Background on UK disability legislation

Under Section 20 of the UK Equality Act 2010, higher education providers in England, Scotland and Wales are legally bound to provide ‘reasonable adjustments’ for people with disabilities who require them.40 Section 6 of the Act defines disability as the experience of an impairment that has a ‘substantial’, long-term adverse impact on a person’s ability to engage in daily activities. Section 20 clarifies that the duty to make reasonable adjustments exists where any provisions or criteria offered or required by education providers place disabled people at a ‘substantial’ disadvantage relative to non-disabled people.40

Health scholars have identified vagueness and therefore ambiguities in how qualifiers such as ‘substantial’ and ‘reasonable’ are interpreted.41 Moreover, it has been contended that ‘reasonable adjustments’ rely on a non-disabled and potentially ableist perspective of what is reasonable, while also placing the burden to prove eligibility for adjustments onto disabled people, thus individualising the structural problem of normalised discrimination.42 As previously outlined, ELC are poorly recognised as forms of disability, and research demonstrates that people living with diagnoses that can be positioned as ELC struggle to gain the recognition necessary to obtain reasonable adjustments.32–34 43 Section 19 of the Equality Act 2010 explains that indirect discrimination occurs when one party applies a provision, criterion or practice that puts a person with a protected characteristic (such as disability) at a substantial disadvantage when compared with people without that protected characteristic.40 44

The Equality Act allows for scenarios where discrimination may be justified (known as ‘objective justification’) in cases where providers can demonstrate that their policies or provisions constitute ‘a proportionate means of achieving a legitimate aim’.40 Among the considerations about what might constitute a proportionate means are the size of the organisation, the practicalities and costs involved.44 However, these are seldom explicitly articulated as a justification for the status quo, and the resulting ambiguities (which ultimately can only be resolved by tribunal or court) mean—as we will next find out—that disability discrimination may inadvertently become normalised.

Evidence of strategies of exclusion

Despite an ostensible increase in DEI policies within the academy,45 46 there exists considerable literature demonstrating experiences of physical and attitudinal barriers to participation in academic research among disabled students and academics, including those with diagnoses that sit within the ELC umbrella.29 31–34 43 46 There is also evidence that disability-related inequities in higher education persist in terms of degree completion, degree attainment and progression onto skilled employment or postgraduate study, within and beyond STEM.21 22 47 48 The experience of JH is that such disparities are deeply entwined with physical and attitudinal barriers to full epistemic participation within the academy. Drawing on research findings and situating these against the lived experience of JH, we now explore evidence of strategies of exclusion for disabled researchers that, we argue, could contribute to epistemic injustice.

Studies that reveal barriers to academic participation, among people with ELC and disabled people more broadly, focus on two principal scenarios: (1) experiences of higher education students who can attend ‘on campus’ but require accommodations,29 33 43 and (2) experiences of academics (from PhD study level upwards) navigating workplace barriers pertaining to reasonable adjustments, employment and career progression opportunities.31 34 46 49 Where these barriers occur, we suggest they point to evidence of hermeneutical injustice that may also be underpinned by testimonial injustice. Indeed, chief among themes across such literature is that of ableism, understood as ‘a cultural imaginary and social order centred around the idealised able-bodied and -minded citizen who is self-sufficient, self-governing and autonomous’50; this ‘social order’ is founded on global prejudices about disabled bodies and minds.50 Reports of academic ableism are evidenced as manifesting through, inter alia, a lack of accessible buildings and equipment, institutional inability or unwillingness to facilitate disability-related accommodations, and lack of familiarity (or consensus) among faculty and non-academic staff as to what constitutes disability-specific DEI practice and policy.31 43 45 46 Additionally, increasing literature probes the creeping neoliberalisation of academia, which is contended to intersect with and perpetuate ableism, most notably though institutional normalisation of competition and hyperproductivity as a reflection of ‘excellence’.31 46 Relatedly, and notably among students or academics with health conditions that can be positioned as ELC, the question of whether or how to disclose disability and implications of (non)disclosure is receiving critical attention.21 29 31 33 34 43

