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

This study explores the challenges, opportunities, and transformative potential of researchers with 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.