Skip to main content
Series
The 5th ELSI Congress - ELSIcon2022

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

Type
Conference

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.

Tags

Keywords
Live
Paper
Language and categorization
reproductive genetics

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

Related Videos