Problems as a disabled academic attending conferences

Inspired by a very thorough piece in the Guardian newspaper today by Kate Sang I wanted to reflect a bit on my own problems attending academic conferences.

Decades ago I was a young and healthy academic, about to start a computer science PhD. I could attend conferences in their full form: going to all sessions, all days, including meals and socialising.

Shortly after that I fell ill, at just age 22, with a neurological illness very similar to multiple sclerosis. It took some years for me to be diagnosed with cerebral vasculitis, but by then I’d had to drop out of that science PhD. Fortunately I retrained part-time as a historian, picking up three more degrees, including PhD. My disease is incurable, progressive in my case, and is treated lifelong with chemotherapy drugs and steroids to reduce brain inflammation and slow damage.

I can’t work in a paid form due to my illness. It is severely disabling. I sleep for much of the time, sometimes up to 18 hours a day, every day, due to the brain damage and inflammation. And even when awake I am often very confused and can only work for short periods. Near the end of my history PhD I could only work for five hours total a week, in one hour chunks maximum, spread over many days. But I finished the PhD. And I am now active as an academic. I publish academic journal papers, undertake new research projects, and speak at conferences and attend as an audience member. I have an honorary research fellowship from my university, though costs of attending events etc. are paid by myself.

Whereas 25 years ago I could attend a conference in its entirety, now I have to pick at most one or two days, with a day of rest in between. I will also usually have to be modest in my expectations re the number of panels to attend.

Firstly there are the practical issues of getting to the conference. I’m typically travelling with a wheelchair, which usually makes connections by train etc. difficult. Normally if I am flying to a venue it is far easier to get a taxi – albeit costly – from the airport to the hotel. But this only works if it’s within reasonable and affordable travelling distance. A few years ago I was invited to speak at a book history conference in Germany, which would have been very good for my research interests and academic networking. But the venue was far away from the airport I’d be using, and a taxi trip would be quite impractical in journey time and cost terms. Nor could I rely on being able to access trains. So reluctantly I declined the invitation. Fortunately I was asked years later if I would like to contribute a piece to the conference’s collection of essays. I submitted my piece, and the book is due to be published in a month.

Even on the spot physical accessibility is a major concern. I normally now use two sticks, but when at a lengthy academic event I need to use my manual wheelchair – with husband along to help push – to manage to last the day. And getting into and around academic venues can be highly problematic.

One thing I should praise is I’ve found conference organisers usually very helpful in helping my husband attend as my carer. He shouldn’t have to pay, since he is just there to push me around and help me navigate obstacles like doors etc. He is also an academic, but in a very different field from me. So he’s not there to listen to the talks. Most conferences allow him to attend for free. That is enormously helpful, and not something I expected. We still have double travelling costs, but not paying double conference fees does ease the cost for us to a certain extent.

Though against that positive experience very few academic conferences offer daily registration fees. At least in my field – humanities – you typically have to pay for the full conference or nothing. And with me often only attending half or even a third of the conference this makes them particularly costly for the time and benefit that I’m going to get in return from the event. Sometimes I do get a reduced attendance fee though. I am particularly grateful to a recent conference organiser, who given how little I was going to be there, let me attend for free. And my husband as well of course. Thank you Drew!

Once there, if a venue has stairs to reach talks I cannot possibly attend. Sometimes organisers move rooms, which I am very grateful for when it happens. But it’s not just about the room where the talks take place, but also about getting into a toilet, and getting to meals. I have severe bladder incontinence from my brain damage, which in particular causes huge problems with urgency and frequency. I need to go to the toilet a *lot*. Having a wheelchair toilet beside the room is good, but if I have to go constantly during the talks – as has happened – it can be very awkward.