Furthermore, as previously outlined, scarce attention has been paid to ELC explicitly, especially among people with ELC who are largely or completely confined to the home, yet may wish to continue within or enter academic spaces and thus require remote access. JH’s experience is that some of these people are not only marginalised within the academy but may be excluded from accessing it altogether. This, it would appear, is owing to a failure of institutions to facilitate remote access programmes. Here again, to understand how strategies of exclusion operate, we must turn to legal considerations. In terms of what might be considered ‘reasonable’, the willingness of research institutes to extend remote access to students and faculty during successive lockdowns owing to the SARS-CoV-2 pandemic31 51 52 suggests that failure to extend such accommodations to disabled people who depend on them, and especially where research can be conducted from home, would be difficult to justify.

Yet, such remote access tends to be considered at best an ‘adjustment’ to preferred or ‘normal’ (non-disabled) practice, and provision appears to be patchy and poorly signposted; lack of clarity over which research institutes offer remote delivery programmes may thus constitute the initial hurdle. Some universities appear to offer remote PhDs within some disciplines but not within others, and the exclusions do not appear to be related to pragmatics such as requiring laboratory access. For example, according to JH’s enquiries, and information received, one UK research institute and member of the Russell Group (representing UK leading research-intensive institutions) offered distance learning PhD programmes in 2021 and 2022 within psychology, but not within sociology. For added context, JH’s research interests are interdisciplinary but primarily straddle disability studies (typically sited within academic schools of sociology and faculties of social sciences) and psychology. This is with a view to researching disability-affirmative, socioculturally and politically cognisant approaches to psychotherapy practice and policy. However, in academic fora, psychology and psychotherapy (often aligned with health sciences faculties) foreground heavily medicalised understandings of disability, and JH’s experience has been that psychology departments have not been open minded or welcoming vis-à-vis the prospect of integrating sociocultural and political perspectives, as per disability studies. In practice, this has meant that JH’s endeavours to find an accessible PhD have been limited to the purview of sociology. These disciplinary exclusions arguably represent the legacy of the reluctance of psychology, wider health sciences and life sciences to embrace disability in all its diversity.21–23 50

In response to an enquiry as to why the above institution did not offer remote access PhDs in disability studies/sociology, the postgraduate admissions team informed JH: ‘All our PhD students undertake mandatory units which are only delivered in person’ (email, 10 February 2022). It is unclear how these mandatory units differ from units offered on remote access programmes. Indeed, a recurring motif throughout JH’s enquiries across various UK institutions is that further probing about potentially exclusionary policies results in ambiguous responses, or no response at all. Reasons for lack of remote access offered by other institutions included a mandatory requirement for direct (on-campus) contact with the PhD supervisor or the need to participate in onboarding sessions face to face on campus. However, lack of justification about why this was necessary was not offered.

Again, it might be expected that institutional willingness to provide remote access during lockdowns would serve as a precedent for remote access to become the norm rather than the exception.46 However, in response to JH challenging lack of remote access provision on these grounds, the reply from the admissions team at another Russell Group university was as follows:

While during the last year some teaching and supervision has taken place online this is a temporary measure and not part of a formal distance learning course. Some supervision and teaching is also now taking place back on campus in person again. All ‘on campus’ programmes are subject to government mandated attendance requirements. (email, 28 January 2022)

When JH requested more details regarding these government-mandated attendance requirements, the admissions team declared that the enquiry would be passed onto another point of contact. Over 2 years later, no further details have been forthcoming. Ad hoc adjustments pertaining to remote delivery might be possible at some institutions, but it seems conceivable that these may be dependent on the supervisor’s individual preferences rather than policy, perhaps permitting prejudicial judgements about disability to interfere with decision-making.

