesh, Kenya, Nigeria and Nepal, conducted disability inclusive participatory research in conjunction with various partners, focused on the themes of inclusive education, livelihoods, and the impact of the outbreak of Covid-19 on people with disabilities.
A disability-inclusive approach to participatory research methods
More broadly, participatory research methods enable people to play an active and influential role in decisions that affect their lives. Participatory research processes value people’s knowledge; and their voices and analysis shape outcomes that benefit them and others.
Building on this definition, disability inclusive participatory research allows people with disabilities to have a say about their experiences and to be involved in processes to improve the situation. The methods and materials used when conducting disability inclusive participatory research recognise and adapt to the diversity of participants and their different support needs, so that people with disabilities are meaningfully included.
The paper reflects on including people with disabilities as participants; participatory researchers with disabilities; and positionality and power; and here I’m going to focus on these by looking at the involvement of peer researchers with disabilities in research that was part of a DID project working on disability inclusion in pre-primary education in Kakuma and Homa Bay in Kenya.
Recruiting and training peer researchers with disabilities
Working together with the local OPDs and partners, eight peer researchers with disabilities were recruited to gather research through focus groups with parents, teachers, and children with disabilities themselves.
The peer researchers were not expected to have high research skills already. Instead, those with experience of community facilitation, awareness of inclusion and disability rights, and a willingness to learn new skills were prioritised. The peer researchers received research training and then facilitated focus groups with the support of an experienced local research consultant. They were also involved in a collective analysis of the data gathered, providing an additional depth to the analysis through their lived experiences and contextual knowledge.
Engaging peer researchers also proved beneficial with the children, parents and teachers, with one peer researcher noting “Parents were motivated seeing me, a disabled person, interviewing them” and another feeling that they were a role model. It gave people a different understanding of what children with disabilities might achieve in the future, and that people with disabilities themselves had something to contribute to this topic. The peer researchers also gained confidence and research skills as a result of being involved in the research process.
Including children with disabilities in research
It was important to us that children with disabilities were also able to have a say about their experiences in the pre-primary schools, and that we did not only conduct focus groups with their parents and teachers. This approach recognises them as experts in their own lives, who may have differing opinions from their parents or teachers. The methods used for the focus groups with the children with disabilities were adapted to be both age-appropriate and accessible. Flexible play-based activities were developed to encourage the children to speak openly about what they liked or didn’t like at school, and what could be improved.
Lessons and trade-offs
However, this process was not without challenges, as while the team of peer researchers were diverse, they all had acquired physical or visual impairments and no applications were received from people with other impairments (e.g. hearing, communication, cognitive or psychosocial, and congenitally acquired). This risks perpetuating the marginalisation of certain groups and perhaps could have been overcome with a longer and more proactive approach to recruitment to encourage people from the more excluded groups to apply. The peer researcher approach is more complex, expensive and time consuming than conventional methodologies. In addition, while working with peer researchers was a form of co-production, the conventional power dynamics within research still existed to an extent. Yet working with peer researchers with disabilities contributes to bringing about a shift in whose knowledge counts and generated a rich diversity of findings.
Approaches to research that require delivery by experienced researchers, such as narrative interviewing around Covid-19 experiences, were also hard to recruit suitably skilled local researchers with disabilities for. The reasons for this are partially rooted in the systemic and historic barriers to education that people with disabilities face, resulting in fewer people with disabilities becoming professional researchers, especially in low-and middle-income countries. To address this challenge in the longer term, more resources and skills training could be provided to ensure that researchers with disabilities (as well as Organisations of Persons with Disabilities) get the opportunity to be involved. In addition, over time, as access to education improves, more people with disabilities will develop research skills and careers.
In conclusion, people with disabilities should be part of any research that is about them and participatory approaches hold great potential to contribute to their meaningful inclusion in research. We hope you will enjoy reading the paper and that it will provide useful insights for others who are already undertaking disability inclusive participatory research, as well as for anyone who is planning to do so in the future.
Note: the content of this blog was first presented at the launch seminar of the IDS Bulletin.