One conference that I regularly attend relocated to a ground floor room, with a toilet beside it, which is good. But the meals including lunch were elsewhere in the building, and I would not be able to get there, without major difficulty. It was far easier for me to stay trapped in the room during the lengthy lunch break, while my husband fetched food for me. This cut down the vital networking with fellow academics I could do, though thankfully some historian contacts specifically sought me out at these times, and had lengthy chats with me in the room on my own. Likewise the book stands of academic books to buy at this conference were upstairs. No way could I get there. So again husband was dispatched, with iPad, to take photos for me to browse, and also to bring any specific titles of interest down to me to look at. In this instance the Brill publishing rep actually came downstairs to take the order from me directly. He was keen to help, but it was still frustrating for me not to be able to browse through all the books in person.

Sometimes I attend conferences with multiple streams of talks on at once, in many rooms, even a dozen and more in one case. For these conferences I will always try to let the organisers know in advance which specific panels I want to attend, to make sure I can reach them ok on the day, and rooms can be swapped in advance if need be. But that only works if the messages are passed on correctly at the other end. At the SHARP 2016 book history conference in Paris, at the Bibliotheque Nationale, I’d checked all the talks in advance, and was assured by the organisers that I would be able to reach them. When I got there on the day I found a panel I very much wanted to go to was up many stairs, in a building without a lift …

But perhaps the worst aspect for conferences for me as a disabled academic is how intensive they are, and how crammed the days are. Often they start at 9am or even 8am, and continue until 6pm or 7pm, with a packed set of talks running throughout those periods. Very tiring in brain concentration terms, and much stamina needed to get through. I understand organisers are trying to fit as much in as possible for attendees. But it is exhausting, even for fit and healthy academics, who can find it wearing. For me it’s impossible to attend even a full day of this. So sometimes I’ll have to choose morning or afternoon, or if I am lucky afternoon and evening. Or I need to try to factor in some sort of rest time, which is difficult in a venue that I don’t know well, crammed with conference goers. I remember at an Ada Lovelace event in Oxford a few years ago that I went back into the main lecture theatre – then deserted – during lunch, to have a bit of a rest, and quiet time to myself, while everyone else socialised out in the lunch area. That quiet time refreshed me enough mentally to allow me to stay for some more talks in the afternoon.

I know that it’s unusual for someone to be as bad as me health-wise and still want to attend academic conferences. But the problems that I have described aren’t unique to me, and some of them – especially issues of fatigue and mobility issues – will be shared by other academics. Not all of these academics will be so obviously disabled. I remember that when one conference I mentioned above was moved to a ground floor venue this turned out to benefit quite a few other attendees, who would not have said anything before. So more accessible venues can benefit a wider academic population.

In practical terms I’m not sure how much longer I can keep attending academic conferences. And if I do it will have to always be done in a modest way, within my limitations. With travel costs, and logistical challenges, there is a trade off between costs and benefit. I will have to continue to decide if it is worth it for me. But for now it is. I just hope not to run into too many practical challenges in future conferences …

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Thoughts about attending this year’s Worldcon in Helsinki, Finland

A week ago my husband and I attended the 2017 Worldcon, this year held in Helsinki, Finland. It’s taken me a few days to write up my thoughts, but better late than never.

Every year the Worldcon – the World Science Fiction Convention (also covers fantasy, horror etc.) – is held in a different location. Often it’s in North America, so it’s quite exciting if it’s elsewhere. I was last at the Worldcon in London a few years ago, and was determined to go again if it came back to Europe. Two years ago I was a site selection voter for Helsinki, and delighted to be able to go there.

The venue this year was the Helsinki Convention Centre – the Messukeskus. As a Finnish convention the programme of talks had a substantial Nordic content, including some talks in the Finnish language. And it had a massive turnout from Finnish members. Normally a Worldcon held in a non English speaking location gets around 3000 attendees through the doors over the five days. This one had over 7000, including a vast number of local memberships sold in the weeks before the con. This caused problems for overcrowding in a venue which had been picked based on the smaller numbers. Rooms were over full, queues too long, corridors jam packed. But the con organisers took drastic action, and limited new members after the first day. I can’t remember this being done at a Worldcon before, but think it was a good decision, and it was effective in reducing the problem.

