Those affected by research should help shape it: setting questions, interpreting findings and sharing the benefits.
Key thinkers: Paulo Freire, Orlando Fals Borda, Robert Chambers
The longer story
'Nothing about us without us' extends beyond disability justice to a broader principle: research should be done WITH people, not ON them. Participatory ethics challenges the extractive model where researchers take data and disappear. Instead: participants as co-researchers, shared ownership of questions and findings, community benefit built in from the start. This is the ethics behind Participatory Action Research, co-design, and community-based approaches. It requires slowing down, sharing power, accepting that 'your' research isn't entirely yours. The payoff is research that's more legitimate, more useful, and more likely to actually change something. Who decides what gets studied, and who benefits?