"We want respect": adults with intellectual and developmental disabilities address respect in research.

McDonald (2012) asked adults with intellectual and developmental disabilities what respectful research feels like.

The adults spoke in focus groups and interviews. They shared stories of times they felt heard and times they felt used.

Participants said respect means being treated as partners, not lab subjects.

They wanted clear words, real choices, and researchers who care about their lives after the study ends.

van Timmeren et al. (2016) later tested a tool that puts this respect into action. Their Nominal Group Technique let adults with IDD co-design health materials.

Richman (2008) showed another path: Photovoice lets adults take photos of their day and explain what matters to them.

Together these papers form a toolkit. McDonald (2012) sets the ethic: treat us as equals. The later studies give step-by-step ways to do it.

Before you write a consent form or start a survey, run it through the respect check. Would the adults in Elizabeth’s study feel like partners when they see it? If not, rewrite, add pictures, or hold a small Nominal Group session first. Respect is the first intervention.