Wednesday, March 30, 2005

Crip Gold

I have struck it! At the risk of being smug too soon, I think I have wangled myself a top notch hotel room for the price of a standard double.

I was looking for a place to stay in Brighton. This might make me sound like I go places often, but I don't. The Premier Travel Inn a few posts back was a surprise bonus trip, whilst this Thursday night has been planned since last October. Brighton is full of little streets and little 3 storey hotels - and every time I found one, the photo on it's web page effectively said "no crips" as there was always a steep flight of stairs. (They could have had a back entrance of course, but sod the back entrance, I'm on an arty schmoozing trip and I don't do back entrances). Too many mops have already crossed my path in this lifetime.

So, in despair, I started looking at the really big hotels. Got one with a car park attached. Good start. Rang up, had a little chat about access. This is the time to judge whether you are really welcome, or will terrify the staff, who have likely never seen human / wheel combinations before (or will at least act like it). Staff were nice. Asked for suite with handrails and wheelchair access. There was a pause before she explained they only have one suite with access... the mini suite. Didn't sound bad, so I booked it at the standard double price - she did explain it was a little more usually but for disabled people who couldn't choose the standard room they would put me and Mr F (who's had a two day week this week, v. smug) in the mini suite.

To my surprise and glee when the booking confirmation came through today, it explained our suite - the top suite - had 'rooms' a jaccuzzi, sea views and a four poster bed...! Yay! Praise be to hoteliers who only adapt expensive suites! What's the reasoning behind that then? Old rich people are more likely to use handrails? Who cares!

Yippeee! Am off to live it up in Brighton! Crack open the champers!

Thursday, March 24, 2005

The endlessly facinating averageness of the regular human condition

I went for a random browse earlier. Somebody somewhere said a little while ago (was it you?) that the blogosphere is a great place for weeding out writers who would in earlier times send their rantings through to book publishers, but now some of these people have an easier stage, they are writing blogs instead.

Don't expect a Fangworld book anytime soon.

My trawl today spawned a great deal of;

"YeaH buT nO buT me an mi maTeZ r sO cOoL rIghT an eVeRy1 eLse is MinGinG rIght bUt yeah buT No buTT..." liberally peppered with pink bug-eyed kittens, anatomically challenged 'fairies' and stunted little bears holding hearts saying "I need love" (subtext, everyone else has run a mile).... I suppose it's better out than in, but half these people don't appear to put up a navbar, so escaping to the next blog - which often appears to be someone selling bulk cat litter or wonder drugs - is just harder to do. I found out today you can buy moist tissues to wipe long-haired cat's arses just by clicking 'next blog'. Predictable things in surreal order. Or surreal things in predictable order? I'm assuming mostly human beings write blogs.

When I was 14, I had a CB radio (I admit this for your gloating pleasure). My mum's best friend's son sold it to me, and somehow that made it respectable in the eyes of my parents, who would never have allowed me to procure such a thing had it not been for her involvement. The 1980's equivalent of a teenage angst blog was sitting in your bedroom with the mike keyed, broadcasting some mournful song you wanted the fit CB-er you eyeballed, and snogged, and who has never called you back on channey 19, to listen to. (I found all my most car-crash-y relationships over the CB radio.)

The human condition is unravelling out over the internet in all its myriad forms, and somehow I wonder if I should feel pleased to see some of the banel, darker, weirder or just plainer sides of people - quite reassuring for my own varied states of being, but mostly, strangly, kind of boring. Maybe because if you've been there, whatever the blogger is peddling is so familiar you don't need to stick with it - sometimes the strapline or profile gives you all you need to know, and you click next blog, sometimes before the other has quite finished downloading.

And maybe we're so exposed to it all now that these things don't have the voyeuristic qualities they might have once had?

It's an unhappy teenager - who hasn't been there? It's a gadget geek - you've bought them all. It's some 'kooky' bint - kooky is depressingly common. It's some average geezer (and maybe some phonecam pics of the average geezer's bum...) - like the cheeky average geezers who show their bums at the slightest opportunity and you've known all your life in real time. It's a goth doing the goth thing. Uniform black page - and if they're hardcore, so is the navbar. Sub-culture no-limits competition. Mmm, might stop for a minute or two - but only to reassure in myself in my heyday I was goth-er. No limits competition after all.

Next click, it's some disabled person. Do people stop and read cos they're not disabled? Do disabled people stop and read because they are? What's the difference between writing a blog about your life that happens to mention you are disabled, and focussing your blog on the facets of your life that disability touches?

