Worldcon: The Business of Writing

One of the deciding factors in my going to Worldcon (beyond the whole actually being able to get there thing), was my decision a few months back that I needed to get serious about my writing. With 150,000 words written in the last three months, a first draft novel sitting maturing on the shelf and several other projects underway, it was clearly more than time to start getting professional advice. So when it came to picking panels to attend, the choice was almost universally related to my writing needs, and fell into three groups: Young Adult Fiction, as one of my projects is clearly YA, but it's not an area I've been extensively exposed to recently; Diversity, as I'm clearly a diverse author writing diverse fiction (I'm disabled, and my writing tends to reflect that); and the pure Business of Writing.

I took a bunch of notes, though choosing to use my tablet without its keyboard wasn't ideal - it insisted on trying to spellcheck anything it didn't recognise as it was entered, which it doesn't do when used with the keyboard, and that drastically reduced my notetaking - particularly as my lousy coordination combined with needing a new pair of glasses meant I was hitting the wrong key on the screen more often than not. I'd have taken a whole lot more notes given the option, and next time I know to use the keyboard. This piece expands on those notes I did manage to take and hopefully it will be helpful to people who couldn't be there as well as being a vehicle for organising my own thoughts. As I was primarily focused on logging ideas, and fighting a word-processor that barfed over any name not in spellcheck, a lot of this is unfortunately going to be unattributed points, and quotes shouldn't be assumed to be verbatim. I wish I'd been able to get people's names tagged to points, it feels slightly disrespectful not to have them identified, but I'm stuck with my notes and my memory, so apologies to anyone whose points I'm using without appropriate attribution, and especially to anyone whose points I've mangled.

Finding An Agent

Betsy Mitchell (m), 

Jacey Bedford, 

Joshua Bilmes, 

Ian Drury, 

John Jarrold

A great query letter is all you need! Write a great manuscript and the rest doesn't matter! Network at conventions and you're in good shape! These nuggets of advice and dozens like them float around the writersphere as gospel. How many of these have a ring of truth? What is the secret to finding an agent? And what does an agent do once you have one? Our agents will decrypt the process.

The Finding an Agent panel featured a stellar line-up of editors, and when asked the question whether people in the room were looking for an agent, pretty much everyone in the room held up their hand, which made for a very focused session.

When it comes to genre publishing, John Jarrold has pretty much done it all, and listening to him speak you could understand why. If he is remotely as forceful in his opinions of why a book should be published as he is in saying what he expects from a prospective writer, then I want him in my corner! Joshua Bilmes of JABberwocky was more soft-spoken, but made a whole bunch of interesting points. Ian Drury seemed the quintessential agent's agent, everything about him confirming that his agency has been doing this for over a century, and knows the business inside out. Betsy Mitchell kept everyone in order as moderator, while Jacey Bedford was stuck with being the token writer on a panel of agents.

JJ: told us he wants a submission to "Wow me." And that when you're done with that first draft, put it away for at least a month before you even think of editing it.

JB: said he wants writers to 'Be interesting as a person'. As agents are effectively choosing workmates, I guess that makes an awful lot of sense.

It was emphasised that you need to be willing to work with the agent and chop entire characters and chapters if that is what they think the work needs. (And if you aren't willing to work with the agent, why do you really want one?)

The Absolute Write Water Cooler forum was flagged up as a useful resource - it's an online community of writers, editors and agents.

Research, research, research was emphasised in selecting agents to make a pitch to - there's little point in pitching a YA fantasy to someone who only handles factual books. Make appropriate choices.

A particularly interesting suggestion (from John Jarrold if memory serves) was to go and check the Acknowledgements in recent works. Not only does this identify agents working in the field, but it lets you see who they're handling and areas where they work.

Building on that last point, referencing what you found in Acknowledgements in your query letter will then help establish that you have done the research and have the genre background - but that doesn't mean you can make it longer than a single page!

It was heavily emphasized that you should individualise queries, and the need to get the agents name right was equally heavily emphasised - which suggests a lot of people are falling at this most basic of hurdles. A less obvious point was to tell the agent how many other agents the pitch is going to in this round. John Jarrold suggested half a dozen agents at a time is an appropriate number.

If an agent asks for exclusive submission then it was agreed that the writer should expect, and if need be demand, quicker turnaround.

