Dr Jennifer Leigh is a Senior Lecturer in Higher Education and Academic Practice at the University of Kent. She has written on various aspects of marginalisation in academia and STEM, and creative, reflective, and embodied research methods. She is co-editor of the 2020 book Ableism in Academia, which you can download for free here. Dr Elliott Spaeth is a Lecturer in Academic and Digital Development at the University of Glasgow. He is trans, disabled, and neurodivergent.
According to the Office for National Statistics, there were 14.2 million disabled (or chronically ill) people aged 16 – 65 in the UK in 2021 – that’s around a third of the working-age population. This figure was an increase of 1.2 million since before the pandemic, which isn’t surprising when we consider increasing cases of mental ill health, and long covid, as well as delays in assessing and treating ongoing conditions due to cancellation of appointments for medical care and treatment. As such, it is very likely you will (or you already do) supervise disabled or chronically ill PGRs.
What is disability?
According to the Equality Act (2010), you are considered disabled if you have a condition that impacts ‘substantially’ on your day-to-day life, and which has lasted (or is expected to last) at least 12 months. Anyone can become disabled or chronically ill at any time. You can be born with a condition, and you can also acquire illness or disability. Neurodivergences, such as ADHD, Autism, Epilepsy, and Dyslexia, can be considered disabilities (although not everyone who is neurodivergent identifies as disabled), and while some may be diagnosed in childhood, increasingly (particularly with those who were AFAB) they are diagnosed in later life.
Many neurodivergent, disabled, or chronically ill people do not have a diagnosis at all, making it difficult for them to access treatment or to request changes that might help them in work or study. This is due to a lack of funding allocated to understanding conditions that affect marginalised communities (or how conditions might present differently for those people), a lack of commitment to incorporating understanding (where it does exist) into practice and policy, and an increased likelihood that marginalised people’s reported symptoms will be dismissed or considered less serious.
There are two main models that are represent the dominant ways we think about disability, and which model we subscribe to, has an impact on how supportive we are to our disabled and chronically ill PGRs.
The medical model views disability as being caused by an impairment within the individual. As an example, let us consider access to a library: A wheelchair user would be considered disabled because they cannot walk up the stairs and enter the building, or reach to books on a higher shelf. An autistic person might be considered disabled because they find the sensory environment overwhelming. As such, the medical model is deficit-based, positioning disabled people as having something wrong with them.
In contrast, the social model of disability, developed by Oliver, views disability as often (although not always) arising from unsuitable environments. In the examples above, both the wheelchair user and autistic person are held back by environments that were designed with the assumption that those environments would not be used by people like them. The wheelchair user is disabled if the environment does not have adequate lifts, ramps, doors that open automatically and have enough clearance for a wheelchair to go through, etc. The autistic person in the example above is disabled only when the environment doesn’t have quiet spaces (although not all autistic people will share this need).
How do we understand disability?
The main approach associated with the medical model of disability is that of ‘reasonable adjustments’, also referred to as ‘accommodations’. These are individual changes made to reduce barriers for a student or colleague and can be agreed directly between PGR and supervisor, or facilitated through the Disability Service. Examples you might be familiar with are extra time in exams, or permission to audio record lectures, although these examples are generally less relevant in a PGR context and only help in relation to certain needs.
Reasonable adjustments (if needed) are an absolute minimum requirement of a supportive environment, but they still position the ‘problem’ as being within the person in question and this system puts the PGR in the position of having to share information about their condition.
It requires them to justify their needs to us, an authority figure, which can be difficult, and is exacerbated when working with an unsupportive or less-aware supervisor. We might expect proportions of people disclosing or declaring a disability within HE to reflect that within the wider society, however this is not the case. We ask, why might this be?
First, people may simply not want to share the details of their disability (if they even have a diagnosis, which they might not, as discussed earlier).
Second, consider the language – the words ‘disclose’ or ‘declare’ tend to describe things that might be shameful, or illicit, which reflects the stigma associated with disability.
And third, coming to terms with a new illness or disability, or the extent to which a disability impacts your day-to-day life is a journey, and it can take a long time to accept that you may never go back to the life you had before.
In addition, telling others about a disability always comes with the risk that the person you tell may not believe you truly have the condition, or believe that the condition is ‘worthy’ of support. This can be particularly true of disabilities and illnesses that fluctuate. Dealing with questions and perceptions of this kind can be incredibly painful and invalidating.
There are disciplinary differences here as well – subjects that have a higher gender imbalance also have lower rates of disclosure. We have to recognise that disability, just like every other protected characteristic, is intersectional, meaning that people who are marginalised in multiple ways, are likely to experience additional challenges.
As supervisors, we need to recognise that many more of our PGRs are likely to be silently dealing with a chronic illness, neurodivergence, or disability than those who declare it. Although there isn’t one simple way forward, we would recommend taking an approach that proactively considers the needs of your researchers, rather than only focusing on those who have felt comfortable sharing details of a disability or chronic illness with you. This proactive approach is more aligned with the social model of disability, in that it involves considering how the environment may be disabling your students, and what you can do to change that. In an educational context, this approach is referred to as Universal Design for Learning. This book, (very annoyingly not available as an ebook other than via Kindle), discusses this approach in depth, in relation to Higher Education.
What can we do to create suitable environments for our disabled PGRs?
There are several elements to creating an enabling environment, but the first should be understanding that disabled and chronically ill students are the experts of their own conditions and lived experience, and that your role is not to doubt them or make them prove their needs to you. Even comments such as “but you don’t LOOK autistic/disabled/etc”, which may be intended as compliments, are hurtful, both because (1) they suggest the person in question is wrong, and (2) they reinforce stereotypes and imply that being autistic/disabled/etc is negative.
The next step will involve rethinking your expectations about how PGR students ‘should’ behave, and whether your existing rules are serving the function of promoting research excellence and supporting PGRs development – see this companion post on how assumptions might accidentally create unnecessary barriers.
The third step is to find out more about the different ways of working available, and to start thinking about how you can adapt processes to allow people to engage in the ways that work for them. Consult your research teams, talk confidentially to other colleagues about how they support disabled and chronically ill researchers, or find online resources to help you be creative.