Dr Nicole Brown (UCL IRIS page) is a lecturer in the department of Culture, Communication & Media. She has been a co-chair of LTC since 2018 and is known for her work on inclusion and challenging 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.
Initially when I first floated the idea, we were looking at different rooms at UCL that would be accessible, and I had chosen a room that would have allowed 40 people in the room and I was thinking at that stage already that we would have short, lightning talks – really short and snappy presentations – and that I would probably have something like 10 speakers, so therefore the 40 tickets would be limited to 30 participants. And then those 30 tickets went within 24 hours on Eventbrite so, straight away, we realized that was obviously not a big enough room and we needed more. And it basically just mushroomed from there.
In the end we had a room in IOE that catered for 80 delegates. We also had a livestream at the University of Manchester, the University of Kent, the University of Birkbeck who were watching the livestream as things happened. Obviously, with the livestream, anyone who was around the world – not just in the country but everywhere – could join. We also made the link available afterwards as a YouTube recording, so that’s still available for people to watch. And it was a magnificent day. I mean, we had thought of everything possible to make this accessible; in terms of food, for example: a lot of the conferences, if you’ve got food issues, you end up with a plate of salad and not much else. And it’s not very nice for most delegates who’ve got food issues, because you can either be gluten-free or you can be diabetic, or you can be dairy-free, but you can’t be both (let alone all three) because people don’t cater for that.
And we had food that was all of that, and it was hot, and so people actually got a hot meal at lunchtime and we had it delivered from Ned’s noodle bar, and basically what we did was, we took the bags and the pots of food delivery boxes to the people on the tables where they were sitting in the room, so there was no lunchtime queue. Hum, there was no scrambling for the plate that is named yours, just in case anyone else takes it before you actually get there, and it actually meant that people could generally network, irrespective of what kind of mobility issues they would have had.
At most conferences, people have to navigate the lunchtime with a glass of wine in one hand, the plate in the other hand, and I don’t know how they then deal with their mobility aids because they might not have enough hands. But how we’ve done it, we’ve said to all of our delegates, ‘stay where you are, stay seated. Be comfortable, we’ll come around with the box that is your specific box of food and you can then eat it on your table’.
We also had different kinds of tables, different kinds of chairs, height adjustable ones. We had 3 British Sign Language interpreters in the room. We had live captions. Any kind of food, snack foods, that were available throughout the day were presented in their original boxes so that people would be able to look at the labeling and would be able to identify whether they can eat those things or not. We made available and fruit and water throughout the day for everyone, as and when they wanted it. We had a quiet room with blindfolds, socks, blankets, cushions, pillows, again to make people comfortable. Eventually we took some of those into the main room and people used them there. Some people felt cold, so they needed the blankets. Other people wore shades, sunglasses because it was too bright for them in there in the room. We had people taking a break in the quiet room as well, so all of those things were really really well used and well received, we even had a bowl there in case a person with a guide dog turns up, so that we could actually provide some drink and water for the guide dog. So, we literally had thought of every opportunity to make sure that everyone is welcome and feels that they are part of this, and they are important. Here is a write-up from a delegate, for example.
The conference itself was incredibly powerful, from the lightning talks. They were all held by people who are specialists in their field, but not necessarily specialist in disability studies. The specialism in disability, if you like, was their personal experiences and that made those talks even more powerful. And the discussions that happened there in the afternoon were very important in terms of creating the outline of different recommendations and guidelines which I have produced, as one set of recommendations in an open-access book that’s coming out in October. The impact of that work was absolutely tremendous, and it wasn’t something I had anticipated at all, but there were lots of people contacting me – and still contacting me now – saying that that conference was the first one that they could access in decades simply because it was accessible via livestream and most other people couldn’t do it.
I appreciate with COVID things have changed and there’s a lot more that’s available online now, but at the time, our conference was quite at the forefront of it, and that was something…we didn’t move it online specifically, simply because we also wanted people to have the experience and the opportunity of the experience in the room, but at the same time we didn’t want to exclude anyone, which is why we had all of those breakout rooms and breakout events at other universities. So it was generally, very, very well received and I’m quite humbled by how much people are still sort of talking about that and still getting back to me to explain what we’ve done and how we’ve done it. In the end, the one thing I would say also is actually making things accessible in many cases isn’t about huge amounts of money.
