Academia needs to talk about ‘invisible’ disabilities

A few months ago, we advertised a conference that we intended to hold on the difficulties faced by those with chronic illness, disabilities and neurodiversity working in academia.

The event ran out of tickets within the first 24 hours. We doubled the capacity size of the event.

This time, tickets ran out within a week. We still have a waiting list, and now we have at least two institutions planning to run parallel events live-streaming presentations and talks from the day.

This level of interest indicates that we have hit on something that is relevant in academia today.

While academia prides itself on its inclusivity and diversity, many working in its pressured environment often wonder how far this spirit extends.

For example, those with so-called invisible disabilities – from neurodiversity issues such as dyslexia, dyspraxia and other learning difficulties, to those with often non-visible conditions, such as diabetes, fibromyalgia or multiple sclerosis  – often agonise over coming forward to declare these conditions to their employers.

Reporting a disability is problematic for many, explained Nicola Martin in a stimulus paper for the Leadership Foundation for Higher Education in March 2017. This is due to changing understandings and definitions of what might constitute a disability or protected characteristics, said Professor Martin, from London South Bank University. Many will have mixed feelings around the consequences of disclosure, she explained.

Those with a hidden or invisible disability or difference may seek a halfway house of disclosing a condition to colleagues or students, but not to the institution officially. Those with more visible disabilities may not disclose the extent to which they are affected.

For each individual, there may also be a journey towards acceptance of both the condition and the label and eventual formal disclosure. For example, some people might wonder if diabetes “counts” as a disability. Without access to medication the person would be impaired and unable to carry out day-to-day functions, but a person with diabetes is usually able to manage their condition, so they might not think of themselves as having a disability.

Issues of personal identity matter here. Do individuals see themselves as disabled or not? Is it OK to take up space as a disabled person with a hidden or invisible disability or chronic condition? Is something such as diabetes or MS a more acceptable hidden disability than mental health issues, chronic fatigue, neurodiversity or fibromyalgia?

And what about conditions that are variable, with good days and bad? Will colleagues believe that we are just making things up in order to get adjustments and have an “easier” life? We doubt that anyone who lives with any kind of disability, neurodiversity or chronic illness would say that their life is easy. This type of thinking and assumptions are forms of ableism.

Ableism is the pervasive normalisation of the academic workplace and other spaces that, along with other “isms” is often only visible to those who experience it.

We just don’t see discrimination or microaggressions unless they are aimed at us. Ableism is inherent and often internalised. It is a type of discrimination that is often overlooked, in part because of the stigma attached to disclosing disability. If we do not disclose, then we cannot expect reasonable adjustments and support.

But how easy is it to disclose a hidden or invisible disability or condition in an atmosphere of ableism? What happens when a disclosure is made?

Professor Martin wrote that “involvement in high-profile activities such as chairing disabled staff networks could be compromised by the risk associated with increased visibility”.

Even when writing a blog such as this, should we have to justify ourselves and declare our own differences in order to be taken seriously as advocates? Should we feel guilty for choosing not to write personally? Are we disabled enough to be speaking up?

Against this background, UCL, the University of Kent, the University of Nottingham, the University of Leeds and Chronically Academic network are collaborating to host and support an event, Ableism in Academia, on 23 March 2018.

This symposium will provide a forum to discuss the pressures and challenges faced by disabled, chronically ill and neurodiverse academics and members of staff. It will also be live-streamed and joining details are available online. After the event, two edited books on theorising ableism in academia and negotiating ableism in academia will be published, both of which will be open access and available through UCL Press.

We hope that participants will engage in debate around academic ableism both at the event and outside it to help create a manifesto that will challenge academia’s existing notions of able-bodied perfection.

Jennifer Leigh is a lecturer in higher education and academic practice at the University of Kent, while Nicole Brown is a lecturer in education at UCL.