In our paper, published in the Journal of Medical Ethics, we argue that the health research community must urgently confront a gaping omission - the absence of disabled researchers from within its own ranks. This exclusion, we contend, constitutes a form of epistemic injustice. Without the voices of disabled scholars at the table, how can we claim to fully understand, let alone solve, the very issues that affect them?
Epistemic injustice, a term first introduced by Miranda Fricker (2007), refers to a wrong done to someone in their capacity as a knower - denial of credibility or the opportunity to contribute knowledge. When disabled people are systemically excluded from academic research, their perspectives, insights, and lived experiences are undervalued or erased entirely. This leads to skewed understandings of disability and results in research, policy, and clinical practice that fail to capture the complexity of disabled lives.
The lack of representation is not accidental. Across the UK academy, structural and attitudinal barriers persist: inaccessible environments, discriminatory hiring practices, and a pervasive lack of institutional support. The “pipeline” for aspiring disabled health researchers is fractured at every level, from education through to recruitment, career progression, and funding. Often, disabled individuals must fight battles on multiple fronts just to gain access to a field that should be enriched by their insight.
We believe this silence has serious consequences. Disabled people are routinely positioned as objects of study, but rarely as agents of research. Their lived expertise is essential, not optional. Research that is truly inclusive and ethically grounded must involve those with direct experience of the issues at hand. Anything less reinforces the very inequalities we purport to address.
What needs to be done?
We also call on funders and policymakers to recognise the urgency of this issue. Resources should be directed towards diversifying the research community including supporting disabled-led research and scholarship that challenges dominant, often medicalised, narratives of disability.
We must fix the pipeline - not only to advance equity, but because the future of health research, and the well-being of the most overlooked population in society, depends on it.
Charlotte Blease (PhD) is an Associate Professor at Uppsala University. She is a health informaticist whose research spans philosophy, psychology, cognitive science and medical humanities. She is co-author of The Nocebo Effect: When Words Make You Sick. More about her research can be found here.