Yes, we did have quite a bit of money behind us, but actually things like microphone etiquette, for example, to make sure that people that are in the room are using the microphones that are there – that doesn’t cost anything. It’s just that most people just turn up at the lecture and think ‘oh you can hear me without using the microphone’ because they don’t like to hear their own voices over the loud speakers (and I’m one of them too!) but at the same time you are excluding a number of people; and that is just making people aware and actually saying ‘no, we want you to use that microphone’ and that doesn’t cost anything because the microphone is already there anyway.
So I guess it’s those little bits that were kind of the most impactful in terms of shifting people’s awareness that actually, yes, we are quite ableist in our behaviour, even when we perhaps don’t want to be, and we – we’re not intentionally trying to discriminate against others, but in reality we do. For example, one of the things that was part of the presentations as well was about the ‘stairway conversations’ after meetings, when everybody leaves the building, people walk down the staircase together. But what about the person that can’t do that? What about the person that has to use the lift? Not because they’re lazy, not because they don’t want to walk down it – just because they cannot. That person is automatically excluded from the networking and the more social elements of walking down the stairs. And that’s something that that conference was very good at in terms of highlighting how those little things make a massive difference to the experience of the individuals.
JPD: I’ve been nodding. I was at that at the conference and what I do want to say is that…I’m in my 50s; I’ve been to academic conferences since I was about 23, in various different disciplines, and I’ve never known an atmosphere like that. The intensity, the razor-sharp focus…the level of generous engagement that the audience had. So I remember particularly someone speaking about being colourblind [Oliver Daddow]; I had no idea about most of the things he was explaining but, you know, someone who is sitting there, perhaps in a wheelchair or with an internal invisible issue, was just as focused on his issues as he was. And then when someone else spoke about the difficulties of – basically if your guts aren’t working very well, let’s be polite. A 9:00 o’clock lecture at another university is an absolute disaster because you can’t access proper facilities on the way, and so it’s something that for other people is an inconvenience, became absolutely a mountain to climb for her.
JPD: It was a long day, but it wasn’t tiring like – most conferences are quite tiring, and in this case it was more a sort of ‘well, I do need a rest, but I don’t want to stop.’ So that’s my firsthand account of being one of the participants. I know you must have put a huge amount of work in.
NB: I appreciate you saying that because actually I myself didn’t see much of the day myself because I was constantly rallying around making sure everybody was comfortable, that everybody knew where they were going and that the food got delivered. I wasn’t actually in the room for much of the time. I was able to catch up on the day on YouTube, but obviously the atmosphere was something that I kind of glimpsed but didn’t really experience as part of a delegation because I wasn’t in the room all of the time. So hearing that from you is actually really nice.
JPD: I absolutely mean it, it was unique. I’ve been to many, many conferences, many of them very good, but the focus and the sense of inclusion that the sense of ‘this matters’ and the level of attention was unprecedented for me. As you say, people hadn’t been able to attend conferences for decades, and they were damn well going to make the most of this one.
NB: I think that’s the reason why that was, why everybody was so focused on it, was because the issues were at the heart of people’s concerns. It wasn’t about profiling yourself as an academic, it wasn’t about trying to show off the research you’ve done. It was about trying to find common ground and finding ways forward so that we could actually have recommendations that universities can implement. So there was this sense of, almost like an activist sense of urgency of trying to, trying to, come up with something that we can all do together.
JPD: Have you heard of conferences that followed, that took the guide that you then published? And then write back to you and said all that ‘I wouldn’t have thought of this, it was really helpful’ or ‘actually this didn’t work’. Given that your conference was an extraordinary success, was there anything that perhaps didn’t work or you might have done differently?