Furthermore, for those fortunate enough to find a supervisor willing to ‘accommodate’ them, additional strategies of exclusion arise pertaining to funding via doctoral training programme (DTP) and research council consortiums. For example, a representative of the UK White Rose social sciences DTP53 (covering seven UK higher education institutions in Northern England) informed JH that, in accordance with Economic and Social Research Council (ESRC) policy, disabled students confined to the home are not eligible to be considered for funding. Further digging revealed that this policy is not limited to the White Rose DTP; for example, the UK Midlands Graduate School DTP,54 covering a further eight UK higher education institutions, lists the same exclusion criteria on its website at time of writing. When JH challenged the White Rose DTP’s policy on grounds of (dis)ableism, a representative forwarded the following response from the ESRC:

UKRI [UK Research and Innovation, non-departmental body of the UK government responsible for funding research] terms and conditions confirm that UKRI funded students must live within a reasonable travel time of their Research Organisation (RO) or collaborative organisation to ensure that they are able to maintain regular contact with their department and their supervisor. This should also ensure that the student receives the full support, mentoring, access to a broad range of training and skill development activities available at their RO, as well as access to the resources and facilities required to complete their research successfully and to a high standard. Our expectation also reflects that we want to avoid students studying in isolation […] (email, 15 December 2022)

In light of the considerable evidence that scholars across many disciplines can work remotely, the assumption that disabled people cannot research to a ‘high standard’ while confined to the home is problematic. Additionally, the reasoning around avoiding isolation, while likely well intended, does not hold much weight from JH’s standpoint. Many disabled people frequently experience significant physical and emotional isolation through navigating a (dis)ableist society and develop numerous strategies (including use of remote access technology) to mitigate this; in this respect, they may even be considered ‘experts by experience’ in resiliently striving to manage isolation.51 55 56 Social media, for example, is used by many disabled people to connect with others, share ideas on managing health conditions and disability discrimination and develop collective advocacy and activism initiatives.55 Refusing to offer remote access on (partial) grounds that disabled people may not be able to cope with the ensuing isolation risks infantilising people with disabilities, and withholds one of the very tools that can facilitate inclusion and thus counter isolation.

Moreover, literature suggests that being on campus does not necessarily prevent disabled people from experiencing or overcoming isolation, notably emotional isolation or alienation arising from lack of accommodations and thus feeling ‘unwelcome’ or ‘less than’.33 46 The ESRC’s reasoning would therefore appear to arise from a non-disabled perspective (or at least, a perspective not attuned to certain facets of disability culture). Funding-related barriers are aggravated by the general lack of other funding opportunities for disabled students. For example, while scholarships for other under-represented groups are justly offered across many institutions,57–59 often with emphasis on recruiting traditionally marginalised candidates, similar much-needed initiatives for people disadvantaged through disability are conspicuously absent. This is particularly important to address since disability and economic disadvantage are entwined in a complex manner,2 11 and because, as previously noted, disability is intersected with other forms of social (dis)advantage.19 21 24 28

It is worth emphasising that the exclusionary practices pertaining to health-related research, as discussed here, may be more pervasive and entrenched than we have presented. Discussing the impact of academic ableism, Brown46 notes that disability disclosure rates, though on the increase in undergraduate admissions, drop between undergraduate and academic employment level. Brown identifies two factors that might explain this: (a) disabled academics may avoid disclosure for fear that declaring disability would impede their career, and (b) disabled students may simply drop out of the academy. As the foregoing demonstrates, JH’s experience suggests that the second factor may be entwined with disabled students being excluded from the academy because they cannot meet ‘on campus’ attendance requirements. It is currently unknown how many fledgling academics with disabilities have been excluded from the academy owing to discriminatory policies and academic culture, but it seems likely that JH’s case is not exceptional. Recent research recounts that some disabled faculty are being refused remote working arrangements as lockdown accommodations begin to revert to ‘normal’ practice.60 For disabled researchers in perpetual lockdown, such refusals might result in experiences such as those detailed here remaining unknown and thus unaddressed.

In summary, where a ‘leaky pipeline’ exists vis-à-vis academic representation of some historically oppressed groups,61 62 it appears that there exists no pipeline at all for a subgroup of disabled people who cannot leave their homes due to a combination of body/mind restrictions and lack of social provisions such as healthcare. Yet, disadvantages created by refusing remote access accommodations to scholars with disabilities who are confined to the home are certainly substantial. Beyond the potential loss to collective wisdom, the hermeneutical injustice perpetuated by barriers to education and employment among disabled people results in what Kidd and Carel describe as a ‘double injury’,39 since it leads to significant ramifications for the psychosocial well-being and financial security of those excluded.