This is an extract from a guest interview on the Liberating the Curriculum website of UCL published in relation to my ableism in academia work. In this post, I reflect on my ableism work, how I came about to take a leading role in the activism around ableism in academia:
JPD: Welcome, Nicole. Tell us who you are and what your role is, and perhaps one or two sentences about your interests as an academic.
NB: OK, thank you. So my name is Nicole Brown and I’m a lecturer in education at the Institute of Education, and I have been since 2008 – so for quite a while! And my role as a lecturer is teaching at undergraduate and postgraduate levels, and also supervising doctoral students. In terms of my own research interest, I’m very interested in personal lived experiences and that’s really how all of my research has started, in terms of trying to identify ways of how we can explore lived experience and developing different kinds of research methods to capture those lived experiences, and obviously, as part of that research, you look at different people’s experiences. And in my case it was about academics and professional services staff as well as doctoral students’ experiences with disabilities, chronic illnesses and neurodiversity in higher education.
How that’s come about is that I actually started out doing my own doctoral research into fibromyalgia and the construction of academic identity. Fibromyalgia is a condition that’s characterized by widespread pain, cognitive dysfunction, sleep disorders, psychological disorders and disturbances, and all of that obviously means that it has an impact on people’s identities.
But I was interested specifically on the academic side of the identity because as academics we are required to be productive, effective, excellent in so many different ways. And a lot of our work is the scholarly work, is cerebral, and fibromyalgia has got one of those symptoms where ‘brain fog’ creeps in, that’s the cognitive dysfunctions where people suddenly have memory problems or word retrieval issues, or they forget about sequencing, and I was interested in seeing how the bodily experience would impact academic identity. And I guess everything just grew from there because I was looking at the lived experiences and as part of that I then discovered more about how, in academia, there is quite a lot of expectation of having a body and mind that work at full capacity at all times. And the reality is that not everybody experiences that because of the chronic conditions they have or because of invisible disabilities people may be diagnosed with. And that’s really where the research took on a slightly different course, and obviously that’s where I started looking at disabilities in academia more widely.
JPD: Thank you. I know particularly well that you ran a conference a couple of years ago now, in UCL, which got an extraordinary response. Tell us a little bit about how you got that set up, what you learned from doing that, and perhaps some of the long tail of impact and effect that it’s had.
NB: Yeah, but how that started is actually quite sad. I mean, I’m laughing about it now, but really, it was quite appalling really. At the time – that was going back to 2017 in the autumn, and in America; there was a book launch of the book by Jay Dolmage, ‘Academic Ableism’, and I was interested in that book, and I was interested in being part of the book launch and I contacted the organizers, saying, ‘Oh, I’m obviously not in America. Can you let me have the livestream so that I can join from abroad?’
And they emailed back saying ‘we don’t do livestream.’
So I emailed back and said ‘fair enough, you don’t do livestreams, but could I have the link to the recording afterwards, so that I can watch it on YouTube?’
And they emailed back and said saying ‘oh we don’t do that either.’
So I said, ‘well, in that case, what about having at least, I don’t know, the slides that are going to be used or some excerpts of that book?’
I got a message back saying ‘we don’t do that either.’
So that was a conference or book launch on academic ableism, and effectively the only people that could access it were the people in the room – so it wasn’t accessible at all! You know, you’re talking about academic ableism, and yet you are expecting people to turn up on that specific day, in a specific place. So, I was just frustrated and I left it at that, but then somebody else on Twitter, who’s part of my Twitter network, also piped up saying, ‘oh, I just contacted them and this is the most inaccessible book launch on ableism! I think we should do something about that.’
I then pitched in and said ‘well, actually, I agree with you; I do think that we should do something but show them that this can be done properly and well, so that everybody can access it.’ And that’s really how the idea was born, and we got several people on board from different universities, and we had quite a lot of funding from different universities as well: the University of Nottingham, UCL, and the Institute of Education; we had the University of Kent on board; we had NADSN (that’s the National Association for Disabled Staff Networks). We had Chronically Academic and so we had a wide range of different groups of stakeholders involved in this. And that’s how I was able to then organize it.