This is the beginning of a series of blog posts on disability and academia, partly based on recent experiences I’ve had as a disabled/neurodivergent attender of academic conferences. Part 2 will be about physical access (oh, and how much fun I’ve had with that over the past year). And there will be a part with recommendations. This part, though, is about my experiences of neurodiversity access at conference. It’s going to be a long one, so I’m dividing it up with headings – readers can jump to the section that they’re most interested in.
For readers who don’t know: I have Asperger’s Syndrome, dyspraxia and dyslexia. These are types of cognitive-functioning conditions that are often grouped under the umbrella heading of ‘neurodiversity’. We often prefer this label to medical labels, as it was chosen by us rather than by doctors, and we own it for ourselves.
There is a movement of neurodivergent people out there. We think differently and approach life differently from other people, and we are disabled by having to interact with society in ways that are very difficult for us. There are things that can be done to make life easier for us. Not everyone wants to put in the effort of doing these things… and that’s where things start to go wrong.
Let me say again something that I said on twitter yesterday. I find being in academia, as a disabled and neurodivergent person, to be an oppressive experience. That doesn’t mean it’s all bad. I love doing my PhD. It’s exciting and rewarding and I feel like I’m researching something that urgently needs researching. But it does mean that, on a daily basis, I experience disablism, encounter social and physical barriers, meet with abuse, and have experiences that can be deeply traumatic – specifically because I am disabled.
This is what the social model means when it talks about oppression imposed on top of impairment. But it’s also not unrelated to impairment. When conferences and other academic events are inaccessible, oppressive or traumatic for me, the psychosocial effects are lasting. It’s not just a case of “Oh well, that conference didn’t work for me.” It makes me wonder – very seriously – if I’m cut out for academia at all. Because oppression likes to stay invisible and blame the victim, I feel like it’s all my fault.
And it makes it worse when people do the thing that they always do with neurodivergent people who ‘pass’ as neuroypical: telling us it’s not that bad and that they feel the same. “I hate networking too!” OK, well that means I’ve failed in explaining the experience of autism-in-academia to you. So here I’m trying, again, to explain what is wrong with standard academic conferences for me. (I cannot speak for other neurodivergent people – although some of my experiences will not be uncommon.)
My friend Laurine has done some fantastic writing on this subject today. I’m going to approach this a bit differently, talking about my specific issues and how they’ve been supported… or not. The ‘not’ being a little bit more common. I’m hoping that this will paint a picture of academic life for one neurodivergent person (who also has physical impairments – but I’ll focus more on those in Pt 2 or 3).
One of the talks yesterday was on ‘neuroqueering’ academia – by which the speaker meant challenging, disrupting and transforming the academic experience. It was delivered at the end of a long day of the standard three-papers-per-hour-followed-by-awkward-coffee structure. The irony did not go unnoticed. We should be practicing what we theorise.
A Conference Experience
Nonetheless, there was a lot that was fantastic about the conference I attended yesterday, a Mad Studies conference on making connections between the survivors’ movement and the neurodiversity movement. The organisers had really planned things well. They had done a lot of what Laurine has recommended in her post – things that most conferences don’t bother with. Maps, schedules and details were offered in advance. A lovely quiet room was provided. (With sofas where I could lie down! No need for my usual curl-up-on-the-floor-in-the-cafeteria experience!) They had thought about lighting, noise and other sensory issues. There was a lot that they got right.
So I do hope they don’t read this as criticism. It’s intended as constructive feedback. An attempt to communicate the experiences of conferences like this, from the viewpoint of an autistic delegate.
Getting There: Cost, Travel, Energy
I spent about £120 to attend the conference, between train fares and hotel costs. I am a largely-unfunded PhD student (for reasons not unconnected to my impairments, although that’s a more complex issue that I’ll explain another time) and at the moment I mostly live on my DLA and savings. Travel is also very difficult for me. On this occasion I also couldn’t afford to bring a support worker, because I have nearly run out of Disabled Students’ Allowance funding for the year (my needs are expensive). But I really wanted to go to this conference. So I found the money and hoped for the best for the journey. (It helped, a lot, that the conference itself was free. Thank you so much to the organisers for that!) The decision to go to a conference like this, in another part of the country, is a big one for me.
So there I was, the day before yesterday, travelling on the train to Lancaster alone and staying in a hotel room alone (things that really aren’t recommended for me!) because I was so excited about this conference. Connections between these diverse but interrelated movements? This was going to be history in the making.
