Toward Equity in Research on Intellectual and Developmental Disabilities

• Published in: American journal on intellectual and developmental disabilities Vol. 128; no. 5; pp. 350 - 370
• Main Authors: Kover, Sara T, Abbeduto, Leonard
• Format: Journal Article
• Language: English
• Published: United States American Association on Intellectual and Developmental Disabilities 01.09.2023; American Association of Intellectual & Developmental Disabilities
• Subjects: Autism; Biomedical Research - trends; Child; Concept Formation; Culture; Developmental Disabilities; Disability discrimination; Diversity, Equity, Inclusion; Down syndrome; Educational Research; Equal Education; Humans; Intellectual disabilities; Intellectual Disability; Multiculturalism & pluralism; Race; Racism; Recruitment; Reliance; Social exclusion; Social systems; Society; Sociodemographics; diversity; race; advocacy; bias; intersectionality; interprofessional education; disability justice; models of disability; self-representation; bilingualism
• ISSN: 1944-7515; 1944-7558; 1944-7558
• DOI: 10.1352/1944-7558-128.5.350

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.