When I set out to write Fangworld I wanted to mention disability, but not in the 'poor me' genre. I don't know if I'm succeeding yet, because I'm too close up to it, and yes, from time to time you do go through stuff that isn't nice - although so does everybody in some way. But there are facets of your life as a disabled person that are outside of the stereotypical way that (you think) people might see you. Sometimes it's funny to be disabled. Sometimes you get into dreadful scrapes, but actually in the grand scheme of things it doesn't matter. Sometimes I wonder if my wheelchair makes my bum look big, and I don't know anybody that would understand that or take me seriously. When I asked the wheelchair technician if the footplates would angle to enable me to wear high heeled shoes, she said "nobody's ever asked me that before..." I like to look for the access in everything, only to ensure it remains insignificant, and then I want to laugh about it, or ridicule the mountain of planning that pre-empts any spontaneous activity. I thought there'd be some point in my experience where I'd be self assured, but there hasn't been thus far. This is my unpredictable - and many other disabled people's unpredictable too, maybe? And so maybe simply another average afer all.

And I don't see the disabled ME in the world (yet) the way I see the teenage me, or the thirty-something me, or the career me, or the me having a relationship with someone else me. Disabled people aren't visible enough everywhere in society. Everywhere. Maybe this is the reason I justify writing this blog to my totally predictable, endlessly average urge to be on here just because I, like everyone else, can write a blog, and this is me.


Tuesday, March 22, 2005


This is my life expectancy. Allegedly. Do yours here Life Expectancy Calculator

My Grandpa was 96 on Friday, and a grand old Lancashire gentleman he is too. He's bearing up well. I'm the one in the wheelchair, whilst he flits about on a zimmer frame he only started using a few months ago.

I'm in a weird situation at the moment, being told how physically crap things are, yet seeing my career take off and be requested to 'do' things, talks and stuff. I went to a school on Friday to talk to 80 15 year olds (!!!) about being an artist. Of course, I was scared beforehand, but was encouraged to see a few gothic types and a few pink-headed pierced people lurking about. No dress code at this school. Lots of skater types too, but thankfully no goddamn casuals, who were the sorts I used to have wars with back in the day. It was all v-neck jumpers and gold jewellery, wet look perms and shell suits then. Shell suits are really flammable, y'know.

Not many chavs present in the audience. But do chavs go to school? My neighbour's son is a chav, and he was excluded at 14, so maybe that explains their absence - the audience were all 15. Yep, I hate chavs and I'm proud of it. Actually there's not much difference between these two sub-cultures, chavs and casuals, maybe the chavs-of-today are the spawn of the casuals-of-yesterday... hmmm, makes sense, doesn't it? They wear baseball caps today 'cos when they were little, Mum and Dad made them have wet-look perms, and the shame of it means they want to forget forever what the tops of their heads look like. Yes. That must be it.

D'y think I could be more than an artist? Maybe a little sideline in social commentary would boost the income. Before somebody blingin' shot me, that is...

Anyway, an absence of chav-types at the school made me feel more relaxed and it went very well. My theory is alternative types are more accepting of difference - never had any disablist abuse from alternatives, but have copped it from chavs on occasion. The kids even laughed at my jokes. I had been warned not to do any by a teacher friend, for fear of appearing uncool, but with this recent success I wonder if I have an alternative career choice in stand-up comedy too (one of my hobbies, me and Mr F go off to Jongleurs in Camden Lock every now and then), as well as social commentary, maybe sort of with a disablist twist?

I was wondering how to hang all this together, as this post was just a flying visit until later on in the week, but now I realise that as I am destined to live to 91, I could feasibly attempt all three careers - artist, bigoted social commentator and comedienne. I have the time. Ha!

Tuesday, March 08, 2005

Real life disability jackasses?!

Remember I said there needs to be someone doing the disability version of jackass? Check out this site.

Wheelchair Junkie

You need to find the idiot zone - it's part of the larger site. Cool photos. Mark E Smith, the author, is a man after my own heart. You won't find any worthy cr@p on this site either.

And talk about creative equipment manipulating... can't wait to get ma new powerchair!

Friday, March 04, 2005

Self he-he-he Heeelp

Well, I am almost a born again self helper! (except for my cynical side, which is the dark side, thus the undead that can never die... ) But other than that, I'm dealing.



Hunter shooting himself the other week sent me into a fit of grieving on top of it all, and some of the specualtion among his friends was that pain had been a factor. It didn't help at the time. But anyway. Apparently it was all planned, and I'm in two minds to decide whether that was a tragedy, or just to admire the way he chose to check out. He was an exceptional freak. As I said in another post before the news broke, self-extinction has crossed my mind too. Don't take this too seriously - remember I'm prone to gothic indulgements - thinking about death is often a recreational habit. But to choose to go rather than wait for death to take you unawares does have its appeal. You can say goodbye to stuff. Get your affairs in order (my paperwork is so messed up it looks like I'm here for a good while yet...). And... other things. I dunno now I come to think about it, maybe if I do ever get there I'll do a list for ya.

