Reflections on How What We Say, Do, and Acknowledge as Intellectual and Developmental Disability Researchers Matters.

The author wrote a short think-piece, not an experiment. She asked: How can IDD researchers stop speaking about people and start speaking with them?

She reviewed her own past studies and listed ways she now shares power. Examples: pay participants, use easy-read consent forms, invite self-advocates onto the grant team.

No new data. Instead, the paper gives a checklist for inclusive research. Main point: treat people with IDD as co-experts, not subjects.

The author admits she once ran studies on people. She now hands over study design choices to self-advocate partners.

Hull et al. (2021) asked autistic adults what research they want. Both papers agree: let the community set the questions, not the lab.

Walker (2012) shows how to share power at the agency level. Her six-step guide for moving from group homes to individual flats mirrors the paper’s call to shift power in the lab.

Kydd et al. (1982) warned that what we say must match what we do. The new paper updates that idea: include people with IDD when you decide what to say and do in the first place.

If you write grants, recruit participants, or publish results, this piece is your nudge. Add budget lines for self-advocate consultants. Swap jargon-filled flyers for plain-language versions. Next team meeting, give the agenda to a co-researcher with IDD and let them lead part of it. Small moves like these turn "research on" into "research with," and they cost almost nothing.