(For my followers who aren't SF/F fans, Worldcon is the annual World Science Fiction Convention, which is held in a different city each year (local convention groups bid to run it). It's mostly stateside, but gets out to the UK about once a decade. This year the 72nd Worldcon was LonCon3, being held at the Excel centre in Dockland from 14th to 18th August.
For SF/F fans who don't otherwise know me, I'm also a disability rights activist, so I probably came at Worldcon from a slightly different angle to most people - about two feet lower and on wheels <g>).
|Worldcon Wheelchair Tetris|
Plotting to Attend
When I saw Worldcon was coming to London (I live just outside) I had an immediate flash of pleasure, rapidly dowsed by a bucketful of cold reality. I haven't been to a Worldcon since Intersection in Glasgow in 1995, I was at Eastercon around the same time, but I'm not quite sure if that was the one before or the one after, those are the last two conventions I attended. I had started to use crutches for my disability a few months before Intersection and it became rapidly obvious that fatigue was a major problem. My base physical disability (there are others layered on top) is Hypermobility Syndrome (HMS), which may also be Ehlers-Danlos Syndrome-Hypermobility Type (EDS). Having HMS/EDS (being bendy as we refer to ourselves) means all your muscles are working harder, all the time, as the tendons are too sloppy to hold joints together properly, so pain and fatigue are major problems. I'm fortunate in my HMS that I don't dislocate anything major on a daily basis, but minor subluxations - ankles, shoulders, wrists, ribs (ow! subluxed ribs are exquisite, even breathing hurts), sacro-iliac joints - happen all of the time. Ultimately I decided it just wasn't possible to squeeze fandom in while struggling to manage with daily life and work.
Then, late in June, I had a *headdesk* moment during a conversation with my mother.
Mother: "<mobility impaired family friend> is going down to London to visit her grandson, so she's hiring a wheelchair."
At that point my participation in the conversation went onto automatic pilot.
"Hiring a wheelchair" *Headdesk*, *Headdesk*, *Headdesk*.
It was far from the first time I've thought of using a wheelchair, I've even discussed it with medics in the past, but perky physios tend not to approve of voluntarily going wheelie and historically family attitudes towards wheelchairs haven't been entirely healthy, so, despite having given it considerable thought, I'd always let myself be put off. But hiring a wheelchair just to get to an event had simply never occurred to me, and hiring that chair could then be a lever to change the way family and medics think about me using one - wheels within wheels, on wheels.
Things did not proceed smoothly. First of all I promptly badly sprained my ankle (I fell off my wheelie bin - don't ask!), and it was the 'good' ankle, cue four weeks in a walker-boot which I finally got out of about a fortnight before the con, and the ankle still isn't quite right, so doing the Con on crutches was even less practical than usual. And then there's me. Deciding to do something is easy, making my neurodiverse self actually do it is rather more difficult - the neurodiverse label is new this year, I was talking to a psych about pain management and suddenly realised he'd segued into assessing me for Aspergers. There's no formal diagnosis, the local Autism service gets 10 times as many referrals as they can handle, but just knowing a psych acknowledges it isn't 'just me' is a tremendous relief, it just doesn't make dealing with people any easier. Worldcon membership, online form, no problem, and I live close enough I didn't need to arrange accommodation, but actually sorting out a chair? Let's push the deadline again.
I finally approached various powerchair hire firms the week before the Con, one had everything out on hire, the other two kept pulling more and more add-on charges out of the small-print hat. Hiring a powerchair for the five days of the Con was going to cost me £250, which is the same again that membership and travel were costing me and enough to buy a medium-price, non-customised foldable chair, or enough of the percentage of the price of an individually fitted, rigid-framed manual to be noticeable (people underestimate the cost of wheelchairs, you can spend over £10,000 on a manual chair if you need all the bells and whistles, a powerchair with the same add-ons will cost more than most cars). So I settled for hiring a manual chair through LonCon's access arrangements with Event Mobility, which only cost me a much more reasonable £40 for the five days. I could also have hired a scooter for £100 through them, but my bendy shoulders don't like the hands-outstretched position a scooter's tiller demands.