But don't hold your breath, cos... me and my TeNS machine are new best friends. Earlier on last week we went on a short break together which worked out very well. I spent some time reading the manual in a little premier travel inn in freezing Sussex. I read a manual when I borrowed one, and I just assumed that having read that, there was nothing more to learn in the new one. Not so. Another trawl brought up a gem, like how to break muscle spasms by turning the pulse rate up high enough to give you even stronger muscle spasms...! The theory is you can break your muscles out of a spasm by out-spasm-ing them even more. Classy or what? Revenge on the unruly body. After some experiments I managed to invent a new party piece, which I shall call "spazzzing frog". I can see "spazzzing frog" is going to have many applications in my capacity as a disabled secret agent as well as many entertaining hours at parties. (Note it has 3 ZZZ). Talk about grotesquely fascinating. In addition, the sensations that zap your fingers if you try to pull off one of the electrodes whilst it's still switched on. I've never had such bizarre happenings occur without chemical influence! And, AND it's helping with the pain too. How splendid! Of course, don't try "spazzzing frog" at home unless you are a disability jackass in training, in which case you'll love it.

(To go off the point a little, I really think some crip should do a disability jackass show. We have so many gadgets to attempt hazardous, non- purpose meant stunts on... a huge potential is being wasted. I'd have done it, but now I have my diagnosis - officially fragile - I guess I'd just have to take the role of director and let someone else take the glory. But I'm cool with that).

Anyway, pain, or less pain, as I originally set out to describe. I have a morning routine now. I bought the book by a Professor and expert in my condition, and so will have many new coping insights to share with you all over the next few weeks. Ha. Anyway. Routine. It goes something like this:

Conciousness occurs, remember what planet am on.

Forget about nightmare where I move into neighbours from hell house next door whilst they are on holiday and have to sleep on their dogs bed (yes, really)...

Arrange pillows into small regal pile, sit up, come round a bit more, earphones on, listen to soothing music on ipod. (Yup, I'm a gadget poser, but this is a gadget Very Worth Having if you need to relax)

Take some big painkillers before really awake, set alarm clock for 30 mins and Do Not Move to allow floaty effects to start and preven pain from rearing its ugly head.

Drink lots and lots of water in the meantime - not only does dehydration from painkillers make you feel hungover without any alcohol to start with, but c o n s t i p a t i o n is not your friend.

30 mins later, get up, float/wheel/hobble to bathroom, attend to ablutions. Really wake up when stick electric toothbrush (access aid - saves moving wrist about too much) up my nose. It has happened more than once - apparently poor realisation of exactly where your joints are when you move contributes to toothbrush-up-the-nose syndrome and is Another Thing I can blame on my condition.

Decide whether have energy to have bath... shower... or not...

Go back to bedroom, get new friend TeNS machine out and apply electrodes. Do Spazzing frog. Garrrgh. Properly awake now. Swear a bit when genuinely forget not to remove/replace electrodes when current is running.

Decide what to do with self. Food. I'm on Special K get back into your genes (?! ha.) diet, vain hopes, also I don't have to worry about handling heavy pans or making real food.

- About half morning has gone by as ablutions take ages due to inaccessible bathroom, low energy and and morning stiff joints -

Have little rest.

Float to computer. Check e-mail. Potter.

Do interesting things for rest of day at own pace... stuff. Art stuff. Invoices! Money! (Sometimes)

Count four-hour intervals throughout day and keep body topped up with painkillers. Remember (or forget at own risk) to have some laxative - didn't really need to know that did ya, sorry. The codeine resistance is rising, but I'm not too worried as it means I'm more awake, plus I'm one of those awkward buggers that doesn't get addicted to stuff. If I want to stop, I stop - and nothing really dreadful happens, except I have to do less and watch more daytime telly. Which is a big concern, as there's sod all on, not to mention they're not gonna get rid of the licence fee for a good while yet.

Plan/daydream for future when not in this awful inaccessible house.

Spend time with Mr F, who is an excellent cook, even after a hard days work and actually likes it! My mum, gawd bless her, worked full time so I'm less of a good cook and more of a good food unwrapper and heater - not a bad skill in these progressive times though.

Nag each other about weekend decorating. ***News flash in the late editing stages - we're not going to decorate, we're just going to moooovee! Yippee!***

Get a few more zips whilst trying to re-position electrodes or take off at night.

Go to bed, etc, etc.


Conciousness occurs, remember what planet...

Is it working? Nearly. Almost. Pain management and treatment by a specialist physio is on the cards. I'm talking to people about possible new projects somewhere in the distance, and hoping incapacity benefit need not claim me forever yet. Thinking about buying a gym ball. It's bound to have creative possibilities other than the assigned purpose, and I feel a lack of something bouncy in my life, never having had a space hopper when I was little.

So will she bounce or will she break? Only time will tell...