However even in such a huge event with thousands of attendees it did feel remarkably intimate. Even though we’re not active participants in the fandom scene we did keep running into the same people over and over again, including fellow Scots. It actually reminded me of being an undergraduate student at St Andrews in Scotland, where you could rarely walk into the town without running into someone you know … On that subject I met an online UK friend at the con – we hadn’t arranged anything in advance, but he saw one of my tweets saying which talk I was going to next, and was able to come and find me, and we had a great chat. I also had a very memorable breakfast chat with a US fan from Illinois.

As well as taking drastic action to cope with the overcrowding issues the con, as is usual for Worldcons, was highly organised around making it accessible. For example at registration on the Wednesday we – including me in manual wheelchair – were able to go straight to the special access desk, thus avoiding the longer and winding main queue. But there were still some problems. Lifts were probably too few for the numbers needed, and often busy, both in the main hotel building (which shared part of the convention complex) and elsewhere in the convention centre. Particularly problematic for us was a huge ramp in the main convention centre, which we had to get past to get to the main trade and exhibit halls. I could never have wheeled myself up there. And there were frequent problems with people walking along looking at smartphones, and threatening to walk into wheelchairs which could not just step easily to the side to avoid them. Very much a modern malaise of course.

Because of my neurological illness, similar to multiple sclerosis, I had to alternate days of total rest with days at the con. So allowing for flights there and back I could only attend the con on Wednesday and Friday, with total sleep days between. Luckily the hotel was quiet – because of my wheelchair and mobility issues we were allocated a room in the on-site Holiday Inn. This let me come back to the room and rest between panels, and manage as much as possible.

Before the con I studied the programme – released online some weeks in advance – to see likely things I might hope to get to. There were hundreds of talks to choose from, in ten or so parallel streams over five days. I tend to prefer panels with multiple members over individual speakers, unless I’m confident the one speaker will be good. And I always hope to have a variety of subjects covered in the panels I attend. My plan was to attend on the Wednesday and Friday, but also marked up Thursday and Saturday possible events, in case I was stronger on those days. We were flying home on Sunday afternoon, so after checking out from the hotel were going to head straight to the airport.

The first panel I attended was “Uses of Fantasy” in the Academic track, a 90-minute academic panel looking at research into audience responses to the Hobbit trilogy of films, especially in Finland. This was a fascinating start to the con for me, an academic historian who researched historic reading habits for my PhD. But I also increasingly dabble in cultural history, including in the modern era. The speakers were a mix of prof, post doc and PhD student, all interesting. All very different in presentation styles, but well linked. There was much amusement among the audience about Finnish attitudes to Hobbit films: essentially huge disappointment! And there was a lively Q&A session at end. I asked my first question of the con, and another questioner was also a Scottish lady.

My second panel looked at the processes behind the Helsinki Worldcon bid, from original idea through to the con of now. This had three speakers, somewhat variable in quality, indeed one I wish had spoken less, and given the others more space. But it was an interesting insight. I was also greatly amused by the tartan tammie wearing Finn on the panel with a Scottish twinge to his accent – turned out he’d done his language residency in Edinburgh, and clearly still felt close to the country. Nice!

I had hoped to attend more panels on the first day, but in the end couldn’t keep going for so long. So my next panel was on the Friday, looking at Caribbean SF. This was in a large room on the ground floor, and I was pleased to see that the chaotic queuing of the first day had improved. Again because of the wheelchair I got a seat at the very front. Originally this panel was intended to be three Caribbean authors including chair, but a 4th author was added. This was very very good – a rich insight into the language, culture and society of the islands, and what makes Caribbean Sci-Fi and Fantasy writing unique. Each of the writers – including luminaries Karen Lord and Nalo Hopkinson – talked about their own writing approaches. And, yet again, there was a lively Q&A at the end. I asked for tips re starting points for new readers of Caribbean SF, and got many useful suggestions.