I rolled up at the Excel bright and early on Thursday 14th, and I have to say Access was excellent. I was greeted by one of the volunteers before I even reached the registration queue, which they told me was 45 minutes long at that point, and whisked away to the Access Desk, where I was given a seat while the volunteer dashed off to pick up my badge and registration packet. Even the failure of the Access ribbons to appear was being dealt with courtesy of improvisation with tape and a marker pen in the best traditions of fandom. A photographer approached the Access people while I was sitting there and commented he worked within the Convention industry, and had never seen as comprehensive an access policy as LonCon was providing (which is kind of scary when you think we had roughly that level of provision in place 19 years ago at Intersection).
Having done Access, I moved over to Event Mobility at the next table, and had a heart-in-mouth moment when their guy announced that he had only brought attendant-propelled chairs (i.e. without the larger wheels for self-propelling). I honestly don't know what he can have been thinking, an indoor event like LonCon is absolutely perfect for self-propelled chairs, and a self-propelled chair can always be attendant-propelled, while the reverse isn't true. Fortunately he was wrong, he had brought at least one, and even better he was quite happy for me to hang onto it right through the Con, I'd expected to have to turn it in each night. On the downside, adjustment of chair to user wasn't ideal, the footplates just couldn't be lowered enough to suit my legs, but I was able to improvise by using the wedge cushion I normally use in the car (which fortunately I'd brought), and reversing it so that my knees were boosted a couple of inches higher. (And if you consider at 5'8" I'm not exactly long-legged in comparison to many people...).
And so off to panels, and the fan village, and the dealer room, and all the rest of the Con....
I hadn't expected to be travelling with the chair, but the DLR is in theory wheelchair accessible - I say theoretically because every time I tried to get on at Stratford International I ended up with front-castors jammed between platform and train. I did have to frantically lunge the first time that happened to stop a 'helpful' passer-by trying to lift the entire chair, with me in it, by one of the armrests. This would have handily ripped the entire side of the chair off. Offers of help are always appreciated, but do always ask first, and be understanding if we say 'no thanks'. I've had friends have major damage done to their chairs by people who were 'only trying to help', and others abused for turning down offers of help - something I've faced myself on crutches. But other than that, the DLR was pretty much a dream to use - OTOH a powerchair-using friend said it was effectively unusable with her chair due to similar problems with wheels catching.
Using the train between Stratford International and Chatham, where I live, was somewhat more of an adventure. In theory you're supposed to ring and book passenger assistance 24 hours in advance, to ensure someone is there with the ramp when you need it to get on or off (as there's a drop of about a foot from carriage to platform), but if you don't know when you'll be travelling, or even that you'll be travelling with a chair, as happened on Thursday for me, then you're at the mercy of the railway gods. Fortunately I've enough wheelie friends to know what can happen, and if even Baroness Tanni Grey-Thompson can be left having to throw her chair onto the platform and crawl off a train at midnight, then best to be prepared. I specifically didn't ask for assistance that first night, just to confirm I could get on and off with the chair if I needed to, the rest of the time I did.
Ooh boy, talk about rolling the dice and casting your fortune to the fates! I don't want anyone to read this as criticism of the station or train staff, they were without exception pleasant and willing to go out of their way to make sure I got where I needed to, but the system isn't quite working. Of the eight journeys I made, assistance didn't turn up to get me off at Chatham on the Friday night, so I had to climb off while having passengers get the chair down for me (not having brought my crutches - because I had the chair! - and electing to wear ankle braces meant this was a lot more difficult for me than it had been on the Thursday); while on Saturday two guys turned up with the ramp, but at entirely the wrong station.... It then took the guard 15 minutes and three different numbers to try and raise someone at Chatham to let them know I was coming. The same thing nearly happened heading to Stratford on the Friday, the on-train staff assuming I was going to St. Pancras, as there was a passenger with booked assistance to there from Chatham and they simply assumed I was him when he didn't turn up, while on Monday Chatham weren't able to raise Stratford and had to ask me to ask the on-board staff to try and raise them. C'mon, Southeastern, that's four trips out of eight with issues - I just hope the safety critical messaging is more reliable!