There was pretty much unanimous agreement that agents should reply to a pitch, even if just to say 'no thanks', though it was clear that there are agents out there who don't.

Don't resubmit a reworked manuscript to an agent unless they explicitly say they want you to resubmit it given certain changes.

It was emphasised by several people that the industry is very subjective, agents will reject stuff others are desperate to represent, and rejection doesn't necessarily mean the story doesn't work.

Even if you're trying to market a book, you should always keep writing something new, though one suggestion was that you probably shouldn't write a sequel until the first volume is sold.

JJ: It took Iain Banks 14 years and six novels to sell his first novel.

JB: Younger/junior agents may be more willing to take a chance on an author, but eventually become more selective as they learn what will sell.

JJ:  70 per cent of the market is still print, and while epublishing is growing, self-publishing is a turn-off to agents.

Less obvious advantages of agents are that they know the business, and can cover you versus business errors, because they know the mistakes publishers make. Ian Drury noted he will sit down with a calculator and check what sales should translate to in royalties, and that in doing this he has caught errors being made by publishers in payments to his authors. Agents also provide access to foreign markets , which can add up to be multiples of the original deal, and can save you rights to sell elsewhere that you might not get if you try to deal directly with a publisher. John Jarrold noted that while publishers have standard contracts that will be offered by default, they will often have customised contracts with individual agents.

Some agents don't get heavily involved in the editing process, others do and are better for it.

JJ: sees 30 books a week, but only takes on 4 authors a year

If an agent wants exclusivity on a manuscript then three weeks is about appropriate.

Even if an agent wants to take on your work, it was suggested that you need to be sure that you want to work with them. The Writer's Market has a list of questions for agents, take a look at it and pick the ones that are most appropriate to your needs - but don't demand the agent answer all 20 of them.

We were reminded that agents are facing the same issues in dealing with publishers that writers can face in getting and dealing with agents. It can be 18 months for an agent to get a reply to a pitch from a publisher, and that reply can be a sale.

It's about a career, think about your long term strategy. In trying to develop our careers we can write all over different genres, but only until we're dealing with agent and publishers, at that point we will be locked in by the market.

Asked how many authors they represented, John Jarrold said 40, Ian Drury 34, while Joshua Bilmes said JABberwocky represents about 50 spread over four staff.

You can look for an agent and send publishers submissions in parallels.

In answer to a question I asked - how can we tell where the market is going, for instance the comment that Urban Fantasy is oversubscribed and contracting, when we're only seeing decisions 18 months to two years after the publishers have made them when the books appear on the shelves - John Jarrold suggested analysing publishers' release listings specifically for books by new authors in order to determine market directions.

Many publishers no longer have slush piles and will only take agented manuscripts. This is pretty much across the board for the major UK houses, though some US publishers will still buy from the slush pile.

Master of Dark Arts: an insight into editing for writers

Stephen Jones, 

Lynda Rucker, 

Stephen Jones is interviewed by Lynda E. Rucker about editing short dark fiction, providing insight for new and current writers. Pointers and pitfalls will both be covered, as well as how the writer/editor relationship works, and what professional writers and editors should expect from each other.

Unlike the other sessions this was set up as a one on one interview, with Stephen Jones being interviewed by fellow writer Lynda Rucker. As a result all comments below are by Stephen Jones. The discussion opened with SJ discussing his career before moving on to talk about the details of publishing and being an author and an anthology editor.

You're not published until someone else publishes you!

It may no longer be possible to have a career as a writer, or at least as only a writer - so don't give up the day job when you make your first sale!

Think of your long term career goals. SJ noted in the opening discussion of his career that his initial goals had been to be published author, to be a published cover artist, and to be an award winner, all within his twenties - which he achieved.

Publishers no longer build author careers in the way they once did.

There's not a lot of money in writing.

Authors used to get a percentage of the cover price, they now get a percentage of what the publishers receive from the bookseller.

The lead time for a book is at least 7 months, mostly you're selling projects two years ahead

In constructing a story:

• What do you want to achieve with the story?
• Have an ending in mind.
• Always a compromise (unfortunately I didn't note down what it is a compromise between, apologies)
• Need subtext - Horror (and other genres) should reflect society around us. SJ says he isn't seeing a societal subtext in recent stories. Your aims should be 1. Entertainment, 2. subtext.
• Your target audience is a 13yo who doesn't read books and who you want to change to an active reader
  
  

Always have a professional goal

You need to read in the genre.

