Thursday, October 20, 2005

Permanent Internal Biscuits

I know I mention biscuits a lot. I like them.

At the beginning of my crip career, biscuits were often close by. I welcomed them with open armfuls.

Last night, I sat and consumed several (about 8.. ish) in consolation for the fact I had to go and have a scan this morning and the appointment letter forbade me any food after 10.00pm at night.

Never mind, I thought to myself, lounging on the sofa watching 'Beyond Boundaries'. At least the last food I'll have is some nice biscuits. As the crips (yes, they called themselves crips last night - aha!) trek became more and more difficult, more and more comfort biscuits on my part were deemed necessary.

So apart from a painkiller at 5.00am this morning, no food - just plain water - has passed my lips. Twice this morning, I caught myself wandering into the kitchen in search of food. I never really bother much about breakfast, but when you can't have something, somehow you feel deprived even if you don't usually want it in the first place.

Got to the hospital. Put the gown on. Had the scan. Feeling so full of water I wasn't the slightest bit hungry.

Halfway through, she turns away from the screen and says to me "Have we had something to eat this morning?" and looks me straight in the eye for the first time, trying to catch any looks of guilt. "Nope - just water" I answer truthfully, feeling a little guilty nevertheless (like you do sometimes when you see a police officer). "There's something in your stomach," she says again, looking once more in case I crack. I repeat "No, I've eaten nothing, I promise you..." She runs the scanner up and down my stomach. Blue goo slides down my sides. She frowns.

"It's biscuits" she says. "You've got biscuits in there."

"No I haven't" I reply, feeling certain and a little bit worried. Can you get biscuit-shaped tumours?

"Never mind" she says. Some people look like they have things in their stomachs - even... (and again with The Look)... if they haven't. Maybe it's all the water you just drank. Either that, or you have some permanent internal biscuits."

How comforting!

Wednesday, October 19, 2005


I've been asked to do a lecture on disability arts, mentoring disabled artists, developing partnerships, plannning processes and... um, everything, it seems, in the whole wide world of disablity arts, where we're at, where we should be going, and how - specifically - we get there.

It's not too much to ask, is it? Could that be steam coming out of my ears?

This sort of thing is fascinating, but it's not easy. At present - certainly in mainstream academia - there's no standard, widely taught course on disability art and artists, although I hope there are some somewhere, or at least in the pipeline...

My art education barely had enough background on minority groups like women artists (!), let alone disabled ones. For the past few years I've been trawling the internet, collecting magazines, reading articles where I can find them ad infinitum, in order to educate myself about disability politics and the development of disability arts in particular - who's who, what has gone before, where it's currently at, and finally, what my place in it all may be.

This post has little direction other than to be a break in all the head-spinningly academic literature crowding my gibbering brain at the current time. Some things I have to sit down and read with a dictionary (like the writings of Dr Paul A. Darke), an internationally respected academic, writer and cultural critic who has written and created extensively around the issue of identity and culture (so says his site), because an art education mucking abaat with paints doesn't really teach you many long words, well, not enough to mix it with the heavyweight thinkers on this subject anyway.

I hope to compile a links section soon so people who visit the blog can see what's out there so far. If anyone reading wants to suggest anything, by all means do so - it'll likely not be a definitive list and all contributions are greatly welcomed! There is good stuff out there, such as Allen Sutherland's Chronology Of Disability Arts 1977- March 2003 courtesy of the National Disability Arts Forum website. I'm currently ploughing through it. It's much easier to find this kind of information now that it probably was ten or twenty years ago, for which I'm extremely grateful.

It's cold outside, the rightkind of weather to make you happy to curl up indoors with a book, a dictionary and a big plate of biscuits.

And right on cue - here comes the rain.

Thursday, October 13, 2005

'Shedgirl' Fang takes another pot

Whoopee! I won again at poker last night. It was against Mr F, one of his workmates and an old friend. I started off playing woozy and rubbish on a painkiller, and really at the beginning of the game, hoped I'd be out early so's I could curl up on the sofa with the banana tea loaf I'd made earlier. Our old mate went out first (he's more into the gee-gees really), leaving three of us to scrap it out. Taunts of "Wake up short stack" got me riled and I rallied, shooing off Mr F's colleague and surprisingly (for I am still a little bit in awe of Mr F's poker skills) I good a good run of cards, and with some skill against Mr F's agressive play, that was that.

Now, I am not a really experienced player yet. Mr F got into poker about three years ago, on his weekly get together with his mates. They changed gradually from playing Dungeons and Dragons to poker. I didn't often play D & D with them, but used to help Mr F write the odd dungeon, and still hope (as do the ones who don't win as often as they'd like to at poker) that those days aren't gone completely. But the poker bug bit the majority of the group, and it's been poker ever since.