Once back in Chatham, my house is only a couple of hundred yards from the station, but up an ever-so-slightly steep hill. There was no way I was pushing up that, so I waddled up each night using the wheelchair as a walker. Coming back down in the mornings, though... there's that temptation to think 'how difficult can it be?' Difficult, no; dangerous, possibly; scary, Hell Yes! Again it's fortunate I know enough wheelies to know to brake by pushing palms against pushrims rather than trying to use the actual brakes or to grab the pushrims, and that I was already using a pair of wheelchair gloves with my crutches, but there is a limit to how hard you can push to decelerate, and if the bank is steep enough then you may be accelerating harder than you're decelerating. I hit the actual brakes when I realised it was getting away from me, and the right bit harder than the left, cue 90 degree handbrake turn.... I very nearly ended up catapulted into rush-hour traffic! That prompted an urgent discussion with wheelie friends, and advice to use at least one foot on the ground to brake, as well as the pushrims. That did the trick, but there was still one section at the bottom of the hill that must have been just that little bit steeper, where you felt your foot skidding on the ground, the wheelchair starting to accelerate, and your heart starting to beat faster.... If I ever have to do that trip down to the station regularly, I'm driving ;)
The Curse of the Pedestrian
Worldcon didn't have quite the same dangers and misadventures as my journey home, but that's not to say you didn't need your wits about you! After the Paralympics, LonCon3 had the highest percentage of disabled crowd members I've ever seen, yet a lot of people seemed blissfully unaware of the wheelies, wobblies and scooter users amongst them. And when I say blissfully unaware, I mean to the point of trying to walk through us. Within the first couple of hours I had had to take evasive action from two people walking at high-speed while texting, and the rest of the con wasn't much better. People with mobility impairments simply can't get out of your way quickly, particularly in crowds, we need you to be the ones to take evasive action, and to look down far enough that you can notice someone who only comes four feet off the ground or less (or in the case of one person walking rapidly towards me while staring at his toes, look up!). And it's not just wheelies who need you to be aware, I was passed by several semi-autonomous, independently-roving kidlets, some of whom didn't top 24 inches....
People were in general perfectly willing to help and to step out of the way - thank you! - but if you're going to grab a door to help, do warn the disabled person, we may be leaning on it or otherwise relying on it to get through.
Another phenomenon I noticed was that I mostly ended up talking to other wheelies. That might just have been my neurodiverse awkwardness kicking in, but it was largely other wheelies initiating conversations with me, and the one non-wheelie I talked to extensively was another neurodiverse type I'd arranged to meet up with in advance (Hi, Marieke! <waves>). Maybe it was worse for me as an effectively first-time con-goer, but please, don't just look down, talk to us, just as you'd talk to anyone else.
I haven't just given up on going to cons, I've given up on pretty much everything but a once a week meeting with friends for coffee. There's not much point in going to a gallery, say, or a museum, a concert, or the theatre, if you're in so much pain by the time you get to the activity that you simply can't enjoy it, doubly so if you're then laid up for several days because of it. I do occasionally push my luck deliberately, my pain management people says you have to in order not to get cabin fever, but my longest recovery period on record is a full year, and I'm not certain I ever got everything back after that one - OTOH, how many people have spent time gliding in the Alps, rafting down glacial rivers or sailing in a Force 9? Sometimes you just have to think yeah, I'm going to bite the consequences on this one.