You also need to read outside the genre, we're not a ghetto.

When you're starting out, you don't need an agent - it isn't a difficult job to get one if you have a deal.

Short stories are a great calling card.

If you have a chance, don't be afraid to pitch in the bar, but buy them a drink!

Follow Locus Online.

Make it as easy as possible for editors and agents - get spellings and punctuation right.

Always have an interesting title

Always have a hook in the opening, and then another hook...

Get the best cover you can.

What Does an Editor Do?

Ginjer Buchanan, 

Lee Harris, 

Abigail Nathan, 

Steve Saffel, 

Jane Johnson

Publishing is like Rubik's Cube, only with more words and less logic. What exactly goes on in one of these publishing houses? Do editors do more than edit? How do sales and marketing interact with editorial? This panel will take a look into the hallways of publishing, pulling back the curtain to reveal the mysterious Oz that controls all the books. Is it a grand mysterious wizard behind there or just a bunch of word gerbils spinning their hamster wheels like the rest of us?

My notes for the editors' session somehow ended up split into two sections, with other stuff in between, I think I've gotten everything put back together as should be, but it's just possible something may have slipped in from another session. On the other hand everything seems relevant.

The session was helmed by Ginjer Buchanan, fresh from winning the Hugo for Best Editor - Long Form. Alongside her were Jane Johnson Publishing Director at Harper Collins, Lee Harris, who heads the new novella imprint at Tor.Com and is the former Senior Editor for Angry Robot (and was a 2014 Hugo nominee for Best Editor - Long Form), Abigail Nathan, who is a British freelance editor now operating out of Australia, and Steve Staffel, senior acquiring editor with Titan Books.

There was a discussion of the decisions in buying a book, estimating sales, involving production and sales staff, etc. Unfortunately my notes here are unintelligible, so I'm stuck with just the broadest brush of memory and no detail. Mea culpa!

Margin: Publishers used to aim for 53%. That's a dream nowadays.

You can have a massive ad campaign and associated reviews in the press all ready to roll for a book you're convinced will be massively successful and then the Queen Mum dies and your publicity campaign crashes and burns.

Editors/Publishers are thinking a year and a half ahead, they are already setting their 2016 releases, 2017 for series.

Bestsellers: the numbers required to make a bestseller list are very variable and depend on factors such whether the latest Pratchett is in the list. There is a big fall off in numbers between the Sunday Times number 3 and number 10.

The best-selling fantasy book last year was George RR Martin's latest Game of Thrones and sold 166k copies, the bestselling non-genre book sold 600k copies. The best-selling SF book sold 51k copies. ISTR it was noted in one panel, probably here, that Amazon (and other e-publishers?) won't release their sales figures, so these figures are print only, without e-publishing.

Epic fantasy is 43% of the market

For British publishers, the Commonwealth market is important, Australia and New Zealand represent up to a third of sales.

A lot of authors have day jobs....

E-books are now 40% of market, probably more for SF/F

Of books bought from Amazon for under a pound, 82% are never read further than page 10.

Lee Harris talked a little about Tor's new novella line, which he had literally just taken charge of, they are looking for work in the 17.5 to 45k word range and seriously looking at serialization.

It was noted (admitted!) that not all editors are good copy-editors

Editing was defined as a three pass process.

• Global edit pass - the acquiring editor will talk about the plot and characterization, so looking at structural changes rather than grammatical ones.
• Line edit - this looks at consistency, overuse of particular words, and may make minor textual adjustments
• Copy-editors - this is a detailed pass looking at grammar, spelling, continuity

In addition to Acquiring and Copy Editors, big houses may also have a Managing Editor who oversees and passes stuff around between the staff.

Abigail Nathan noted that copy-editors can end up doing a lot of fact checking, including physically going to places. Google Streetview was mentioned as something very useful for checking landscape/environment facts, which made me smile as I've been using it in my own writing for a while.

When we say 'Editors' we generally mean acquiring editors

We were pointed at Stephen King's Misery as a masterclass in characterization

Junior editorial staff are building a rep, so possibly a more accessible target. At the bigger US publishers they often have to look at the slush while senior staff often only take agented manuscripts.