I got a bus from my hotel to campus, to save money on taxis. Using buses is challenging for me, as I can very easily get on the wrong one. Again, it helped that the conference organisers had thought about this, and had suggested departure points and bus numbers. I managed to end up going in the right direction, after some struggle finding a wheelchair-accessible bus. So far, so good – although by this point I was starting to get very tired. At 9am.
On Campus: Missing the Mark
Here’s the most ridiculous story of the day. (Be nice – I’m admitting my neurodivergent embarassments here.) I got off the bus about one minute’s walk from the building where the conference was to be held. I didn’t know it was there. I can’t read maps (no, really, not at all). And because I can’t do acronyms, I didn’t know that ‘FASS building’ was the same thing as ‘Faculty of Arts and Social Sciences building’. So I missed it, and wandered for about an hour around a big, strange campus. In the chilly rain. Fortunately I was on my scooter, rather than using crutches. But that didn’t help with the tiredness and emotional-ness that I was already dealing with when I finally worked out what building I was meant to be in, and found it.
Networking Nightmares: Are You Sure You ‘Understand’?
When I arrived, no one was there to meet me and tell me what I was meant to do. I wandered into the room where the main event was to be held and sat around for a while. Eventually I managed to overhear that people were having coffee in the next room. A detail on the programme like ‘Registration – tea and coffee in [Room A]’ would very much have helped here. (I need a lot of details in order to cope with life.)
So-called ‘networking’ was probably the worst trauma of the day, for me. This is the point at which someone is going to say “Everyone hates networking.” But no, you don’t hate it in the way that many autistic people do. You weren’t sitting there, like me, considering just walking out and spending another hour in the rain finding the bus stop and going home, because you didn’t know anyone, didn’t know who you could approach or how to approach them, and were about to have a panic attack. You didn’t regularly attempt to insert yourself into a conversation and find yourself ignored because you don’t actually know how to enter a conversation with strangers. You probably didn’t thank the wrong person for their presentation (due to your ‘face blindness’ making you think that the first person with long hair that you saw was the presenter), and then have to deal with the crushing embarrassment of appearing utterly stupid at an academic conference that’s all about brain power and looking clever.
You didn’t also have to combine that with negotiating small spaces in a mobility scooter, having to struggle to make and carry tea, and get past people standing in the way, and squeeze between chairs in the overly crowded room setup. Later, you didn’t find out you’d left your scooter in a place that was inconvenient for someone else, while you were trying to recover in the quiet room from all the stress, and feel obligated to go back into the proceedings and move it. (No blame attached to the people who needed me to move it! It was just stress on top of stress, because I have an issue with not wanting to upset or distress anyone else. A clear place for mobility aids might have helped there.)
A Neurodivergent Conference: Asking Too Much?
I’m going to say something now that may get me in trouble (if everything I’ve said up to now hasn’t already!) The higher the proportion of nerodivergent people at an event, the more disabled I am. My needs very often clash with those of other neurodivergent people. For example, there are people who talk a lot during presentations and make a lot of noise. This is beyond their control. But it is incredibly difficult for me, as I need silence to concentrate, and am easily triggered into panic attacks by noise. (I should have considered where I was sitting a bit more carefully!) Socialising around other neurodivergent people is also very difficult. Many of them don’t want to initiate conversations with people they don’t know – and why should they have to, if that’s difficult for them? My needs don’t outweigh theirs. This is the kind of thing I meant when I said, in a comment during the final discussion, that it is difficult to make conferences accessible to all neurodivergent people. Really difficult.
But I firmly believe that that doesn’t make it impossible. I was discouraged on the way home, thinking about whether I simply ask too much of academia and academic conferences. Should I suppress my difficulties, continue to ‘pass’ as normal? And just leave academia when that gets too much?
I think the answer is that no, I shouldn’t. It’s not just about me. We need to ‘neuroqueer’ academia for others. As Laurine G-M said in a conference on ‘passing’ last week – passing as ‘normal’ is unbelievably difficult and exhausting in ways that neurotypical people can’t see. And it’s a vicious cycle. It creates expectations (“but you don’t seem autistic” expectations) that mean you are expected to continue passing, and that creates more stress and exhaustion, and ever more expectation. Eventually, it becomes too much, and perhaps we leave. Why destroy yourself for a career?
But it shouldn’t be like this. I refuse to live in a world where accessibility is too high a demand to make. It is possible. Academia can become more accessible. I am determined to help it to do that, as long as I have the strength to stay.
As A Speaker: Pure Terror
I didn’t speak at this conference. I did speak at the conference I was at last week, where Laurine G-M also spoke. So here are some thoughts on speaking at conferences.
I faced my worst nightmare last week after presenting.