So when I planned on going to Worldcon, I was planning on it meaning a certain amount of pain, because that's what being out and about always means, but once I had the chair.... Off the train at Stratford, over to the lift, up to the concourse, whizz over to the DLR, lift down to the platform (unhook chair from hole between platform and train), off at Canning Town, lift down to the ticket hall, lift back up to the other DLR platform, slalom through the waiting crowd, roll onto the Becton train, roll off at Prince Regent, lift up to the concourse and wheel into the whirlwind that is Worldcon. And no pain. I seemed to be spending an inordinate amount of time in lifts, but lifts versus pain, Hell yes!
I tended to flag by about 7PM, so I missed the late-night stuff I might have caught if I was staying on site, but in five 9:30AM to 7PM days, with 90 minutes of travelling tacked on at either end, I experienced less pain than I would in any normal day of activity, in fact than I sometimes experience after my Saturday lunchtime coffee sessions. I'd expected the chair to help, what I hadn't expected was for it to make a massive level of difference.
As I've said, there were quite a lot of wheelies in the Worldcon crowd, and as I expect to be in the market for a chair sooner rather than later, I was studying what I could see around me. I was well aware that my hire-chair was less than ideally suited for me given I have major issues around sitting comfort, though whether it was worth the cost of going up to a customised chair I was still in two minds about given I was only contemplating occasional use (list price of a bottom-end, non-customised, folding manual, £150 to £200, list price of a bottom-end, customised, rigid-framed manual, £1200-1500). One chair I noticed pretty quickly was a rigid manual with a Jay custom back and a headrest. Given I have damage to both lumbar and cervical spine (bendies positively collect joint injuries), I immediately started wondering how useful the customised set-up was. I then ended up behind the chair and its user in a panel, and when they wheelied back onto the chair's anti-tips to use it as though it had tilt-in-space, a feature that lets you lie back in a chair, which an experienced wheelie friend has suggested I need, and which normally adds a couple of thousand to the cost, I was in love (with the chair, you understand). At this point I was positively stalking that chair.
In one of those serendipitous Worldcon link-ups, the chair's owner, Kaberett, and I ended up together in a group headed for coffee after Charlie Stross' The Ruling Party panel on Monday. Just to boost the serendipity even further, the group also included my online friend Trialia in her powerchair, who I had never physically met before, and it turns out we're all neurodiverse bendies. Anyone want to work out the odds on that one? Packs of wheeled bendies stalking the halls of Worldcon did draw a few glances (especially when one or other of us popped up out of their chair - yes, most wheelies can walk to some degree), though probably not as many as we'd have gotten in the Real World (TM). I had to laugh once we were sat around a table with coffee when I realised that all three of us were delving into the depths of the bags on the backs of our chairs, and that none of us were bothering to turn around to do it - there are occasional advantages to being bendy!
Anyway, having been introduced I confessed to my stalking, and Kaberett pointed out we were both similar sizes, so popped out of their chair and said 'try it'.
O! M! G! It was like pulling on a perfectly fitted glove. Well, nearly perfectly fitted, I'm probably a fraction wider across the back, but hips, head, even ribs were all suddenly supported in exactly the way I needed, and the balance of the chair as I moved was so much better than the hire-chair (Kaberett commented they'd looked at the hire-chair earlier and thought 'hope he didn't pay money for that').
Apparently my face was a picture, "you looked like things suddenly didn't hurt and weren't as exhausting! It was great". Now if you consider that was how I was already feeling while trying out the hire-chair vs crutches, and that Kaberett's chair wasn't quite a perfect fit, then it really does show just how much difference a properly fitted chair can make. Just that brief trial made me completely reassess what I wanted from a chair and how much I was willing to spend to get it. I'm not joking when I say it could potentially be life-changing.
Worldcon Wheelie Woes
While Worldcon was overwhelmingly a positive experience for me, that's not to say that it got things perfectly right when it came to disability. Issues started pre-Con with a negative use of 'autistic' in the description of the panel on German SF. Kaberett flagged that one up and the reaction was exactly as it should be, a correction to the website and an apology in the Pigeon Post that they couldn't correct the already printed what's-on guides.