The agent relationship is very intimate, the agent needs to be the right person for you. Editors can also be focused on being the right person with respect to the author.

Lee Harris commented that Angry Robot have an annual 30 day submission window for unagented manuscripts, last time they got 991 novel submissions

Editors need passion, they frequently spend all day project managing and often only get to work on manuscripts after hours.

End Notes

There were other business of writing panels, but there were times I had solid arguments as to why I should be in eight different panels at once (I'm not exaggerating, though mostly it was only three or four) and it was just impossible to get to more than a fraction of the panels I wanted to attend, particularly when I was trying to satisfy three different strands of interest. I found the three panels I did get to tremendously valuable and I hope these notes will be similarly useful for people who couldn't be there. I've linked each participant to their bio page on the LonCon3 website and if you're at all interested in becoming a writer then I'd strongly suggest taking a run through their websites and following those of them who are on Twitter.

Ten Novels

So the challenge passed to me by Deborah Whitehead was to name "ten books that have stayed with me for one reason or another throughout my life." It's an interesting challenge, but I'm going to play fast and loose with the counting.

Pride of Chanur and Foreigner, C J Cherryh

C J Cherryh has been a favourite for as long as I've been reading her books, and one of the reasons is her detailed worldbuilding, or perhaps I should call that species building, as that's what she does best. Pride of Chanur and Foreigner share similar structures, both the starts of series, both featuring male humans dropped into an alien species which they aren't fully able to understand. Pride takes the story from the alien side, Foreigner from the human. And in both affection successfully crosses the species barrier, raising deeper questions of mores and sexuality.

Cyteen and Regenesis, C J Cherryh

Having picked a pair of Cherryh books for what she does with aliens, a further pair for what she can do with humans. Cyteen and Regenesis deal with the death of scientific genius and political icon Arianne Emory, and the childhood of Arianne Emory 2, as her project to recreate herself in not just body, but mind as well takes form. But who killed AE1, and are they still out there, targetting AE2... All the major players are psychological manipulators, but they're about to be outwitted by their own creation.

Little Fuzzy, H Beam Piper

The only book I'm listing from the Golden Age, Little Fuzzy has all the strengths of pacing and concise storytelling that the best of the pulps offer, but with the addition of a sense of the environment that seems more post-80s than pre-60s. A prospector out in the wilds of a backwater planet realises there is actually an intelligent native species, a fact which will destroy the planet's economic value if it becomes known, but the entire planet is a company town, and they don't want to lose their economic prize.

Pattern Recognition, William Gibson

A book I try to reread at least once a year, and the start of a loose trilogy (with Spook Country and Zero History) tied together by the character of Belgian billionaire and marketing genius Hubertus Bigend. This is undoubtedly a Gibson book, with all his strengths, but unlike his previous SFnal work it's a contemporary, post-911 book, with the protagonist, Cayce, having lost her father during the attack (emphasis on the 'lost', he's not confirmed dead). Cayce's thing is fashion and trends, something she is uncannily sensitive to and employed to advise on, and her passion is a series of odd, haunting, noirish film clips, the Footage, that are being released onto the net with no idea of where they came from, or who created them. Then Bigend hires Cayce to track down the origin of the Footage, but does he just want to monetize it, and does the Footage want to be found?

The Winter Market, William Gibson

So why am I listing a short story (technically a novelette) in a list of novels? Because if you want the works that have affected me most, then this is undoubtedly one. Published in Gibson's Burning Chrome anthology, one of the most important anthologies in SF history for what it and Bruce Sterling's contemporary collection Wired did to shape the field, this is a stunning exploration of disability, death and identity, but mostly listed because 28 years on I still can't escape being haunted by Lise's 'Sometimes I like to watch'.

At the Mountains of Mourning, Lois McMaster Bujold

Like 'The Winter Market', a list of the works that have affected me most wouldn't be complete without this short story (technically it's a novella, and published in the collection of the same name). The Miles Vorkosigan books have always had a focus on disability, Miles being disabled in a society that doesn't tolerate the Other, but in this story LMB foregrounds that even more than usual and a very young Miles takes it on himself to investigate the death of a disfigured infant, a death that exposes more of the ugly underside of Barrayaran society than Miles may have expected to find.

