Confronting ableism: Reflections on the ethical failings of academic health research

By Joanne Hunt and Charlotte Blease.

Health research, much like healthcare, is often plagued by persistent ableism. These two issues are likely connected.

Disabled people across the globe experience a multitude of institutional, physical and attitudinal barriers to healthcare. Beyond inaccessible clinical environments and equipment, people with disabilities are confronted with clinical ambivalence, discriminatory attitudes and lack of understanding toward disability.

Such barriers intersect with health and wider social disparities. For example, relative to non-disabled people, people with disabilities are at increased risk of physical and mental co-morbidities, report lower levels of wellbeing, and are more likely to die younger. Compounding matters, disabled people are also less likely to be employed than non-disabled people and earn less when in work, even though disability incurs higher living costs. Perhaps unsurprisingly, disabled people are more likely to live in poverty than their non-disabled counterparts. Addressing such disparities requires carefully focused research.

In this regard, disabled researchers are well-placed to understand how health policy and practice can further marginalise and disadvantage disabled people. Researchers with disabilities may be more willing and able to spot gaps in knowledge and to ask difficult questions that are necessary to effectuate change.

Yet, the same physical and attitudinal barriers confronting disabled people in the healthcare arena also exist in the academy. In fact, academic ableism appears to be particularly virulent in science, technology, engineering and maths (STEM) or STEM(H) – the latter explicitly acknowledging health research.

So, whilst disabled people must grapple with healthcare systems that disadvantage those in greatest need, researchers with first-hand experience of such disadvantage are marginalised from the very knowledge-producing arenas that would reap greatest collective benefit.

Moreover, as one of us (Jo) knows only too well, whilst a ‘leaky pipeline’ plagues minoritised groups in the health and wider scientific research arena, this pipeline is missing altogether for disabled people who are largely or entirely confined to the home.

Jo, who has a background in psychology and an interest in disability-affirmative healthcare, has been largely confined to the home in the UK for over a decade, interspersed with being confined to bed for weeks or months at a time. Her primary diagnoses – hypermobile Ehlers-Danlos syndrome (hEDS) and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) – not only mean that her daily activities are severely restricted, but that Jo must navigate a well-documented climate of disbelief vis-à-vis what have been termed energy limiting conditions. For example, Jo had to wait over thirty years for a diagnosis of hEDS, only to find that there are no established care pathways available to her, and that the onus is now on her to figure out how to navigate life with this condition.

Similar discriminatory landscapes extend to the academy, where Jo has struggled to find a PhD programme that can accommodate her need to conduct research via remote (online) access.

Yet, Jo’s case is one case among many. It can be viewed as merely a first symptom in a much larger epidemic of issues within healthcare. Despite society’s willingness to accommodate faculty and students during successive lockdowns via remote-working practices, some disabled faculty are being refused similar provisions as institutions revert to ‘normal’ – with an inevitable impact on disability-affirmative knowledge production.

In our new paper, we explore these exclusions and their ramifications through the lens of epistemic injustice, and suggest that academic policy and practice routinely subjects researchers with disabilities to harms in their capacity as ‘knowers’.

If we truly value diversity, equity and inclusion, and wish to make healthcare safer and more inclusive, then the academy must become more accessible. People with lived experience of illness can often identify how health policy and practice is failing patients and compounding disability, and often have well-considered ideas about how things could change for the better.

 

Paper title: Epistemic injustice, healthcare disparities and the missing pipeline: Reflections on the exclusion of disabled scholars from health research

Authors: Joanne Hunt and Charlotte Blease

Affiliations:

JH: Department of Women’s and Children’s Health, Uppsala University, Sweden.

CB: Department of Women’s and Children’s Health, Uppsala University, Sweden.
Department of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, US.

Competing interests: None

Social media accounts of post authors@JoElizaHunt   @crblease

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