There were a bunch of issues around wheelchair/scooter spaces. I was still finding rooms that didn't have any wheelchair spaces marked (London Suite 1) as late as Sunday evening (Bear's reading of 'Shoggoths in Bloom' was one of the highlights of my Worldcon, I love her work and I love that story), and there was obviously a blanket assumption that no wheelchair user could possibly have both a hearing and a mobility impairment, which meant that wheelchair spaces were generally no further forward than the middle of the room and often entirely at the back. I know several wheelchair users who have both hearing and mobility impairments, indeed whose impairments are co-morbid (meaning that medically they are expected to often go hand in hand with each other) and I met a couple of very prominent members of fandom who also met that definition over the weekend. There were definitely complaints on Sunday that the allocated seating in the auditorium for hearing-impaired fans during the Hugo Awards was on the opposite side of the stage to the podium. I was at the back of that block of seating and I certainly struggled to see Geoff and Justina's lips given how far away they were (and given they were name-checking at least one of the people struggling to lip-read them...).
A further problem with the provision for wheelchair users was the apparent assumption that wheelchair users don't come in couples....
Equally there seems to have been little thought given to wheelchair-using panel members (I didn't actually see any, but there were certainly several diversity panels which as a disability rights activist I potentially had the background to be on). I was corrected after suggesting there was no ramp for a panel that specifically addressed the absence of disabled people in fantasy (it was hidden at the back of the podium), but for many of the panels in the smaller rooms the panel was tight against the back wall without sufficient space for a wheelchair user to access their spot. Sitting the disabled panel member semi-detached at the end of the table isn't really an acceptable solution and a major issue for those of us who have problems looking to the side).
And what goes for the panel rooms goes doubly so for the main auditorium. What would we have done if a wheelchair user had won a Hugo, or nominated a wheelchair user to accept for them? The stairs at the front certainly weren't accessible, I have no idea if there was a ramp at the
entrance back, but that certainly wouldn't have been ideal. Would we have
been looking at another Tanni Grey-Thompson /Sports Personality of the Year
2000 moment, with the winner having to be carried on stage by a horde of hefty
volunteers? Any access solution that doesn't provide for disabled people to access
the space alongside non-disabled is inadequate at best, and for a newly
constructed edifice, a full generation on from the Disability Discrimination
Act 1995, just not acceptable.
As for the bright idea of labelling wheelchair spaces 'Reserved for Mobie' - I overheard at least one wheelchair user asking who this 'Mobie' was and had a discussion with several others as to whether it was possibly slang for a wheelchair in another European language, c.f. rolli in German. If you're going to use slang, can it at least be slang the relevant people will recognise?
Then there was the great scooter-shaming fiasco in Pigeon Post 7, which saw scooters banned from the main elevators, and which had several disabled people I encountered genuinely angry at how they were being addressed. As far as I can recall, I actually rode those elevators with someone in a Class 3 scooter (the biggest, the type Event Mobility was hiring out) almost as soon as I'd arrived, and it took my chair and their scooter without an issue, and that was while I still trying to remind myself how to steer a chair after not using one in several years. Even if there was an issue of physically fitting some scooters into the lifts, Class 3 scooters are only a fraction of all scooters (admittedly a large one). I saw at least one Luggie being used, and that's a Class 1 scooter that's smaller (and slower!) than my manual chair. I'm very aware of issues around the safe speed that scooters can be used, and at no point did I see a Class 3 being used in its on-road 8mph mode, or in its 4mph pavement mode at a speed I would consider excessive for the people around - on the other hand I did, as I noted earlier, see an awful lot of pedestrians walking around without due care and attention for the wheelchair and scooter users around them. Beyond the need for the ban, there was the wording used that pretty much criticised every scooter user at the convention. Every wheelchair user I spoke to was irritated by it, never mind the scooter users.