Memory, Lois McMaster Bujold

Having listed a Miles Vorkosigan short story, I think I have to have a novel length one, because it takes that amount of space to see the glory that is Miles, that hyperactive runt (as Cousin Ivan designates him), at full throttle. I could as easily have picked any of the later Miles novels, but Memory is where Miles is finally forced to grow up and assume his position in Barrayaran society. Originally I loved Miles for being a disabled action hero, but Memory is where he demonstrates he can be just as compelling a hero when the action takes place in the Imperial court, or in an interrogation cell.

Ash: A Secret History, Mary Gentle

Ash has apparently just been republished in the Masterworks of Fantasy series, but it's actually very well disguised SF hidden behind the tale of the exploration of the background of an alternative Joan of Arc (the eponymous Ash) and the discovery that the fantastical elements of the story may not be as fantastical or allegorical as modern researchers have believed. Mary Gentle has been one of my favourite fantasy authors for as long as I can remember, and one of the most ambitious, which may perhaps explain why she isn't as well known as many less ambitious authors.

Cryptonomicon, Neal Stephenson

Cryptonomicon (and it's prequel trilogy The Baroque Cycle create a secret history of connections amongst the lesser known movers and shakers of the world, in Cryptonomicon's case deeply linked into Enigma, Bletchley Park, and Nazi gold. And that's only half the book, because the intertwined rest revolves around their grandchildren, trying to create an artificial currency and offshore data haven, and what happens when they run into the story of that Nazi gold. Neal Stephenson's books manage the weird combination of being both incredibly dense, and dragging you in with often breakneck pacing. 

Look to Windward and The Use of Weapons, Iain M Banks

Iain Banks was guest of honour at LonCon3 a couple of weeks ago, even though he died last year, and he's been one of the strongest voices in British SF (and mainstream) since I first read him in my early 20s. It's difficult to pick one Banks book, I could as easily have picked, say, The Business from his mainstream works, that's another favourite, but the Culture was at the core of his work, so one late Culture novel, Look to Windward, which I think is Banks at the peak of his work, and one early, The Use of Weapons, for Banks at his early, stylistic, best, and for the image of that chair, which has stayed with me for 25 years.

Locked In and Unlocked, John Scalzi

Putting a novel that only released a couple of days ago in the list may seem excessive, but I've been waiting for Locked In with bated breath since reading the companion novella Unlocked a couple of months ago. It's an SF novel about disability, with a disabled protagonist, and it gets it right; that's so rare. But even if you don't recognise the sharp observation, it's a damned good murder mystery with a logic to the crime that's deeply embedded within the milieu in which it occurs. I'll be astounded if this isn't short-listed for next year's Hugo. Unlocked, by contrast with the novel, sheds the tight focus on the crime in favour of a wide and deep investigation of the post-Haden's Syndrome World, that lets it look even more closely at the disability parallels, and it gets them even more right than in the novel (and it's free). 

I make that 12 novels, 2 novellas and a novelette - close enough.

Worldcon on Wheels

(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.

Accessing Worldcon

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....

Wheelie (Mis)Adventures

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.

Wheeling Free

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.

Wheelchair Stalking

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 servant's 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.

So is this the end? Well, maybe for this blog piece, but hopefully not for me in fandom and convention going - it turns out I just need a set of wheels, and arranging to get them is something LonCon3 has kicked into high gear.

Accessing the Future from the Graveyard Shift

Accessing the Future is an SF anthology looking at issues around disability and intersectionality that's currently in its crowdfunding stage. Spinning out of this they've launched a blog hop - I had to look it up, seems roughly equivalent to what we do for Blogging Against Disablism day each year: set up a common theme for blogging and have an index page that links to them all. And for Accessing the Future's blog hop that's here.

The theme here is exploring disablism and body privilege in fictional worlds through five questions for writers and/or readers:

1. Tell us about your Work In Progress (WIP) / Current Read (CR) and the world it’s set in.
2. Who are the most powerful people in this world?
3. Where does their power come from?
4. What physical characteristics underpin their positions of power?
5. How does this affect the weakest people in the world?

Seeing as I finished the first draft of my novel Graveyard Shift literally five hours ago, I'm going to go with that, though it's actually an urban fantasy rather than SF.