Mr F has been encouraging me to play since the spring of this year. I wanted to know what it was all about when he came home after winning and breathlessly told me how he'd pulled some fast moves to win a pot - and it all went over my head. It's his new passion and it's good that its another thing we can do together.

At the time, poker was starting to become more popular, shedding the seedy image it used to have. Here in the UK we have a full-blown poker craze going on. This is good, because you can now easily buy paraphenalia like poker chips, rather than have to use monopoly money, pennies, or matchsticks, which are not very desirable objects to accumulate. We don't often play for money - it's the social element and skill building that's the main enjoyment. The more you learn, the more layers of skill necessary to become a sophisticated player become apparent - you need to know what cards make a good hand, but also know how to bluff and take risks, know when to play conservatively, use strategy to get where you want to be and develop an individual game playing style. Some people play 'tight' and wait for good hands, some people play 'loose' and bluff or play small hands - and everything in between. You have to attune your game to your opponents, and watch them in case they give away 'tells' - behavioural signs that may point to what hand they have. For example, picking up your cards and grinning like a loon will not make you any money because your opponents may figure you have a good hand and not risk any money in the pot.

Now I join in the home games, although I don't often travel out for a game unless it's a weekend or cash game. The flipside for me is the sitting still for hours. My joints get too stiff. Now we have moved house, we have a better room to play in, and people will now mostly come to us, to my lair, where I can further hone my skills.

This is a good thing for my game, because sometimes people don't take beginners too seriously. They don't believe they have the skill to beat them and stick in their money, only to realise you did have a better hand. Oops. The boost from times like these, winning chips and knowing people have been caught off guard always gives me a little spark of pleasure. It's how I got my poker nickname, shedgirl.

I must have been playing for all of a couple of months when Mr F decided to organise a cash game. Now, we are not big spenders or gamblers in the sense we end up betting our cars, dogs, jewellery and the like. A cash game means everybody pays a tenner for the same amount of chips, and the winner takes the pot. During the first hour of the game, if you lose all your chips, you can buy back in for the same price you started with, £10. So if 5 people are playing and there's one buy-in during the game, £60 is up for grabs. Our logic is this for the occasional Saturday night cash game - where else could you have a night out for £10?

I didn't expect to win this cash game, being so green. It was the first time I'd ever played more than one person, because up until then Mr F had just coached me 'heads-up', that is to say, play between only two people. Everyone around the table knew it and had been playing longer, so I suppose my presence that night was hardly an imposing one. Plus I am female - which, surprise, surprise, in the historically male-dominated world of poker, can be seen as an, ahem, impairment.

Some poker books I've read say women don't make good poker players because they aren't aggressive enough. It's as if society has backpeddled 20 years and the talents of the female of the species are regarded as looking pretty and sniffing flowers - nasty bullying, especially not amongst boys, is abhorrent to such gentle creatures. Ha. Believe it if you like boys, but there are some pretty good women professional players these days, and there's no genetic reason why a woman can't employ brutal tactics at the table. I choose to see this old-fashioned perspective as an achillies heel in any male's game who subscribes to it. Meet a man who doesn't believe you can play aggressively and you've got something to reel in, simply making the evening more fun.

I don't think I've detected this much around any men that I've played with so far. The funny thing is, it's in a lot of the books by more misogynistic old experts, that they're all reading to improve their skills! Some of the wives and girlfriends in our group of friends are starting to play, and I can't help thinking there has been a pattern of surprise victories... and possibly a little bruised pride when someone's 'missus' gives the boys a kicking.

Back to our little game. I wobbled along, noticing some of the other's chip stacks were about the same amount as mine, trying the odd bluff and being successful, scaring myself silly in the process. I had my confidence boosted when the buy-in hour was nearly up and somebody lost all their chips and had to fork out another tenner. I may have detected a little surprise on the part of the unlucky player I wasn't first out, but then again it could be my imagination. I'd been so nervous about the game I'd spent a week swotting up from a book called "How To Play Poker - And Win" I'd tried a few tricks from the book, and was about 3rd in a game of 6 people at this point. I was happy. I'd estimated on experience alone I'd have the least chips all the way through the game and be out first.