NB: So in terms of what people have come back to me about was actually…people appreciated that as part of the publication, we’ve also got like a one page summary of recommendations, if you like, and people really appreciated that one page summary and the honesty with which we talked about organizing the details, and thinking about all of the details. Also, in the end, the money wasn’t such big part of the consideration; there were more practical things that were more important, and people really appreciated that.
So things like having a quiet room, for example, that needs to be accessible with enough room to actually manoeuvre a wheelchair because it’s no good if people can only go in; they also need to be able to turn around in there. So it’s all of those little things that people were like, ‘oh yeah!’ Actually, if you’re not in a wheelchair yourself, you may not realize that turning the wheelchair requires quite a large area because you’re pivoting a massive gadget. So it’s those kind of little things that people really appreciate.
Also I think people were and still are appreciative of the fact that I’m not out there to say, to lecture people on how they have to be more inclusive and how they are doing things wrong. I’m saying, ‘well, let’s try and do things correctly, and right, within the kind of given circumstances that we have’. If we’re honest, it is not feasible to say you’re going to be 100% accessible at 100% of the time for 100% of the people; that is impossible and I can give you an example, as we’re talking about on [Microsoft] Teams. People who’ve got neurodiversity concerns and sensory overload, they want their videos off and they want everybody’s video off because it’s just overloading them with information and their brains can’t cope with that very well.
On the other hand, we’ve got a group of people who are hard of hearing who rely on lip reading. They will want the speakers video on. You can’t have the video on and off at the same time. There’s always going to be some compromise that needs to be made, and in this case, obviously the compromise is that the speaker keeps the video on and everybody else keeps it off. But it’s not ideal, it’s still a compromise, and this is the kind of message that we got across with all the things that we’ve done.
I’ve done a number of talks as well, not just the publications, but also talks, and I’ve had conversations with Springer Nature, Wellcome, with the British Museum. So, on the basis of our conference, I was able to connect with all of these different, bigger groups of people where I’m constantly reminding people to say, actually, we know that you’re not maliciously, intentionally trying to exclude anyone, but we also know that there is a realistic expectation that you know what? 80% or 90% of accessibility should be met, not 100%, because that’s not possible, but 80% or 90% is something we can work towards, and that realistic target is something that’s really important to people, and I think that’s probably because I’m not lecturing. ‘You have to, you must’. That’s probably kind of had the most impact. So out of the flyer and the publication people basically just pick and choose, if you like, the things that make most sense to them in their circumstances.
Obviously some people are able to cater and provide different kinds of catering; other people are able to include British Sign Interpretation, for example, but not everybody has got the finances to do both, and that’s fair enough too. So you’ve got to make that kind of decision on where you compromise, but at the same time, we are giving people the tools to make that decision and to find the compromise that’s feasible, and I think that’s that’s really been kind of the most impactful element of it.
In terms of people getting back to me what didn’t work; there have been some people that got back to me saying about live captions, that that was difficult and we found that on the day ourselves that the live captions were problematic at times – for all sorts of different reasons, but one of them is the technology. We had two speeches that were pre-recorded and the captioners couldn’t hear them very well, so they were struggling to keep up with it. Captioning sometimes isn’t done by people, but it’s done automatically and those auto functions, although they get better and better, they struggle to recognize different accents. They struggle to recognize expert or specialist jargon and vocabulary and those kinds of things are then decreasing, if you like, the experience somewhat, but at the same time, everyone who was there acknowledged that we tried to cater for everything.
And that’s what it’s, that’s what it’s really, all about in terms of the disability activism that’s going on in higher education. People just want to be recognized as a demographic group of people, that isn’t forgotten. That’s all it is. People aren’t asking ‘oh you must do this, you must do that and and if you don’t, then you are exclusionary.’ It’s not like that, it’s just like, well here is us as a group. Yes, as we are not a homogeneous group. We ’ve got many, many different needs. But let’s just try and find what the common needs are. And let’s try and meet those, ’cause then we can meet most people’s kind of expectations and we can help most people at the same time.