Let me say first: giving presentations is an access nightmare for me. I have had meltdowns after giving some papers and refused to give them ever again in that environment. (To name and shame: the Biblical Studies department at Sheffield, at which I had such a horrendous, confrontational experience with questions after a (very good) paper – with no backup from the teachers – that I refused to give presentations there again, despite it being a requirement of the PhD there.) This is not your usual discomfort with presentations and papers. This is pure terror. Yet, I somehow continue. But it takes a lot out of me.
I especially can’t cope with questions after papers. I can prepare and prepare and prepare for presentations. I can’t prepare for questions. And often, I can’t think on my feet. That’s a disability issue. My brain needs a lot of time to process things. (Sometimes I ask for questions to be sent to me by email, rather than asked in person at the conference.) At last week’s conference, instead of papers-followed-by-questions (my preferred format), three of us gave our papers and then there was a general Q&A. I deliver papers through pure adrenaline. After that subsides, I become very tired and don’t want to talk or think anymore for a while. Let me answer questions while I’m still in paper-delivering-mode, not afterwards when I’ve lost the ability to think.
Worst of all, the chair decided to collect all the questions at once and get us to answer afterwards. I had not been warned about this, and no one was taking notes for me (I can’t write by hand) so I couldn’t write down reminders of each question – not that they’d really have helped. I tried to answer the first question and was shut down while they collected 10 more. “I’m going to have trouble remembering them,” I tried to protest – but no one understood this as an accessibility issue. I could barely remember any of the questions, and ended up saying very little (and probably looking stupid, once again).
Please, never ever do this – at least, not without warning. All sorts of people will have difficulty remembering ten questions collected at once. Especially neurodivergent people or those with learning difficulties. That is an access nightmare. Allow one question at a time, no matter how much it may seem to slow down proceedings.
Queer(y)ing the Proceedings
At the end of yesterday’s conference, I tried to make an intial comment (that I hoped might be part of an ongoing discussion) about conference structures. I queried why the conference format had been so academic-standard, and whether it could be re-thought (neuroqueered!) for future events. I also mentioned networking (although I’m surprised that that’s the part people have focused on in their replies to me on twitter, and not the three-papers-an-hour-from-the-front thing). I received a frustrated response from one of the organisers. While I understand that criticism can seem negative, I think it’s important that organisers recognise when people are trying to help make things better. (Here is my offer to help! I’m no stranger to conference organising – I’m currently helping to organise a major Church of England conference on disability – and could give a lot of advice on this stuff. As could many others.) Other organisers were much more positive about my feedback, though. But I do apologise if my comment came out as a criticism. Sometimes what I say isn’t quite what I mean to say. This post series is my attempt to be a bit clearer!
We All Have To Neuroqueer Conferences
On a more personal note, I became very distressed when someone behind me reacted negatively when I put my hand up to make that comment. I hadn’t spoken once all day, but some people know that I can be outspoken and engaged at conferences where I feel comfortable. It was hard for me to make any contribution at this conference, and I will be further discouraged from contributing now. It is so very important that delegates are asked to respect others in their behaviour, and even to consider putting their own quirks aside where they may impact others, if they possibly can. This is part of neuroqueering academia. It’s not just about making it work for us individually. It’s about making it work for everyone. It is not just about the organisers. We, too, contribute to accessibility.
By this point I had had enough. I left early and spent two hours at the station waiting for my train. I then met a couple of nice people from the conference, one of whom had seen me tweeting, and we talked about that. It was interaction that had begun in an online forum and was continued into face-to-face conversation. It was my best ‘networking’ experience of the day! This gives me ideas for pre-conference preparation online, that could perhaps enable better interaction among some participants. But I need to give that more thought, so it will come up in my recommendations post.
There will be a Part 2 (and probably Part 3!) to this series. In a follow-up post, I’ll be making suggestions for ways to make conferences more accessible to neurodivergent people, particularly me! (Since, again, I can only really talk about myself in the end.) In the meantime, Laurine has written a fantastic list of guidelines for conference organisers who want to make things more accessible for autistic people. Sarah Carr has also found this lovely list, that applies to many neurodivergent people as well as to introverts. I’d like to thank the organisers of yesterday’s conference for doing most of these things! It really was one of the best conferences I’ve been to. I haven’t even touched on the amazing papers and disussions that came out of yesterday conferences. It was, as I suspected, history in the making. I’d love to be involved with more of what comes out of this fledgling field of Mad Studies.
By the way, I mostly survived yesterday by live tweeting. If you’re interested in the debates and discussions that went on yesterday, you might find the #madstudies hashtag interesting. Enjoy!