Dr Nicole Brown is Head of Research Ethics and Integrity & Associate Professor at UCL Institute of Education.
She is an expert on ableism in academia, having authored several papers about the subject, wrote and edited two books on the topic as well as two other books.
She currently leads the module “Disabilities, Chronic Illnesses and Neurodivergences in Contemporary Society”, and was awarded her PhD in Sociology at the University of Kent for her thesis “The ‘I’ in fibromyalgia: the construction of academic identity under the influence of fibromyalgia”
Here, Nicole tells us about her experience of accessibility in academia.
Q: How accessible is academia?
“Unfortunately, as my research shows, academia is not a very accessible working environment. We know from a wide number of qualitative interviews that academics often do not disclose their needs for fear of stigma and repercussions. The consequence of that is that these individuals cannot access the relevant support systems that would be in place to help them.”
Q: Let’s follow up on disclosure – why do you think are there so many academics that do not disclose their conditions, diagnoses or needs?
“Disclosure is a difficult matter. It is not merely a case of saying “I have…” whatever this diagnosis may be. Firstly, a person needs to get a diagnosis. There are some conditions that are notoriously difficult to be diagnosed, though. For example, fibromyalgia, which is a chronic condition characterised by widespread pain, cognitive dysfunctions, sleep disturbances and psychological disorders. It’s a condition that can only be diagnosed by exclusion of everything else. The journey to diagnosis is therefore really long. But that’s only the first part to that story. Secondly, once a person has a diagnosis, they have to come to terms with that diagnosis themselves. And without invalidating experiences of particular illnesses and disabilities, there is almost a hierarchy of diagnoses, which makes it easier to come to terms with some but not other conditions. Cancer, for example, is associated with a narrative of heroism, we are fighting and battling cancer, we are survivors. Schizophrenia by contrast is linked with discourses of weirdness and oddness. So the coming-to-terms is a very personal journey people have to go through before they can publicly say “I have…”. And then thirdly, within the realm of academia, individuals engage in a cost-benefit analysis around disclosure. They basically weigh up the costs of stigmatisation, being treated differently and being pigeon-holed against the benefit of support systems they can access. Unfortunately, in academia for staff the benefits are far too often outweighed by the costs.”
Q: Our readers are mostly HR and DEI leaders involved in diversity and inclusion. What message would you like to share from your work into ableism in academia? What strategies should universities and higher education institutions be concentrating to improve accessibility?
“I would like to bring forward three key areas here: processes and procedures, allyship, and active listening.
I know that we need processes and procedures, like we need rules and guidelines around disability and inclusion. However, many of the processes and procedures are not practicable for people with disabilities, chronic illnesses and/or neurodivergence. For example, applying for reasonable adjustments through the Access to Work scheme puts a significant burden on individuals that is additional labour, which non-disabled colleagues do not need to deal with.
“Tied in with the processes and procedures, I would suggest that we need outstanding allies. Instead of asking individuals to complete the details for the Access to Work scheme, allies could take over the responsibility for completing the forms together with disabled colleagues.
“Within disability studies there is this motto: “Nothing about us without us”. And it is this motto that should guide all of our work. As senior leaders and human resource managers create new policies, procedures and processes, they should consult with the disabled community to gain detailed, relevant feedback so that the people who are the most affected by any changes can input. At the heart of this motto lies active listening, a form of listening that is attentive and responsive.”
Q: One of your most recent papers is a study about post-covid lockdown and the implications for disabled staff. What are some of your key findings?
“The article you refer to comes out of exactly that attentive, responsive active listening I mentioned earlier. My colleagues and I were all part of a wider network of disabled staff in higher education and the tertiary sector the National Association of Disabled Staff Networks (NADSN). At the time, many of our members voiced fears around a post-lockdown world, as they would be required to “return to normal”, when they were still all vulnerable and we hadn’t had the vaccines, yet, to ensure that they would be safeguarded against the virus. In response to that, we created the position paper focussing on how senior leaders and representatives from HR departments should approach the return to campus. The article outlines 12 recommendations, the common denominator for which is again the principle of “nothing about us without us”. Disabled, chronically ill and/or neurodivergent staff need to be given an opportunity to explain how they feel about returning to normal and what can be done to alleviate some of the particular difficulties, anxieties and fears each and every one faces. At the same time, we do need to be realistic and pragmatic. Often, people’s needs are conflicting, and we have to reach compromises. For example, in the UK, pavements often have knobs on the ground to indicate to people with visual impairments that they step away from the safety of the pavement and enter the riskier environment of a road. For wheelchair users these knobs are genuinely painful. In such a case, it’s just not possible to have a solution that suits both groups of people. Therefore, we shouldn’t even try to create policies and frameworks that require 100% compliance. That is just not realistic. Instead, we should aim to meet the needs of 90 per cent of the people at 90 per cent of the time. Ultimately, as I am saying in all my publications, we all need to do much more to raise awareness for the plight of disabled, chronically ill and/or neurodivergent academics in order to make higher education more inclusive and accessible in the long term.”
You can hear more from Dr Brown about accessibility in academia through her website: https://www.nicole-brown.co.uk/workshops/