Identifying and Measuring Domains of Structural Ableism to Advance Health Equity for the Disability Community

ABSTRACT Structural ableism, defined as the processes, policies, and institutions that privilege able-bodied people over disabled people, is a root cause of health inequities faced by the disability community. A necessary first step to addressing these disability health inequities is to create validated measures of structural ableism, which is the

goal of this five-year project. This project parallels foundational work across other forms of structural oppression, such as structural racism, classism, ageism, sexism, and heterosexism, and has three specific aims. Aim 1 will characterize the multiple factors that comprise the construct of structural ableism, which will improve our

understanding of the multidimensionality of structural ableism in ways that support measure development. This aim synthesizes historical, policy, and qualitative approaches, drawing on extant texts and key informant interviews. Aim 2 develops and validates an individual-level measure of structural ableism. In partnership with

the disability community, we will translate our findings from Aim 1 into a comprehensive measure of an individual’s experiences of discrimination across domains of structural ableism. This measure will facilitate the identification of relationships between structural ableism and health outcomes at an individual level. Aim 3

measures structural ableism at a community level using publicly available datasets and explores its relationships with health outcomes. We will use both participatory and statistical approaches to develop a cross-domain composite measure of structural ableism. This includes partnering with the disability community via community

engagement studios to inform this process. The resulting measure will help quantify the relationship between structural ableism and health outcomes at a community level. Across all three aims, we take an intersectional, interdisciplinary, and community-grounded approach. We purposefully include disabled people across all steps

and phases of this work, with a focus on maximizing the diversity of disability perspectives by including people across disability types and intersecting identities (e.g., race/ethnicity, gender identity, geographic location, and other identities and demographics). Our interdisciplinary team has expertise in disability studies, public health,

medicine, health policy, systems engineering, sociology, and cultural anthropology, and is led by two disabled PIs. Most importantly, our approach is deeply community-informed, drawing on multiple community partnerships from local and national organizations, and a diverse advisory committee of disabled activists, advocates, and

scholars, as well as researchers with expertise in developing measures of structural oppression, such as structural racism. By the end of the five-year project, this work will have established the characteristics of structural ableism, developed both an individual- and community-level measure of structural ableism, and used

these measures to explore relationships between structural ableism and health outcomes. Moreover, the measures developed during this project will lay the foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism, which should be co-created with the disability community.