The Work Ahead for Intellectual and Developmental Disabilities Research.
IDD research must move from studying people to studying with them.
01Research in Context
What this study did
Zwiya et al. (2023) wrote a roadmap for fixing IDD research.
They say studies still treat people as problems to fix, not partners.
The paper lists five jobs: use participatory teams, share power, count everyone, mix methods, and train new scholars.
What they found
No new numbers. The team shows the old way hurts people.
They argue deficit models feed stigma and bad care.
The fix is research done with, not on, the disability community.
How this fits with other research
Kleinert et al. (2007) and Ford et al. (2013) already won the word fight. They proved "intellectual disability" beats "mental retardation." T et al. widen the fight from labels to whole study designs.
Ohan et al. (2015) ran an RCT showing elite word bans can backfire and raise stigma. T et al. take the warning: change must come from the community, not from the top.
de Leeuw et al. (2024) extend the same justice lens to criminal-justice research. Together the two papers form a toolkit for equity across systems.
Why it matters
You run assessments, write goals, and train staff. This paper tells you to add client and family co-researchers to every step. Ask them what questions matter, then let them help design the probe, interpret the graph, and pick the next target. Your next study, CEU event, or program evaluation can start tomorrow with one simple rule: nothing about us without us.
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02At a glance
03Original abstract
In "Toward Equity in Research on Intellectual and Developmental Disabilities," we sought to make entrenched assumptions and practices of intellectual and developmental disabilities research visible by explicitly describing the status quo in terms of models of disability, participant and researcher identities, research priorities, and biases in measurement and treatment approaches. We then curated individual- and systems-level actions drawn from disability justice and broader social justice lenses to offer a way forward. We focused on three major areas (i.e., intersectionality and person-centered approaches, participatory research, and interprofessional collaboration), depicting influences, methods, and actions in a framework of disability, identity, and culture. In this Author Response, we address five commentaries that critique and extend that synthesis.
American journal on intellectual and developmental disabilities, 2023 · doi:10.1352/1944-7558-128.5.388