The next had was dealt. Mr Fang is an aggressive better, and he was chip leader at this point. He uses betting to push people out of pots, scaring them away, or bets to see if anyone else has a hand before deciding whether his hand can stand up to them, or it's worth a bluff to steal the chips. (Any poker player with an ounce of savy will tell you that they never bluff). Everyone else caved out of this pot and it was me and him. Him, who'd taught me everything I knew, who had a pretty good idea how my mind worked, and who was now staring me out across the table and smugly sticking in an outrageously aggressive bet. My stomach flipped. Really, it did. I had a half decent hand. And I'd run away from several pots he'd exhibited this type of behaviour in, not wanting to loose more chips than was necessary, but also, not wanting to loose badly and be beaten by my husband. I was hemorraging chips as a result and would soon drift out of the game if I didn't stick up for myself. Dammit, I said to myself. Enough is enough. I glanced across at him and he had the cheek to start grinning from ear to ear, certain I was going to back off. "This is it," I said to myself, "Better to burn out than fade away. I'm going to go all in". I pushed all my chips into the middle of the table.

His smiled broadened (although I wasn't sure how that was physically possible). He clearly thought he was going to give me a whipping for my cheek - and put me out of the game in the process. My all-in bet meant he'd have to dedicate half of his chip stack to come with me, but I'm sure all he was thinking was that he'd soon be possessing all my chips and I'd get relegated to making tea for the rest of the evening. Right. We turned our cards over. He went a little pale. It appeared I had a hand one card higher than his. The last but one card was dealt. My hand improved further. Mr F had a few 'outs', that is, cards that would strengthen his hand to be in the lead, but they were few in number. However, it had been a daring move on my part, possibly one he hadn't thought I'd have the heart to make- my starting had was good enough to be seen with, but not all that by any means. And I'd caught the beggar playing less than the quality he claimed he always played. Everyone went quiet. Final card. It was all over. I'd won! I'd demolished half his big fat chip stack!

The shock on my poor husband's face almost made me feel some guilt, but the evidence on the table in front of me showed he'd been just as cheeky - no, more so, in fact, than me, for all the aggression he'd showed. In the little sparks of pleasure you feel after winning an important hand, I basked - I was the new chip leader. I had pulled it off. Clearly now I saw evidence in the faces around the table that I'd been underestimated - and god, did it make me feel smug.

Mr F, anxious to retain some dignity, switched back into mentor role. "You should never have bet that amount on that hand," he said, hoping to claw back some ground. "Ha!" I said "You're a fine one to talk! I thought you never bluffed?"

In an attempt to prevent my head from swelling up big enough to crush the table, our friends, and the entire room, a fag break was called. Most of them smoke, but I don't, so they left me alone to be smug whilst they all went outside. And out there, in that huddle of despondency, my poker nickname was born. Mr F's mates rallied round, offering consolation, and fearing the dawning of a new age. For the week before, in a chip game round someone else's house, the wife of the host had giving them all a good shooing off the table, eventually winning the game. This was not good news. "If your wife keeps playing like that, you'll have to lock her in the shed," someone offered.

Word has it, my husband agreed...

Back inside, every time I bet the pot, it was accompanied by rising cries of '"shedgirl, shedgirrrl!" I liked the fact my name was born out of fear, and sadly, all the attention went straight to my head. Did I go on to win victory and crush them all? No such luck, I'm afraid. I did what many a player does when their world is rocked by winning, losing or being caught bluffing - I went 'on tilt', in other words, played my level worst for the rest of my time in the game. Mr F prevailed, eventually at sometime past midnight going on to win the pot. Every game you play is a lesson learned, and that night, I may not have won the game, but I did win a name that always gives me a chuckle when it's evoked.

Months later, I won a cash game, going heads up with Mr F and holding my nerve. And last night in a chip game, I had my second game win. It's nice to experience a win, but now I know it's not the only thing you play for - it's the pleasure of the game and the company.

Mind you, if I ever find out which one of our friends suggested my husband lock me in the shed, I'll make dammned sure he gets the shooing of his sorry-assed life...!

Wednesday, October 12, 2005


An apology to Julie of Milton Keynes

Dear Julie,

You may well be wondering who I am, and be assured I wonder that myself sometimes. The transient moods that seize my being are due to the fact I am one who is at the tender mercies of fate and medicine, those roguish forces that unashamedly plague my physical body with a regularity I envy, most especially when it comes to matters of the water closet.

This may give you some clue as to why, when driving through Milton Keynes last Monday night, you happened to catch the eye of a disabled woman in the next car who appeared to be mouthing something to you. I assure you it was not an insult, just a heartfelt cry from the very depths of my being.

You might be wondering "Why me?", but then again, you might not, as you are clearly an individual who likes to attract attention, decorating your vehicle as you have with large signage, pictures and stuffed animals, along a certain theme that I am frankly, surprised would appeal to a woman old enough to own a driving licence. From the glimpse I caught of you, your sensible haircut and conservative shirt belies the frivolous display festooning your vehicle. Perhaps you expect, even crave a reaction.

