Being the Disabled™ PhD

As universities promote decolonising their curriculums, breaking down barriers for LGBTQ+ teens, and scholarships for 'marginalised students,' it appears disability is consistently missing. Statistics suggest that only 21.8% of disabled people have a degree compared to 30.8% of non-disabled people, a gap that remained consistent between 2013-2019 (Office for National Statistics, 2019). We have observed how universities are investing in increasing 'access' to higher education, but as disabled early career researchers (ECRs) are left wondering why key lessons from the pandemic are not being learned. Why are universities seemingly rolling back access for those they deem 'vulnerable', rather than finding ways to make education accessible for all?

Here, we explore this issue in the context of reasonable adjustments and virtual spaces, and why we need to keep moving forwards with accessibility.

What do we mean by 'disabled'?

Rhetoric around disability within academic spaces tends to state 'disability is more than wheelchairs', whilst nevertheless equating all disabilities and needs for disabled students to the needs of wheelchair users. Indeed, Elliot and Wilson (2008) examined experiences of those with 'hidden disabilities' within the academy, finding that this group often do not identify with the term 'disabled', leading to not being effectively supported. Both authors live in multi-marginalised bodies, with one or both having or being:

• Black mixed race
• Non-binary
• Queer
• Neurodivergent
• First generation university student
• Having multiple physical disabilities
• Having multiple mental illnesses
• Using multiple mobility aids including a wheelchair

Are you uncomfortable that we listed them? Our lived experience is never holistically viewed. We are not intersectional people but a list of issues to be cherry picked when adjustments are required. We find ourselves balancing our most significant needs against the 'feasibility' for the university to actually make necessary changes, perpetuating the idea that we are a list of problems to be managed or fixed.

Putting the 'reasonable' in 'reasonable adjustments'

Reasonable adjustments are enshrined in law (e.g., Equality Act 2010, Special Educational Needs and Disabilities Act, 2001) but their implementation is often open to interpretation. In our experience, the closer you are to having a rare or heavily stigmatised illness, the worse your experience with accessing reasonable adjustments or Disabled Students Allowance (DSA). Whether due to lack of experience or compassion from assessors and universities, you often hit brick walls when seeking out adjustments for anything which is not common or easily understood. What counts as a 'reasonable' adjustment is something flexible, changeable, and dependent on each university, with the pandemic significantly influencing what is considered possible.

Our lived experience is never holistically viewed. We are not intersectional people but a list of issues to be cherry picked when adjustments are required.

Feeling like a burden and not seeking help are common issues faced by disabled ECRs. Notably, the recent report into the DSA suggests only 29% of students known to have a disability applied for the funding. Suddenly it is not about receiving support to 'level the playing field' with other ECRs, it is a fight for services and support to be put in place, and subsequently upheld rather than ignored. The risk for disabled academics is two-fold and unwinnable; (1) either we do not fight for our adjustments and are kept out of full academic existence due to barriers, or (2) we do fight for our rights and risk being seen as demanding or a burden and thus sidelined from a full academic existence.   

Moving into a virtual space saw disabled ECRs able to access our places of study to the full extent for the first time. This virtual space saw the ivory tower open up to disabled people who can not 'play the game' in the expected way, giving access to the same academic experience our able peers had taken for granted. Suddenly we were able to have appointments with careers services, attend seminars in non-accessible locations, and regularly meet with colleagues. The pandemic created an environment for our access needs to be met: working from home, flexible deadlines, different types of assessments and submission methods, the list goes on.

However, watching universities suddenly become able to provide these adjustments and create a widely accessible educational experience, for both of us, felt viscerally like an act of violence after years of rejection, begging, and humiliation for having similar needs. It has left us wondering why disabled ECRs were not valued enough to have these needs met before the pandemic? And why, now we are in the 'post' pandemic, are we seeing our access diminished to something worse than it was before?

The virtual world: Sustainability and missed opportunity

The idea of moving into the online space has been debated for decades, with the overnight shift to online during the pandemic finally allowing access to spaces that were previously prohibited. Naturally this debate is more nuanced than online equates to 'disability friendly' and in our case was a double-edge sword: although being at home has been beneficial for some disabled academics, it does not negate the fact we are still disabled and additional adjustments may be needed.