1. Tell us about your Work In Progress (WIP) / Current Read (CR) and the world it’s set in.

The eponymous Graveyard Shift is Seattle's 13th Street Precinct, in a world that isn't quite our own, where myth is true, belief has consequences, and where St. Wilberforce barnstormed equal rights for all through the UK's Parliament 200 years ago and shamed the rest of the world into following suit. 200 years on and werewolves and vampires aren't just real, they're living next door and registered to vote.

Of course equal rights and no discrimination are totally different things, and 13th Street is Seattle's non-human ghetto, and the 13th Street Precinct is SPD's ghetto for cops who are no longer entirely human. But a fantasy world doesn't mean that there aren't real world concerns. The Russian mob are causing issues, there's a sudden influx of hellbane on the street, and three SPD officers are about to trigger a nightmare.

2 Who are the most powerful people in this world?

In the world is a difficult one, when the focus is Seattle at its widest, and mostly 13th Street, but the protagonists for the novel are my three SPD officers.

There's Aleks, daughter of a spy, only Papa was KGB, not CIA. Russian immigrant, fanatically fit, inclined to be short-tempered, and since an incident 8 years ago, also inclined to turn furry once a month. And host to Suka, an even more short-tempered Alpha wolf, who watches the world from the cave of Aleks' mind.

There's Bobby, a political operator and ladies man, who once betrayed a much younger, more vulnerable Aleks by two-timing her, currently breaking in a new set of fangs after a run-in with vampire gang the Bloods. And who has just been banished by a grateful department to the Graveyard Shift, where his new partner is the woman he once betrayed.

And then there's Laura: Witch, Mother, CSI. Aleks' BFF, who walked into that same incident with Aleks 8 years ago, and came out of it not furry, but with a flashy set of wheels.

Other movers and shakers? Quinn, the enigmatically scary cop who runs 13th Street; Father Paddy, the 13th Street Chaplain; Yuri Vlasenko, negotiator for the Russian mob; Bennett Gorman, FBI Special Agent in Charge for the Seattle Field Office, a man with one target, and no time for anything else; Cathal O'Shea, Daoine Sidhe elf and head of SPD's Office of Professional Accountability, La Belle Dame Sans Merci come again, much to Aleks' annoyance; there's Baron, necromancer and drug lord, a man with a hidden grudge; and a whole rogues' gallery of Voudoun Lwa.

3 Where does their power come from?

Oh, interesting question. Is power inborn, acquired or gifted? For Aleks her skills come from her background, but her power comes from the wolf. For Bobby, power is something he has yet to grow into. For Laura, power comes from being a seventh generation witch, but her power is honed through her academic degrees and her position as a Board Certified Forensic Sorceror. For others, Yuri, Bennett Gorman, Baron, power isn't simply acquired, it's actively taken.

And in this world power, supernatural power, comes from belief. So religions wield power, but belief can shift and change them, for good, or for ill.

4 What physical characteristics underpin their positions of power?

Aleks is a fitness freak, a runner, a biathlete, the equal of anyone physically, but well aware her people skills are occasionally lacking. Bobby is a man who built himself on looks and style, but now finds himself wondering if that was style without substance. And Laura is the contradiction, mother, wheelchair user, paraplegic, and the most dangerous one of them all.

5 How does this affect the weakest people in the world?

The oddity of Graveyard Shift is that the strongest are also in many ways the weakest. Aleks and Bobby are both victims of anti-paranatural prejudice, with Aleks in particular scarred by that, while Laura isn't just a witch, she's a wheelchair-using witch trying to hold a command position in a male-oriented, physical ability-oriented organisation. But the weakest of all, at least on the surface, is Laura's daughter Megan, three years old, cute as a button, and target for vengeance. Of course she is her mother's daughter, and Aleks' goddaughter, so god help anyone who endangers her, on either side of the law.

And if all this sounds like it might be allegory for the issues disabled people face in the real world, damn straight it is!

(It's suggested that contributors to the blog hop also nominate three people to add further contributions, that's not necessarily easy for those of us on the neurodiverse side of the fence, so I'm going to pass on that element).

DRUKing the Issue. DR-UK, Inclusion, Demonisation and Barriers

A new piece from Disability Rights UK outlines the position they took when speaking from the floor during the Fabian Womens Network event on disability and barriers.