Because of the still somewhat busy talks and corridors – even after steps had been taken – we didn’t try to attend a panel more often than every two hours. This gave time to get from the previous panel to the new location, ready to queue again. As a wheelchair user I was usually seated first, but it was still sensible to get there before things got too hectic. Both my husband and I had “Access” ribbons on our Worldcon membership badges – him as my assistant – to give us priority access through crowds etc.

My second Friday panel looked at the James Webb Space Telescope, one of many astronomy talks at this year’s Worldcon. The speaker in this case was NASA public affairs officer Jenny Knott. So not a scientist, but I think she coped pretty well with questions. It was rather unfortunate that this talk was scheduled directly against another astronomy one about Mars, but both my husband – whose day job is in space technology research for the European Space Agency etc. – and me preferred to try for the telescope one. Much of the talk was a pre prepared video explaining the science behind the telescope and the plans for its launch and deployment. The rest of the time was a lively Q&A. Many people, including me (on my 4th question in successive panels), asked about the risky aspects of the mission, and about testing etc. It’s using a lot of new technology; if things go wrong it will be very hard to fix long distance. The speaker couldn’t answer everything, but again I think she did pretty well, and offered to put people interested in knowing more in touch with NASA scientists who can help more.

I had intended to go to a panel on Finnish steampunk, but went for lunch instead, and another look around the trade hall. So after that I looked in the programme book to see what else that might be on imminently that could appeal, and ended up in a panel on “Writing for Video Games”. This had five writers for video games, including three writing for interactive fiction company Choice of Games. I’m writing interactive fiction games myself at the moment, and have been interested in them for 35+ years; so am always hoping for inspiration re my own writing, which made this panel ideal. It was an interesting discussion, well balanced among the panel, and touched on lots of issues, including the role of the writer, developing a character, and agency. Again it wrapped up with a lively Q&A. I was trying not to ask a question for a 5th panel in row, but gave up after 5 mins. I asked the panel for their thoughts on how easy it was for amateurs to get into this field, based partly on the long tradition of amateur writers in interactive fiction in particular. This led to further questions, where audience members were asking for more details of free / open source systems like Inform 7, Choice Script etc.

Note: both of the last two panels mentioned above can be viewed on YouTube. Because both were in room 208 they were some of the few recorded and streamed on the Internet for viewers long distance.

I should also comment on other aspects of the con. I’ve already mentioned how easy registration was for us. In a large part this was because of the access desk, but looking across to the main registration queue it seems to have been remarkably efficient for people in general too.

The Trade Hall is always a Worldcon highlight for me, and I was there on both days. The Trade Hall was quite small this year in the number of traders, I think. There were many Finnish language books on sale, which was nice to see, even if I couldn’t buy them to read myself! Also there were several sellers of steampunk items. I could easily have bought an amazing watch and some goggles …

The Exhibits Hall was rather sparsely filled, certainly in comparison with London. There were lots of posters, but for me from my wheelchair position they weren’t always easy to read. We did like some of the displays though, including Discworld figures, and a huge Discworld Great A’Tuin turtle.

All attendees get a registration pack, including a souvenir book and various bits and bobs. I was particularly pleased to see that the souvenir book – a large format paperback – includes good articles about the history of Finnish SF and F. And as a real bonus we got a specially published collection of Finnish weird fiction in paperback form in our registration pack. This would be good enough for me in itself, but it also had the bonus of having lists at the back of it of Finnish SF and F – both short stories and longer novels etc. – available in translation in various languages worldwide. More for me to read!

Overall I’m delighted with our time at the con. I could only be there on two proper days, though my husband managed four days. We both had a fantastic time, very rewarding, which in particular has left me with a legacy of much new fiction and non fiction for me that I now want to read. We got to visit a fantastic city – the Finnish people were extremely welcoming – and had a wonderful break. I hope it’s not too long before the Worldcon comes back to the Nordic countries, but this was a wonderful experience. Thank you.

Oh and for a glimpse of Helsinki, rather more so than the Worldcon itself, my husband has uploaded quite a lot of photos from his wanders, especially on the days before the con started.

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