Toward Equity in Research on Intellectual and Developmental Disabilities

Abstract

Lack of diversity in IDD research is typically conceptualized only in terms of (1) recruitment of samples that do not appropriately represent the sociodemographics of the population, or (2) the limited number of researchers from historically marginalized backgrounds. Critically, the field also suffers from over-reliance on perspectives and social systems of dominant culture-both in how disability is regarded and in relation to other dimensions of identity and culture. These lenses lead to research findings that reinforce, rather than reduce, social inequities. We propose a framework that minimizes reliance on diagnostic categories, shifts from deficit- to person-centered models, acknowledges people's multiple identities, and includes self-advocates and diverse communities as partners in the research enterprise. The systems change necessary to support this framework is described.

Keywords: advocacy; bias; bilingualism; disability justice; diversity; interprofessional education; intersectionality; models of disability; race; self-representation.

Figure 1.

Framework for individual- and systems-level change to foster more equitable IDD research processes, to perturb systems that perpetuate IDD disparities in healthcare and education, and to increase equitable impact of research on wellbeing in intellectually disabled people. Note that black text in the conceptualization panes shows models and strategies that increase equity; light text shows detractors from equity. IDD = Intellectual and developmental disabilities ICF = International Classification of Functioning, Disability, and Health