Despite this, we live in a civilised society, and each individual must take responsibility for their actions, ideally behaving in a manner in which they themselves would wish to be treated. I accept fully I did not do this. But then again Julie, you must understand the incredulous reactions your particular vehicle design may prompt. You are certainly the only grown woman I have seen driving a car dedicated to Winnie-the-Pooh in such a (may I say) dreadfully tacky manner.

The dual carriageways and roundabouts of central Milton Keynes allow a certain amount of communication between drivers as they slow to take the roundabout, and it is here, after driving behind you for some time, my car drew alongside yours and I uttered those words that caused you so much puzzlement. Let me assure you they were a shock to me too, but as I have already mentioned, my desperate state and your decorated car combined to prompt this out-of-character reaction.

I have never, in all my born days, ever seen a car so dedicated to Winnie-The-Pooh. A large stuffed Pooh sliding around on your parcel shelf must surely hinder you from concentrating in the rear view mirror. I can only hope the large stickers bearing your name "Julie" covering a good third of each rear side window, and the legend "Winnie-The-Pooh" scrawled across your sun visor, do not obstruct your vision also, although perhaps an unkinder person than myself might question whether it is necessary under the auspices of natural selection for someone so obsessed to take notice of what occurs in the real world.

No, it was the sticker across the rear windscreen that prompted my outburst. I can only hope and pray you don't know how to lipread. You see, I've been rather supressed of late. Supressed, that is, in a bodily sense. The evil codeine is getting the better of me. It's the kind of thing you keep to yourself, Julie, can you understand that? In company and conversation, it is not the sort of thing one freely discusses. In the intimate world of the crip blogosphere, even, people don't usually allude to this sort of difficulty. Pain, maybe. Access, maybe. Everyday events, usually. But not behind the bathroom door.

So. When I saw that sticker, large as life, across your rear windscreen, saying "I love Pooh", my emotions got the better of me. I am ashamed Julie, but there you go. I was not swearing at you, nor berating you for your style of car decoration (unusual though I think it is) - what I was actually saying Julie, to you, being a stranger (and isn't it sometimes easier to discuss difficult issues with strangers?), was "Huh! I'D LOVE A POO!!!"

Because Julie, that is the bottom of the matter. I would. But it was coarse and inappropriate of me to expose you to this revelation. And for that, I am sorry.


Wednesday, October 05, 2005


It's funny how when you're growing up you never wish for the simple things. When I was a kid, I thought I might want to be a nurse (until spending time in hospital at 12 and discovering there were such horrors as bedpans), then an archeologist (until I faced up to the fact I wasn't a hardy outdoors type), or an air hostess (short-lived teenage glamour fantasy that ended when I realised all of my 5ft 1ins wasn't going to get me there). I also thought about working on a kibbutz until being distracted by what turned out to be the first of many car-crashy relationships. Through it all I wanted to be an artist, but lacked the self belief to think it would ever happen - now I am one, it makes me very happy. But I never thought about the simple stuff, like where I was going to live, what it would be like, and so on - well, not beyond the usual dreams of wealth and excess we all have in some form or another, fast car/s, swimming pool, gadgets, fucking big television, and all that.

So it came as a surprise to me a little while back when filling in my Disability Living Allowance forms, that on the bit that says "What Would You Do Or Where Would You Go If.. etc etc" I was putting stuff like I'd (like to) go to... "The kitchen", "The living room", "My garden", "the local shop" and other mundane things. As I went through the last period of deterioration that led the the final diagnosis, these things became big goals in my life as the world shrank. The wheelchair that once allowed me independence couldn't be used outside much anymore - and the house we chose in the mid-nineties wasn't big enough for me to use it much indoors either. I was pretty much living in the bedroom when I was on my own. Although we had french doors fitted in the back room to allow me to go out in the garden, my hopes were dashed at the last minute when the installation people explained we couldn't have level access without a lot more work and money we hadn't anticpated. So there it was, a big step out that I'd have had to get out of the wheelchair and lift it over to get into the garden, at a time when I wasn't supposed to be putting my upper body under any strain.

As an aside, the fact is my joints do still work, albeit with damage from dislocations and arthritic-type pain, which means in more reckless moments I may attempt things I really shouldn't be doing, i.e. it's not completely physically impossible - it's just the price I may pay for taking the risk. Its something thats easy to forget when the sun's shining, it's a beautiful day, and you weigh up the price of struggling to go and sit in the garden with the price of actually being there... and the sun goes to your head.

