Invisible women: unpacking the erasure of Native American women with intellectual and/or developmental disabilities in health surveillance

Public health authorities recognize the need for more robust data systems to characterize health inequities, particularly among those with intersectional identities (National Center for Health Statistics, 2023). Currently, it is difficult to describe the health outcomes of Native American women with intellectual and/or developmental disabilities (I/DD), a population for whom key demographic information is unavailable. In this qualitative study, we interviewed 11 experts to understand why this population is not represented in mainstream health surveillance. The findings indicate that the visibility of Native American women with I/DD is influenced by both the institutions that shape data collection and the forms of data that are prioritized in health surveillance. Interview participants highlighted the disability service system and Tribal Nations as important gatekeepers of health data, while pointing out structural constraints that prevent these institutions from meeting the data needs of their constituents. Moreover, participants suggested that Western data systems, which prioritize deficit-based models of disability and rely on quantitative methodology, misrepresent people with disabilities and fail to acknowledge Indigenous ways of knowing. Interviews revealed several pathways to improving data equity, beginning with greater representation of Native American people and people with I/DD in institutions that govern health surveillance.