ELSIcon2022 Paper: Reproductive Concerns of Disabled Women: Whose Definitions of Disability are We Embracing?

ELSIcon2022 • Paper • June 3, 2022

Presented by: Dana Ernst • Co-Authors: Laren Clark, Sara Simonsen, Jacqueline Kent-Marvick, Elinor Ochs • Special thanks: James Tabery, Rebecca Anderson

Epidemiological studies and medical research detail the poor reproductive outcomes and health disparities among disabled women. This paper presents findings from a multi-year study on the reproductive health of disabled women with significant implications for greater equity and inclusion for disabled populations in ELSI research.

The mixed-methods study included a biomedical health survey and semi-structured interview. For those who self-identify as women and disabled, we asked, what are their reproductive concerns and how do these configure their lives? Through personal narratives, the women guided us through what we call ‘body events’ – significant life occurrences subjectively imbued with affective, cognitive, and moral meaning. Narrative analysis and diagrammatic visual representation of each woman’s personal narrative question assumptions about disability and the relationship of disability and reproductive life. To have relied on survey data alone would have likely prevented the researchers from realizing that the most poignant concerns for disabled women do not always correspond with the lists of disabling conditions commonly used in medical research and in health care practice. This study questions the definition of ‘disability’ in standard surveys and as stipulated in eligibility requirements for social programs and services.

The team’s analysis of the women’s narratives exposes the unconscious ableism regarding research in disability. Methodologies which listen to and center the voices of disabled people are critically important. We propose ways forward for equity and justice in research practice regarding centering disabled experiences, inclusion of disabled researchers, and viewing participants with disabilities as experts in their own condition.