Some of this criticism may seem a little harsh, it doesn't change the fact that I'm very grateful for all the access provision that was made, and for all of the people who opened up spaces for me, held doors and whatever, usually without needing to be asked, but seeing a solution that's 85% of the way to being perfect just brings out a drive in me to get it that last 15%. And LonCon3 may be over, but the access lessons at each new convention we learn need to apply to every convention that comes after, starting with Shamrokon this weekend. (And if you think this is harsh, just wait 'til you hear me on IDS and the DWP <g>).
There are a few mobility issues that weren't down to LonCon, but are really issues for Excel London, worryingly one of those was a basic health and safety issue. I think I used pretty much all of the accessible toilets over the course of the convention. In almost every one of those, the emergency call cord was knotted at least 18 inches clear of the floor, or looped around the grab-rail to the side of the toilet, in some cases it had been cut off at that height. This is a common problem with disabled toilets, but a serious one and not one I expect to see in as prominent a facility as Excel. Part M of the Building Regs, Diagram 20, specifies that the lower pull bangle on the emergency call cord must be 100mm (4 inches) from the floor, this is because the cord must be accessible to someone who has fallen while trying to use the facilities and is unable to lift themselves from the floor. For someone with limited arm use, this can only be guaranteed by having the cord at almost floor level. Almost inevitably knotted, cut-off or looped cords are the result of inadequately trained cleaning staff who simply see them as a useless irritation because no one has ever explained to them why they are there. It should be on the cleaning supervisor's checklist to ensure every cord is accessible at floor level every day, and it should probably be on the Access checklist for every con. Equally it should be a checklist item to assure that the transfer space to the side of the toilet (the side with the liftable grab-rail) is clear of obstructions to the back wall as a wheelchair user may need to use that space to transfer from chair to toilet. Blocking them with waste-bin and sanitary waste-bin, as with most of the loos I used, not ideal....
It shouldn't be so difficult to get disabled loos right, but apparently even Dyson can cock it up when it comes to wheelie human factors! Those Dyson Air-Blade handdryers, the ones screaming like the entire toilet was about to lift into orbit? Cool as all hell, but WTF do I put my feet and knees?
Crossing back and forth between the con and Excel's responsibility, the doors into the rooms were marginal for getting a chair through, I lost count of the number of times I barked my knuckles on the door frames and on a couple of occasions was lucky not to rip-off significant chunks of flesh. Yet all the doorways had either full or partial double doors. The problem was many of the second doors, whether full or partial, seemed to be bolted shut most of the time. Why? On at least one occasion (the door into the London Suite) I saw an Excel staffer open the second door for me (thank you!), but then rebolt it afterwards. *headdesk* why? You've just seen I need both open and I'm probably coming back shortly... As a general message to volunteers, if there is going to be a wheelie coming through, please make sure both doors are open, their fingers will thank you!
On the irritating rather than dangerous level, if a bin blocks access to a lift button, as was the case with the main lifts, to the point that you have to sit a staff member there to press it for the wheelies who can't otherwise reach it, it's probably a sign you need to move the damned bin! And finally (at last I hear you all cry!) that blasted textured surface outside most of the lifts on Level 3 feels like you're rolling your bare backside over a cheesegrater!
Wheeling to a Close
I thoroughly enjoyed my time at WorldCon, it was just such a stimulating five days, stuffed with all the panels I went to on diversity, YA fiction and the business of writing (I'm planning further posts on all three of these strands) and interspersed with meeting all those people who make fandom such a delight: Marieke Nijkamp and all the good work she and her co-conspirators are doing with We Need Diverse Books; Trialia, who I've known online for years, without realising she's a filker and general fan, not just a Whovian; Kaberett, somehow managing to note down everything happening in some of the most complex panels, and whose wheelchair may literally change my life; and the chance to briefly catch up with Justina Robson - when Geoff talked at the opening of the Hugos of meeting Justina at Lumb Bank all those years ago, I was there on that same course, and if any one of us was obviously going to succeed, it was Justina, and I'm so glad that she did.