 Frankly I'm stunned by this piece. It declares that DR-UK doesn't want to talk about inclusion or demonisation, because those are passive and don't show our (Thatcherite) contribution to society. Surely just a moment of analysis would have shown that a major element in the discounting of our contribution to society is the overwhelming demonisation as lazy scroungers that we face in the press? It is quite literally impossible to demonstrate 'our contribution to society' without simultaneously challenging that demonisation. Turning to inclusion, 'our contribution to society' is surely dependent on our actually being able to be part of that society! Unless we fight the battle for inclusion, and the fact is that we are fighting the battle for those whose need for inclusion is absolute, because they cannot survive without it and the support implicit in that inclusion, then we can never claim to be an inclusive movement, because we will have sold those who need our support most down the river.

By trying to frame the debate in terms of 'our contribution to society' DR-UK are acquiescing to the demands of IDS, DWP and the Coalition en-masse that disabled people must demonstrate that they are worthy of being considered 'hard working people', or be justifiably condemned as lazy, idle, faking scroungers. It's as if DR-UK had looked at 'Nothing For Us, Without Us' and said, 'ooh, Iain won't like that, better find something he will like.'

How on earth can a disability rights organisation be resistant to talking about barriers, the one constant in our experience of disability? The author dismisses barriers by saying 'Look at the Maginot Line'. If he was more of a military historian he would realise the Maginot Line rendered the entire Franco-German border inaccessible, forcing Germany to sneak in through the Belgian back door - in other words it is actually the perfect example of the half-cocked, add-on, make-do-and-mend access provision that forces us round the back to the servants' entrance on the rare occasion there's even that much thought given to allowing us to get inside. His other example actually enshrines the existence of barriers by saying 'if something is inaccessible, let's not challenge that, lets see if we can find a way round to the servant's entrance'. Barriers are there, they're real, and they stop disabled people from achieving more than a fraction of what they otherwise could. For a disability organisation, particularly DR-UK, with its self-appointed claim to represent us all, to claim that challenging barriers is negative simply beggars belief. In fact with their stated determination to focus on 'our contribution to society' the idea of not challenging barriers is even more ludicrous, because, unless we challenge the barriers we face, that 'contribution to society' will be forever compromised.

Disturbingly the author also adopts the divisive position that as disabled people we can be divided into those of us with huge support/inclusion issues and those of us with little to no support/inclusion issues. The truth is, of course, that there is a whole spectrum of levels of exclusion faced by disabled people, spread across multiple areas of disability, access and support issues such as independent living, physical access, online access, workplace discrimination, discrimination in the street, educational provision and so on. Each of us has an individual position on that spectrum of exclusion, but the overwhelming majority of us are somewhere in the middle, facing significant exclusionary barriers in one or more aspects of our daily lives as disabled people.

Equally disturbing, and clearly dangerous, is the likening of the experience of people whose disability has perceived lower levels of exclusion to the experience of people who are temporarily ill with the flu. The author attempts to justify this analogy by pointing out the difference between long-term and short-term needs, but given an ongoing DWP strategy of obfuscating the difference between short-term illness and long term sickness/disability in order to justify benefit cuts it is breathtakingly reckless for DR-UK to adopt the same strategy of likening the two.

The author states he is driven to these positions by the danger that "disabled people" is not understood to include "the many people who live with pain, fatigue, severe confusion, depression, the most significant learning disabilities and autism and also other challenges from homelessness to alcohol or drug problems." Speaking as someone living with pain, fatigue and neurodiversity, not in my name! If people don't understand the full range of disability, then that is a problem of inclusion, and refusing to address inclusion will not fix it. Only by getting out there into the streets and into Parliament and talking about the sheer inclusive breadth of disability and the barriers we face will we manage to make any progress at all.

Ultimately this DR-UK piece reminds me forcibly of DWP's Disability Confident scheme, which purports to address workplace disablism by reframing it as employers not understanding disability and therefore never actually gets around to challenging workplace disablism. DR-UK know that we face huge barriers to participation in society, and huge cuts to the already fatally strained care/support budget through the closure of ILF and the slashing of council budgets, but rather than get their hands dirty fighting in the trenches like the rest of us, they want to reframe the problem by showing what good little crips we are. Again, not in my name!

If DR-UK want to represent us all, then surely it might be an idea to start by listening to what we want them to say - 'Nothing for us, without us', remember? and I'm fairly sure what we want them to say is anything but the policies outlined here.

