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Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research
  1. Joanne Hunt1,
  2. Charlotte Blease1,2
  1. 1Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden
  2. 2Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Joanne Hunt, Department of Women's and Children's Health, Uppsala University, Uppsala 751 05, Sweden; joanne.hunt{at}uu.se

Abstract

People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as ‘strategies of exclusion’. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.

  • Disabled Persons
  • Ethics
  • Philosophy
  • Quality of Health Care
  • Policy

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

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Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

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Footnotes

  • X @JoElizaHunt, @crblease

  • JH and CB contributed equally.

  • Contributors Both authors contributed equally to all aspects of the paper. As corresponding author, JH acts as guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.