Participatory Research: Practical Guidelines for Co-Researching with People with Disabilities

There is a systemic lack of inclusion of people with disabilities in humanitarian response. This group faces barriers to accessing Water, Sanitation and Hygiene services and to meaningfully participating in needs assessments, programme design, implementation and evaluation.
Their rights and capacities to contribute to research are often overlooked. And despite facing disproportionate risks in disasters, people with disabilities have no voice in shaping the direction of research nor in making sure the research outcome benefits them.
ASB Indonesia and the Philippines developed a set of guidelines for co-researching with people with disabilities. Aimed at researchers and humanitarian actors, the guidelines are based on evidence of what works, and what doesn’t, in participatory research. That evidence was collected by the innovation team throughout the research stages with organisations of people with disabilities (OPDs).
The OPDs took part in the Steering Committee (a decision-making body made up of practitioners, scholars and disability groups representatives) and were able to monitor and provide recommendations on the team’s research directions. This placed the OPDs in an advisory, rather than purely an implementing role.
The guidelines fill the knowledge gap that previously existed. They extend the ‘nothing about us, without us’ principle into humanitarian research, so future research practices - particularly in the field of humanitarian response and social inclusion -can prioritise the meaningful involvement of people with disabilities at all stages.
Co-researchers with disabilities who took part in the research project reported feeling included. They came to understand what it takes to conduct research, and they were able to see how they could contribute in a very real and valuable way.
The innovation team has documented its co-research experiences in various forms, sharing the lessons learned and the possibilities for the future. There is great confidence that the innovation will help inspire more inclusive humanitarian system - one in which co-research with people with disabilities becomes the norm.
Arbeiter-Samariter-Bund’s research is part of its Elrha-funded project, “Investing in Inclusive Water, Sanitation, and Hygiene (WASH)”.

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