Opposing the Right To Kill Us Bill

Lord Falconer's Right To Die Bill (I prefer the more accurate Right to Kill Us) was debated in the Lords on Friday, and disabled people were out in force as part of the Not Dead Yet campaign against the bill, which seemed to surprise many non-disabled people.

That our opposition to a bill undermining our right to live is a surprise to many non-disabled people is not, unfortunately, surprising to us, but it is an ample illustration of why society is not mature enough in its attitude to disability for us to sleep soundly with a Right to Kill Us law approaching the Statute Book.

Just by coincidence on Friday I also came across this BBC article: A Point of View: Happiness and disability which reflects on non-disabled society's inability to comprehend that people can be simultaneously disabled and happy (and indeed happy to be disabled, I know I'm happier and a better person for the disability experience). The article gives it a name, the Disability Paradox, though I think the Normie Paradox fits better, it is after all the normie populace holding paradoxical views in the face of our evidence. And that's what makes putting the Right to Kill Us into their hands so dangerous. Normie society thinks that being disabled is a literal fate worse than death - just think of the phrase 'I'd rather be dead than in a wheelchair' - and is so convinced of that fact they don't hear our message when we tell them otherwise, our personal experience is written off because it doesn't fit their worldview. We see a similar phenomenon at work when polls show that non-disabled society as a whole believes that the rate of disability benefit fraud is 27%, not the actual 0.7%. Normies are predisposed to believe the worst of disability, because they have been brought up to believe that disability is intolerable and somehow shameful - I made the transition to disabled as an adult, so when it comes to Normie attitudes, been there, done that, had to fight my way out the other side.

This society-wide delusion about disability makes a Right to Kill Us bill doubly dangerous. Not only are people with acquired disability pre-programmed to consider their situation intolerable, making a neutral attitude towards their disability something they have to struggle to achieve, but, worse, non-disabled people are then pre-programmed to disregard what we say about how we feel. This creates a scenario where someone becomes disabled, enters the normal grieving process primed to regard their situation as intolerable and worried they will be 'a burden', because that's what they have been told disabled people are, and because they simply haven't had time to learn all the coping techniques that make managing a disability easier in the long term than the short term. Meanwhile all the people around them don't just hold the same views, but are pre-programmed to disbelieve them if they happen to say they are happy. If an emotionally vulnerable person is surrounded by people who believe their situation is intolerable, and that they would be better off dead, then there is a clear danger that they will internalise that view. If a Right to Die bill is on the Statute Books, then that provides an easy exit from a situation they and everyone else regards as intolerable. If there is no Right to Die, then they will be forced to confront their new reality and eventually, hopefully, join the vast majority of disabled people in realising they can still be happy with their lives. 

As the impetus to take advantage of a Right to Die comes from a society-wide flaw and the pressures disabled people experience as a result, that's why I prefer to label it as a Right to Kill Us. They might be unconscious of it, but it is normie pressures that push disabled people towards euthanasia. (And unfortunately some of them are conscious of it, and happy to embrace that, one of the disabled people I follow on twitter reported being urged to kill himself by a complete stranger while I was sitting outlining this blog).

Supporters of a Right to Kill Us might argue that the Falconer Bill does not provide for the scenario I have outlined; it insists that the person invoking it be terminally ill, but similar provisions were built into the Dutch and Belgian laws, and are now regularly ignored, with Belgian even allowing euthanasia of children. Equally it is clear that we are at the top of a slippery slope, none of the flagship cases used by the pro-Right-to-Die campaign would fall within the Falconer Bill's criteria, meaning the pressure to extend its remit already exists, even before it is law. Dignity in Dying denies it advocates extending the law beyond terminal illness, yet some of its patrons have truly radical views on how far we should go, with Professor Anthony 'A.C.' Grayling advocating on their website for assisted dying in cases of "painful or undignified unrelievable illness" which is so general as to cover pretty much all disability, certainly it would have covered me during the years when I was spending several hours a day curled up in agony, yet there were times I was both curled up in agony, and howling with laughter, pain and happiness are not incompatible - and isn't 'undignified' such a revealing insight into how he views disability itself.

The tragic irony in all this is that I do support the concept of a right to die in terminal illness, I just don't believe we can safely implement it while society holds, and advocates, such a flawed, negative view of disability. And that's why I oppose giving society the Right to Kill Us.