That goes back to things like PowerPoint presentations, black writing on white background. I mean, black writing on white background for anyone with sensory processing issues or dyslexia or Irlen’s is quite difficult. Well, let’s just put the black writing on blue background; for those people that don’t have dyslexia, it doesn’t matter. They don’t really care. Most people wouldn’t even notice that the background isn’t white, but the people for whom that is a necessary adjustment, it’s something that’s incredibly valuable and really, really helpful. So again, actually quite a low-cost way of dealing with it.
JPD: So let me push this a bit. How much of this has made its way into the classroom, either yours or other peoples, do you think?
NB: I think again, you know it’s just basically…it’s helped me as a lecturer to lead by example, and I think that’s that’s probably the most important thing, that I was able to say ‘look, I have done that for a conference. I can do that within a 2 hour lecture as well, use the microphone’, have not-black writing on white background, little things like that. And students: you know we don’t know who’s got what needs in our classrooms and yes, OK, we get some individual education plans or whatever, but not everyone; not everyone will disclose their condition; not everyone will have an education plan, so the more we are just becoming aware of different kinds of experiences and the more we can incorporate them into our everyday practices, the more we will actually provide support for our students, even unknowingly. And that’s the one thing that I have done.
In terms of talking to the students about my ableism work; that’s something I don’t tend to do, I don’t. It’s not that I’m hiding it; it is there in the open, it’s pretty much out there, but it’s not something that I’m making a big deal of because for me it’s a matter of course to record the lecture; it’s a matter of course to use the microphone, so it’s not a big deal. And I think that’s because everything is just becoming a matter of course. Students pick up on that as well, and they do things as a matter of course in return.
So there is this kind of dynamic that develops from that, and that’s only possible because I have been listening to what people have been telling me. I mean, some of the experiences I can relate to, but some of them, quite frankly, I can’t because I can’t put myself in somebody else’s shoes. But by listening to what people say and by trying to, trying to picture what that could feel like, that helps to kind of get a better understanding. If you’re entrusted with stories like that, you can’t unhear them, and you can’t just leave them there; if somebody trusts me with their personal story, I feel like I need to do something with that information.
JPD: I might steal that line for the blog as a headline. It seems to me much more useful to get these stories out rather than just ‘tips’. So – come lockdown. We’ve all got online and that shifted the ground quite interestingly, hasn’t it…
First of all, there have been quite reasonable complaints from people who said ‘I asked to join meetings by Teams two years ago because of condition X, and you said it was impossible’, so I think we can probably no longer accept any excuses – even when we’re all back – if people say ‘I don’t know how to livestream’, we can say ‘where were you in lockdown?’ But, as you pointed out, some people are struggling with, for instance, overload, and then will be told to turn off incoming video, but that’s difficult when someone’s showing slides and so on. So at some point we will probably be back in rooms and not at home. What do you think’s going to persist and what will just simply revert back to what it was before? To rephrase that, what do you think are the most important things we’ve learned and that we can hopefully persist with?
NB: There are several things here. On the one hand, loads of studies have been done on COVID already and especially on the impact of COVID and the lockdown, obviously, on people’s well-being and mental health, on people’s happiness levels. I don’t think that that’s something that society will be able to ignore. When we get back to ‘normal’, whatever normal then means, I do think that all of those things that are being highlighted now as to how they’re impacting people’s health and well being, that’s something that will stay with us to a certain extent – I’m not saying to the full extent, but to a certain extent.
The other thing is also, because of lockdown and because of the issues people have encountered, They have first hand experience, now, what it feels like to be depressed. It’s not a proper depression because this is kind of, you know, it’s a temporary issue, it’s triggered by that event that’s happening at the moment. But people can’t ignore what it felt like when they had those low moods and those depressing episodes. So you know, somebody saying ‘I’ve got depression’ now is probably less stigmatized then it would have been five years ago, because a lot of people know now what it feels like to be in that position. And yes, it doesn’t compare, I’m not trying to say it does compare, it is a completely different matter and a depressive episode and proper depression is different in so many ways and at so many levels. But there is still this element that people are able to empathize more than they were ever before.
