Toward an inclusive (crip)epistemology: Exploring the experiences of researchers with lived experience of disability in health research

lived experience of disability in health research. While experiential knowledge is increasingly valued in this field, little attention has been paid to those who integrate it as principal investigators or scholars. Drawing on feminist standpoint theory and cripistemologies, this qualitative, participatory study engaged 25 researchers and allies in a design-thinking workshop and follow-up questionnaire to explore challenges, opportunities and solutions to further deploying lived experience of disability in health research. Analysis revealed that lived experience of disability is frequently devalued in academia, leaving many participants hesitant to disclose their identities, fearing of being dismissed as biased. At the same time, participants emphasized that this proximity to lived realities offers a unique advantage point for innovation: it enables the identification of gaps in literature, the formulation of new research questions, and the development of more inclusive methodologies. Also, proximity to the research topic creates a complex interplay of emotional burden and deep motivation. For many, engaging in this work was profoundly empowering, transforming personal experience into a source of knowledge production, community care, and social change. Findings underscore the need for cultural shifts to recognize lived experience of disability as having the potential to be scientifically rigorous, develop adapted methodological frameworks, and create inclusive academic environments. Integrating researchers with lived experience of disability represents not only a question of social justice, but also fosters opportunities to enrich scientific inquiry, challenge ableist productivity norms, and reimagine academic time through crip and slow scholarship.

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Publication Details

Journal
Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine
Published
2026-06-26
DOI
https://doi.org/10.1177/13634593261455074
Primary Topic
Disability Rights and Representation
Type
article
Field-Weighted Citation Impact
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article

Toward an inclusive (crip)epistemology: Exploring the experiences of researchers with lived experience of disability in health research

Catherine Côté, Joanie Thériault, Gabrielle Leblanc-Huard, Audrey L’Éspérance
Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine
Disability Rights and Representation
article

Toward an inclusive (crip)epistemology: Exploring the experiences of researchers with lived experience of disability in health research

Catherine Côté, Joanie Thériault, Gabrielle Leblanc-Huard, Audrey L’Éspérance
article en

Abstract

lived experience of disability in health research. While experiential knowledge is increasingly valued in this field, little attention has been paid to those who integrate it as principal investigators or scholars. Drawing on feminist standpoint theory and cripistemologies, this qualitative, participatory study engaged 25 researchers and allies in a design-thinking workshop and follow-up questionnaire to explore challenges, opportunities and solutions to further deploying lived experience of disability in health research. Analysis revealed that lived experience of disability is frequently devalued in academia, leaving many participants hesitant to disclose their identities, fearing of being dismissed as biased. At the same time, participants emphasized that this proximity to lived realities offers a unique advantage point for innovation: it enables the identification of gaps in literature, the formulation of new research questions, and the development of more inclusive methodologies. Also, proximity to the research topic creates a complex interplay of emotional burden and deep motivation. For many, engaging in this work was profoundly empowering, transforming personal experience into a source of knowledge production, community care, and social change. Findings underscore the need for cultural shifts to recognize lived experience of disability as having the potential to be scientifically rigorous, develop adapted methodological frameworks, and create inclusive academic environments. Integrating researchers with lived experience of disability represents not only a question of social justice, but also fosters opportunities to enrich scientific inquiry, challenge ableist productivity norms, and reimagine academic time through crip and slow scholarship.

Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine
École Nationale d'Administration Publique (CA), Université Laval (CA), Université du Québec à Trois-Rivières (CA), Université de Montréal (CA)
Decent work and economic growth
Openalex Percentile: Top 5%
Disability Rights and Representation
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