Why Disabled Voices Must Be Central to Health Research

Disabled people can experience profound health disparities. Yet, while these inequities are well-documented, one key question remains under-asked: who is conducting the research meant to address them?

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?

The good news is that change is possible. Academic institutions must take deliberate steps to dismantle these barriers - not through tokenism, but through genuine structural reform. Accessibility must be embedded into the fabric of research environments. Recruitment strategies must be inclusive by design. Mentorship and funding opportunities must actively support disabled scholars.

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.

Ultimately, we wrote this paper not just to critique the status quo but to imagine a better future: one in which disabled scholars are central to health research, shaping agendas, asking the right questions, and leading the work that affects their own communities. When research includes disabled voices, it becomes more accurate, more ethical, and more impactful.

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.

Joanne Hunt (MSc, MBACP, GMBPsS) is a disabled researcher with a background in psychological therapies. Her interdisciplinary research is sited at the intersection of disability studies, psychology, feminist studies and ethics, and includes the biopolitics of medically and societally ‘contested’ chronic illness and related disability. More about her research can be found here.

For more on ableism in academia see Brown, N (2021) and Brown, N & Leigh, J (2020).