Blogging Against Disablism Day will be on 1st May, 2010

Once again, the esteemed Diary Of A Goldfish is hosting the blogosphere's annual Blogging Against Disablism event. As usual, this is not a carnival of previously posted material or a "best of" selection - it's a co-ordinated effort of many people all posting fresh material on the theme of disablism.

Full information is available at the Blogging Against Disablism Day signup page along with links to archives from previous years.

Remember, you don't have to be disabled to join in. Disability is not an isolated experience and it's not something that anyone is immune from. I know I link to this every year, but I'm going to do it again - Lady Bracknell's One in Seven post spells out just how relevant, and how unacceptable, disability discrimination is to all of us.

You don't need to write an essay. You don't need to write at all. You can post video, audio, artwork, any format you like. This is about making our voices heard.

You also don't need to be filled with righteous anger or have your protesting hat on. There's room in BADD for everything and that includes some nice positive examples of the change that is slowly but surely happening. And you don't need to worry about getting all the words right - as usual, we have a Language Amnesty to account for cultural differences and to allow those who aren't politically involved to post without fear of being attacked for failing to use the most 'current' terminology.

Hope to see you there!

Indescribable

In my last post, I talked about the Twitter event Such Tweet Sorrow, a production of Romeo and Juliet being played out in real time over five weeks.

We're one week in and it's still a really tricky concept to describe. The biggest problem is that first, you have to describe Twitter itself which is still really hard to do for anyone who isn't already using it. Trying to describe the Such Tweet project itself, on top of that, before you can even begin to talk about how much you're enjoying it, what you think about it, how it makes you feel... it's nigh on impossible.

I'll give it a go anyway. I think Such Tweet Sorrow is most like an immersive fantasy game along the lines of Dungeons and Dragons or perhaps Knightmare. A bunch of people improvising within their given character descriptions interact with you; you are supposed to pretend that they really are those characters. Except that it doesn't require special equipment, like-minded friends, pens and paper, or time set aside to play, and it continues 24/7. As a Twitter user, it slots almost unnoticeably into the life which I am already living.

That's the bit that makes it a little disturbing. Due to the circumstances of my life - I am disabled, I work alone from home, I cannot drive and am waiting on a decent wheelchair - most of my interaction does happen online, and as such I do have several good friends (not to mention clients and suppliers) who I have never physically met.

There are also dozens, if not hundreds, of people who I consider to be part of my wider social circle. We're not friends in the sense of having heart-to-heart private conversations about our innermost feelings, but there's some shared interests, some common acquaintances, and we've had a couple of brief direct exchanges - we're friendly even though we're not bosom buddies. This is the area that the Such Tweet cast fall into. The stream of posts about whatever happens to be on their characters' minds - the progress of a football game, a trip to the pub, a crap day at school - is melding seamlessly into all the other incoming tweets about Dr Who, Mad Cap'n Tom's bid for Parliament, current affairs, Naidex 2010, and biscuit preferences. Every so often, I reply to an incoming tweet. Every so often, someone replies to one of my tweets. It's incredibly normal social networking and an outsider with no knowledge of Shakespeare or the Such Tweet project would probably not be able to pick out the fictional characters.

With it all being mixed in, the line between characters and real people gets blurred. I am reacting to the characters' tweets in the same way I would react to those of real people. The most striking example of this for me so far was yesterday, when @laurencefriar sent out a tweet about meeting some "courageous" disabled football supporters. Anyone who knows the Ouchers knows that the best way to get our hackles rising is to start throwing around words like "courage" "brave" and "inspiration" and I simply couldn't help the way it made me feel (ie: angry). I had to seriously remind myself that @laurencefriar is a made-up character who is supposed to be the sort of person who comes out with tripe like that. Then I thought, well, I'm supposed to respond, an emotional response to well-performed characters is entirely permissible and means the actors are doing their job right.

But it's made me start to worry about what's coming. The writers have admitted that they're not observing a religious adherence to Shakespeare's storyline, but it's safe to say that the basics remain in place - which means it's not long to go before there are a couple of violent deaths in my social circle.

If I find myself getting angry about "courageous" then who knows how I'll react to that?

Such Tweet Sorrow

And now for something completely different.

There is a bit of an art project happening on Twitter for the next few weeks. Under the title Such Tweet Sorrow, the tale of Romeo and Juliet will be played out, in real-time, in the social media environment.

No, we're not talking about a line-by-line recital of Shakespeare's work delivered no more than 140 letters at a time.

We're talking about a handful of people, each with a role that mmmmmmore or less translates over to modern times, tweeting in character about events, thoughts, feelings, as the storyline unfolds. At the moment they are setting the scene - so, for example, Juliet is tweeting about arranging a party for her sixteenth birthday in a couple of weeks, and Friar Laurence is blethering on about community outreach projects for disaffected youth, and Mercutio and his friends came fourth in the pub quiz. There's also a certain amount of incorporation of other social media, such as Juliet putting a guided tour of her bedroom on YouTube.

I'm quite fascinated by it.

One of the characters has already begun engaging with the audience - Mercutio tweeted that he'd woken up with a hangover and got in a discussion with a 'real' twitter user about hangover cures. From reading the tweets of one of the writers, it looks like the characters don't have to do this, but he's hoping they will. So am I, although I think it'll be a fine line to walk as they gain popularity... especially what with the whole "you cannot control twitter" can of worms. There's a space on the site for the #suchtweet hashtag and I'm not sure that's ever ended well.

