Propositions for Race-Based Research in Intellectual and Developmental Disabilities

Abstract

A nuanced understanding of disparities impacting racialized people with intellectual and developmental disabilities (IDD) requires scholars employ research methods that make visible the structural factors that influence outcomes. Following the work of Tukufu Zuberi and Eduardo Bonilla-Silva, we explore race-based methodological considerations for disparities research with Black people with IDD. Specifically, we discuss (a) structural racism in research methods, employing disability critical race theory as a framework, (b) the absence of Black voices and Black scholarship, (c) the abstraction and misuse of race as a variable, and (d) mapping race as a point of discussion in the IDD discourse. Implications for research are discussed and recommendations for contextualizing race, ensuring equity in representation and dissemination, and amplifying the voices of Black scholars are provided.

Race and Ethnicity Reporting in Occupational Therapy Research Among Autistic Youth

“…While there are likely multiple factors contributing to the lack of historically marginalized groups in clinic-based studies, we discuss two here. First, Research consistently shows that Black and Hispanic children are diagnosed with autism later than White peers (Broder-Fingert et al, 2013; Magaña et al, 2012), which is associated with structural systems of oppression associated with the structure of the American health care system and attitudes of health care providers (Johnson et al, 2021; Mandell et al, 2007; Mandell et al, 2009; Montes & Halterman, 2011; Obeid et al, 2021). With regard to services early in life, research from early intervention shows that Black toddlers with autism must show increased delays as compared to White toddlers to receive early intervention services, and White children receive an increased dosage of early intervention services regardless of insurance (McManus et al, 2020).…”

“…Systemic racism refers to norms, principles, and regulations that regulate behaviors of individuals and organizations to reinforce racial hierarchies and may be a primary underlying driver of health and developmental inequities in young children (e.g., Hardeman et al, 2022). The consideration of race in autism research must be contextualized within the structures and powers that perpetuate racism (Johnson et al, 2021), and racism within social structures, including contexts of research, must be at the forefront of discussions about health inequities. One factor that perpetuates health inequities among autistic youth is the under-representation of historically marginalized racial and ethnic groups in research, which creates a critical gap in knowledge (Botha et al, 2021; Bottema-Beutel et al, 2020; Maye et al, 2022; Vivanti, 2020).…”

Advancing Anti-Racism and Anti-Ableism in Transition: Equity-Oriented Indicators for Research

“…There is work in multiple fields, including the intellectual disability and autism field, to create space for the inclusion of disabled voices in all phases of research and the dissemination and implementation of research findings (Ahlers et al, 2021;Barnes, 2002;Bigby et al, 2014;Jivraj et al, 2014;Nicolaidis et al, 2019;Schwartz et al, 2020). However, greater focus needs to be placed on integrating intersectionality into these approaches and focusing on the multiple forms of marginalization that are embedded in systems and power structures (Annamma et al, 2018;Johnson et al, 2021) in transition research. Furthermore, researchers must engage in an ongoing process of evaluating the composition of their research teams, how funding is used to support and engage populations being researched, how research teams are learning and growing in their application of anti-ableist and anti-racist approaches.…”

“…We encourage more leadership and pathways to leadership in research, teaching, and practice for racially and ethnically marginalized scholars with disabilities. Doing so does not remove the burden from the dominant culture to challenge racist and ableist structures in research, but instead can allow for race-conscious ways of constructing, analyzing, interpreting, and disseminating transition research (Johnson et al, 2021).…”

Narrative Theater to Examine and Mitigate Anti-Black Racism Within Occupational Therapy

“…In other words, racism in the field can be addressed through a collective willingness to interrogate how occupation functions as a site and perpetuator of racism. An examination of the inherent role of anti-Black racism in our health and social systems, including the rhetorical investment in diversity, equity, and inclusion by professional associations, is critical ( Johnson et al, 2021 ; Johnson & Lavalley, 2020 ; Lavalley & Johnson, 2020 ).…”