Developing and Validating Measures of Structural Ableism to Improve Health Outcomes for the Disability Community: Protocol for a Mixed Methods Study

TL;DR

This study aims to develop and validate measures of structural ableism to better understand and address health disparities in the disability community.

Contribution

The study introduces a novel mixed-methods approach to measure structural ableism, a previously unquantified form of structural oppression.

Findings

The project will create individual and community-level measures of structural ableism through a three-phase mixed-methods approach.

The study emphasizes community engagement and inclusion of diverse disability perspectives across all research phases.

Initial progress includes analyzing over 50 texts to characterize structural ableism, with full measures expected by 2029.

Abstract

Structural ableism, defined as the processes, policies, and institutions that privilege able-bodied people over disabled people, is a root cause of health inequalities faced by the disability community. Unlike other forms of structural oppression, there are currently no adequate measurements for structural ableism and its impacts. Therefore, a necessary first step to addressing health inequities that impact the disability community is to create validated measures of structural ableism.

This paper outlines the methods of an ongoing project that aims to develop and validate measures of structural ableism. The resulting measures will facilitate the identification of relationships between structural ableism and health outcomes at both an individual and community level.

This project will take place across 3 phases. In Phase I, we will characterize the multiple factors that comprise the construct of structural ableism. We will begin by analyzing texts that discuss historical events, ideologies, and the lived experiences of disabled people to inform our understanding of contemporary dimensions of structural ableism. Simultaneously, key informant interviews with advocates and activists from the disability rights and disability justice movements will be conducted to further characterize the dimensions of structural ableism. In Phase II, the findings of Phase I will be used to inform the creation of an individual-level measure of structural ableism. Phase III will result in community-level measures of structural ableism, which will be developed using community-engagement studios with members of the disability community and publicly available datasets. This phase will build on the findings of the first 2 phases. Our methods purposefully include disabled people across all phases of this work, with a focus on maximizing the diversity of disability perspectives by including people across disability types and intersecting identities (eg, race and ethnicity, gender identity, geographic location, and other identities and demographics). Most importantly, our approach is deeply community-informed, drawing on multiple community partnerships from local and national organizations, 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.

This project was funded in August of 2024. As of October 2025, our team has read more than 50 texts as part of our historical and policy analysis of the factors that characterize structural ableism. We plan to complete our characterization of structural ableism in the spring of 2026, with individual-level measures of structural ableism being developed by the Winter of 2028 and community-level measures created by the Winter of 2029.

The measures developed by this work will lay the foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism, which should be cocreated with the disability community.

DERR1-10.2196/86976

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