The really confusing bit is that if the characters were real people, I'd have stopped following them already. Juliet is a naive and irritating 15-year-old over-privileged princess whose exclamation-mark use alone would have had me hitting the unfollow within an hour... but that's exactly who the character is supposed to be. Tybalt is the sort of sulky brat I'd prefer to avoid meeting, and while Mercutio would be great fun at a party I wouldn't give him my phone number. It's bizarre to keep reading all their tweets and reacting with "oh, FFS," and then remember that this is who they are supposed to be and it's integral to the story that they are vapid/sulky/whatever.

I'll be interesting to see how it develops over the weeks, both in terms of the characters and in terms of the audience. Usually you only care about what's going on in Verona for a couple of hours and it's constantly fast-forwarding to the 'interesting bits', not sure what will happen with this slow-burn thing.

I'm also really hoping to find out more about the smoke and mirrors part of it as well, the planning and preparation and involvement.

Test drive

On Friday I had my test drive of the e-motion power-assisted wheels suggested by my Access to Work assessment.

The Invacare rep got the chair out for me and I sat in it for a while with the power-assist turned completely off, gently pushing backwards and forwards and just getting used to where everything was. The weight saved on the chair was added to by the wheels so it didn't feel too different to my existing manual chair (this is a good thing as it means if the power dies I will still be able to get myself out of the way). Then we turned the wheels on to the low setting.

Wow.

No exaggeration, I was propelling it with my fingertips.

It was a bit disconcerting... kind of like a combination of walking on stilts, and trying to stand on a balance board, you know what you should be doing but it's difficult to suppress your 'normal' reactions. In a standard manual chair, if one wheel is going a bit too fast you either tug on that rim a bit to slow it down, or you push the opposite one a bit harder to catch up. But the wheels exaggerate the force applied... I didn't come off the pavement or into anyone's garden, but it was a near thing for the first minute or so.

A couple of hundred metres later we reached the end of the block and the first uphill slope. Two metres in and I could feel some resistance (although bear in mind that with a non-powered chair I wouldn't have even got this far). So I clicked it to the higher setting, and effortlessly glided up to the road.

Now the learning really started. The kerbs around here, even the dropped ones, are a bit too vicious to just roll up. So I had to learn how to tip the chair. The way you tip a chair is by gripping the wheels and shifting your bodyweight... this allows the small front castors to get onto the pavement, and then you can tip down again and give the wheels a good shove to get properly onto the kerb. Obviously when the wheels are powered it's easier to do the shove to get the big wheels onto the pavement, but it's that bit trickier to do the tipping. Happily the wheels are paired with anti-tippers, sort of stabilisers that stick out the back so that although you can tip back a bit, you're less likely to go right over. More on that later.

That dealt with, we were on to the main slope. This part of the hill is quite steep. If the wheels were going to fail anywhere, it was going to be here, and while I hoped it would work, I was entirely prepared for getting halfway up and needing a rescue.

Nope. Straight to the top, and talking the whole way, too. We had a bit of a rest at the top - the rep needed to get his breath back after walking up the hill, and I needed to tweet about having got off the estate! I was a little bit sore, obviously, but rather than it being a muscular pain from over-exertion when pushing, it was more just the unaccustomed repetitive shoulder movement as I moved my arms back and forth to touch the wheels.

Downhill was obviously much easier. Again, the intelligent wheels made a big difference - rather than rubbing my hands and clicking my wrists trying to pull back against an uncontrolled freewheel, I just had to keep light contact which prompted the wheels to apply resistance to stop themselves getting too much speed. The tipping for the kerbs was easier second time around, and before I knew it we were back home, where we pulled up the spec sheet and started talking options.

As far as the chair goes: the basic bare-minimum cost of the chair is £1,129, and the added bits and bobs that are contractually compulsory add-ons for it to accommodate the e-motion wheels (superior axle fittings and suchlike) bring it up to £1,528. This pretty much matches my AtW grant for the chair which is £1,526.

There are a couple of other options I want on the chair which don't come as standard. Steve and my PA both have quite small cars, so I want to get the fold-down back to make the chair more likely to fit in the boot... that's an extra £265. I will still need someone pushing when I'm having a rough time or if the batteries die... Steve is very tall, my PA is my height, so height-adjustable handles, £174. Other options that would be a bit nice but not quite as important are the bag that clips in underneath the seat at £34, a seat cushion at £45, and mud-guards which are £108 (fixed) or £193 (removable). I think I'm probably not having those.

Then there's the wheels themselves, rolling in at a cool £3,995. My grant for the wheels is... £3,995. How handy! Unfortunately, those anti-tippers mentioned above? The ones that are an absolute necessity if I want to have any chance of mounting the rubbish kerbs near my house without landing on the back of my head in the road? An extra £240. I'll pay it, obviously, and I'm not complaining by any stretch of the imagination, but it's a bit of a startling unplanned expense whilst being the sort of "option" that I wouldn't really class as "optional". I would have really expected that to have been included in the original assessment along with axle fittings and brakes.

I didn't want to let the rep take the wheels away, even though the chair they were on for the test-drive wasn't quite the right size for me and a horrible colour. I'm getting really impatient to go out, especially with the sunshine! The plan is that next week, once I've really ironed out exactly what options I'm having and made my final colour choice, the rep will visit again to take a deposit and the final order. After that, it should be about two or three weeks before I can take delivery.

I am very, very, very excited.