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

By
  • Rupa S Valdez ,
  • Bonnielin K Swenor ,
  • Franz Castro ,
  • Caroline Cerilli ,
  • Bailey A Middleton ,
  • Kara Fitzgibbon ,
  • Ashley Shew ,
  • Varshini Varadaraj ,
  • Hari Srinivasan ,
  • Diana Cejas

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.

Measuring structural ableism is essential to creating interventions to slow and prevent it, ultimately improving health outcomes for disabled people by addressing the systems that create barriers to equitable health outcomes. Health inequities that impact disabled people are too often attributed to disabled
people themselves and not the environment and contexts in which they live. Yet, the experience of disability is multidimensional and contextual: it is social, cultural, and political, and is shaped by interactions with the environment.

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 create a foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism. These interventions should be co-created with the disability community.

Citation: Valdez RS, Swenor BK, Castro F, Cerilli C, Middleton BA, Fitzgibbon KS, Shew A, Varadaraj V, Srinivasan H, Cejas D. Developing and Validating Measures of Structural Ableism to Improve Health Outcomes for the Disability Community: Protocol for a Mixed Methods Study. JMIR Res Protoc. 2026 Mar 13;15:e86976. doi: 10.2196/86976. PMID: 41824953; PMCID: PMC13032091.

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