At the same time, we know that COVID has got quite some long-term effects on some people. Not on everybody, but on some people, especially where fatigue is concerned. So anyone with fatigue issues and anyone with disabilities and chronic illnesses and neurodiversity will know fatigue as part of their everyday life. That kind of fatigue can’t be brushed off anymore. Because people have caught COVID, they’ve experienced fatigue three months after having had the infection. So, you know, come on, if you’re saying that that’s OK, then clearly you’ve got to accept my kind of fatigue as well, if I’m telling you that just trying to navigate the day is tiring. So again, I think these first hand experiences are quite useful in terms of actually saying to people, ‘do you remember what it was like’? And yes, it’s not the same. Again, trying to walk in somebody else’s shoes is not ever possible, but trying to remind people ‘well do you remember when…?’ That’s something, that’s quite a useful tool. So in that sense, I do think that we can’t go back to everything as it was before. In terms of, you know, the kind of impact longer term, I am hoping that there will be increased flexibility around working hours and ways so that some people may want to do things on Teams even if we are able to do face to face work again.
I’m also hoping that there is more recognition on the emotional labour that certain people are undertaking and that there’s more recognition of how certain kinds of work and emotional labour outside the ordinary kind of working hours, impact working effectiveness and productivity. So I’m just looking at things like childcare duties or caring responsibilities for elders, you know, anything like that. I’m kind of hoping that will be recognized, but I think I’m also quite optimistic. At the same time – I mean the latest thing now, I don’t know whether you are aware of that; I have cowritten a position paper on lockdown and the post-lockdown situation and the kind of strategic view that universities or higher education institutions should take in terms of supporting people as we come out of lockdown. That paper is being published now in a journal – it’s part of the National Association Disabled Staff Networks, and one of the things that we mentioned in there was that there should be a ‘no detriment policy’ for staff because obviously at student levels we had that we were saying the pandemic shouldn’t impact your grades, so there should be a no detriment policy for students. But actually at doctoral level and for academic stuff, there wasn’t an explicit no detriment policy.
Well, there is now – UCL has literally just last night or the night before, published a no detriment policy, we see these things happening. They make me more hopeful and more optimistic that actually we won’t go back to what things were before.
JPD: I saw the UCL policy. I do think that UCL have handled this extremely well on many fronts. And people in other universities have not been so lucky; redundancies threatened and the like…do you think it’s going to change the landscape of working then?
NB: Yeah, I do think I do think it will change things because you know, I mean, let’s be honest about this; UCL are coming out with a no detriment policy. That means that all of the Russell Group universities are going to be under pressure of actually following that one way or another. Once all of the Russell Group Universities have done that, what are the other universities going to do? Well, they’re gonna have to follow it one way or another too, because you can’t compete with a university at that level if you don’t have something in place that’s similar.
JPD: We’ll sidestep the issue of funding and the government not particularly being…helpful… in the current situation, but that’s probably beyond our scope today. Is there anything else you want to bring in that hasn’t had a chance to come into this conversation, that you think people should know about or think about?
NB: I think – I’m not trying to criticize disability studies – but I do think that the way forward with any kind of policy-making around disabilities, chronic illnesses and neurodiversity in higher education has got to be with listening to individual experiences, not necessarily theorizations. I mean, theorizations have got their place. But you try and put forward theorizations to somebody in a Human Resources department – it’s not actually helpful. You explain things by listening to people’s stories and listening to people’s experiences. People can start connecting – ‘well actually, yes, I start understanding what they’re saying.’
That’s the way forward, of actually providing the kind of impetus that’s needed for policy making, so I think ultimately, policy making, in that sense…you require the scholarly work, you require the academic work and the theorization is obviously there for the academic outputs.
But in terms of policy making, I generally believe that the connection – empathy – those are the things that are really important, and that’s what I’m hoping to achieve with my work, is actually showing people, so the conference for example wasn’t about me putting on a conference, it was about showing people how it can be done so that it’s accessible, because I myself had that first line where people were saying, ‘well, no, you can’t access that’, and the frustration of it, so, trying to show by example and with with practical experiences and lived experiences. I think that’s the way forward.