Nonetheless, the online working environment opened doors for collaboration, discussion, and access that previously were inaccessible to disabled ECRs (and more widely, those with caring responsibilities, limited funding, etc.). That being said, perhaps the biggest issue with the online methods used was, rather than embracing the data from 30+ years of e-learning academia, the desire to keep things as close to normal as possible meant that digital spaces became a complex faux-reality. Nowhere is this more apparent than in the rules that were imposed during lockdown: do not eat on camera (but we will work through lunch); cameras must remain on at all times (how did business happen before video technology?); and, for those with young children, do not bring your child to the meeting (but where else will they go?). In creating barriers that were lacking in the real-world (ever had a sandwich in a meeting when the day was hectic?), suddenly new accessibility barriers were being built at a time when more open and flexible working methods were being praised and lauded.

What counts as a 'reasonable' adjustment is something flexible, changeable, and dependent on each university.

The request for the online world to remain and become as flexible and accessible as first touted would seem perfectly reasonable. Given the pandemic is still with us, the barriers which were there prior to Covid-19 remain. If we have learned anything as disabled ECRs, it is that 'reasonable' is a loaded, potentially harmful term, equipping those in the higher echelons of power to proclaim the return to normal and remove online access; the ideals that face-to-face is better and that to be fully present requires above all else to be physically present. Through forcing this faux-reality and not embracing the innovative nature of e-learning, we consider what we have dubbed the 'experimental phase' of virtual learning to be a failure – and to one of your authors, coming from an e-learning background (see Dewar, 2013), this failure was inevitable.

Rather than address the issues, this online 'experiment' is in danger of being relegated to the trash heap – and with it, those for whom it benefited.

Weaponising vulnerability and removing access

The future for disabled ECRs, therefore, appears somewhat bleak. We find universities weaponising vulnerability as a method of limiting our ability to be involved in academia. After two years of university education in the virtual space, the desperation to return to normal sees universities neglecting disabled ECR needs, instead using the pandemic as justification for us no longer being welcome.

A prime example of this is conferences and the power of the conference coffee break. Academic success is inherently tied to the networking that is done between conferences presentations; academic networking is vital for accessing new opportunities and furthering careers. For disabled ECRs, however, we often cannot use that time for networking; instead those coffee breaks are needed for catheter changes, being in a quiet space due to overstimulation, injecting medications, and similar. The pandemic changed this, for the first time allowing us to fully engage in all elements of conferences.

For any significant change to happen for disabled ECRs in academia, we need to completely shift our viewpoint.

Now we are 'post' pandemic, disabled ECRs are again being denied access to conferences: being told that mask wearing is non-compulsory, and that those worried should stay at home; that an accessible venue couldn't be found, but here is a Zoom link that has no one facilitating. We took a step forward and now we are taking two steps back, and the primary reason for this shift is the discourse of vulnerability that reared its head during the pandemic, and is now pervasive. An example of this is the return of excessively paternalistic language and thinking around disability, such as referring to us as 'vulnerable' as if every person was not somewhat vulnerable to Covid-19.

Transformation

As disabled ECRs, it is becoming increasingly difficult to hold the idea that universities are expanding access whilst they are actively limiting ours. As we watch departments celebrate staff getting knighthoods without acknowledging their long destructive relationship with colonialism, or set up LGBTQ+ networks while still celebrating homophobic and transphobic academics, we cannot continue to believe that universities as institutions are authentic in their desire to better include those with marginalised identities.

For any significant change to happen for disabled ECRs in academia, we need to completely shift our viewpoint. We need to step away from this elitist view of what the academy is, demolish the structural and ideological obstacles that the academy is built on, and actively promote attempts to implement an inclusive education reform agenda in higher education. We need to keep looking to the future, keep lessons learnt during the pandemic in mind, and consider the transformation that needs to happen in order to make academia truly accessible for all.

About the authors

Eleanor Dewar (they/them) is a PhD Candidate at the University of Kent and CEO of the disability charity BlueAssist UK Ltd. They are an interdisciplinary researcher with a diverse range of publications from transgender rights to the pedagogy of MOOCS. Currently they focus on neurodiversity, social care, gender and education.

Cassandra (Cassie) Lovelock (she/her) is a final year PhD student at the London School of Economics and Political Science. She works closely with NHSEI in the Adult Mental Health Team and within the NIHR RDS. Her research interests and academic career focus primarily on mental health policy, unpaid care, disability, and race.

Key sources

Dewar, E. (2013). MOOCs: Where technology meets pedagogy. The Head Foundation.

Elliot, T. & Wilson, C. (2008). The perceptions of students with hidden disabilities of their experiences during transition to higher education. Aim Higher East of England Research Project.

Office for National Statistics (2019). Disability and education, UK: 2019