Moving to this bungalow has been such a long, drawn out process that I've hardly dared talk about it at any great length on this blog, or in fact, to anyone but closest family in any detail. As anyone who's ever moved house will know, there's so many things that can go wrong. Financially, when we first got the particulars (for here) it was way, way out of our price range. I never quite got round to throwing the details away, however, and the agent continued to take us round other properties within our price bracket. On one particularly despairing day, we saw a bunglow that looked quite nice from the outside - but on the inside, had no central heating, no proper kitchen... and in the living room, a tall green plant bursting its way out from out the skirting board to the window above! The place was damp, so much so that if you sprinkled some mustard and cress seeds on the carpet, they've have probably come up.

Viewings were exhausting work and there were a lot of them. I was going round on crutches to places that didn't have wheelchair access which usually meant a day in bed afterwards. The council were talking about placing ASBO's or 'Acceptable Behaviour Contracts' on our neighbours. On the day we saw this wretched plant, I was ready to burst into tears, as it was becoming clearer and clearer we would never find anywhere to live that could be made accessible but was also reasonably nice. The only other affordable property we'd seen was on a big estate where the owner had admitted the children's playground immediately behind the flimsy garden fence was used by kids in the day and teenagers/dealers and the like at night.

"Its not always noisy and they don't chuck stuff over very often" she said...

After our neighbour-from-hell experiences we knew it wasn't worth our sanity to take the chance, no matter how desperate the situation got. Mr Fang summed it up nicely when he said "I can't wait for us to get out of here and go back to being the nice normal people we really are instead of turning into potential axe-wielding maniacs every time next door kicks off."

We'd gone away on a working break only to come back to find the answermachine and email filled up with calls from the agent telling us this nice property previously out of our price range had been reduced - by 20 grand! Deep breaths all round.

We went to see it, and it was, as the pictures suggested, very lovely. It was (is) in a small cu-de-sac of all bungalows, so no through traffic (our old house was on a rat-run). It had a driveway and a long straight entrance to the front door that was perfect for a ramp. The UPVC door was wider than average - these properties had been built for older people, so disability adaptability was reflected in some features, like doors. The living room had a sliding door and wide access with no door at all to the kitchen. The bathroom was tiny, but that's not always a bad thing when you need to hang on to stuff. It was good enough. The bedroom was the right way round to allow me wheelchair access from the bed to the rest of the house - bingo! Stuff dreams of the palace, the swimming pool, and all that - this was enough for us. Our neighbour sharing the party wall? One elderly gentleman. I'd never had the feeling you're supposed to get with the old house, the feeling like you're finding 'the one'. This time there was no mistaking it. Mr F and I exchanged a glance as the agent said;

"There's a couple coming up from Somerset tomorrow and they're probably going to buy it unless you make an offer... what do you think?"

Here we had a little problem. It was reduced, sure, and we were nearly there. But not quite. Parents had made vague noises about helping out... but they were on a SKI-ing (SKI-ing meaning Spending the Kid's Inheritance) cruise. Arrgh. What to do? We took a chance. We barted for what we could afford. The agent said the amount we were offering would only insult and antagonise the owner, who had already dropped his price so far down - and he wouldn't even make the phone call. Arrgh. What to do?

With no way of getting hold of the parents, we chanced it and made an offer that was accepted. What was the worst that could happen? Our situation would remain the same - nowhere to go. The agent informed us the couple from Somerset had cancelled their viewing. All we had to do now was beg our seniors for the readies. Arrgh. Two agonising weeks of waiting for them to come home, only to find us saying, "Um, glad you had a nice time, and were you serious when you said you wanted to help....?"

To cut a long story short, they did. And that was only the beginning of of the tale about how we escaped our horrible neighbours and inaccessible house, and come to live here. But I can't write anymore today. Amongst all the ensuing sagas (and there were many), the roof in this room needs replacing - and although we've been having good weather for the time of year, its rather nippy in here. Not to mention my good office chair is still in the garage and I'm sitting at a high desk on a chair too big for me (still being 5ft 1). And then I'm supposed to be resting today, because as well as all the moving stuff I wanted to talk about, I am becoming a bit of a poker fiend, beating Mr F and 2 of his colleagues in a cash game over the weekend. There's another game tonight (not for cash, only glory) and I'm planning to play in it. It might have been my first public victory, but its an important one to defend. Not only can I move about my home as I wish, but it's game on, people, and there's many a tale to tell from these recent poker adventures as well.

Until then, I am most grateful to be able to cross off a few of my aforementioned ambitions such as being able to visit the kitchen and the living room on my own, forever in debt to our wonderful parents who helped us out in our hour of need, and also greatly flattered that people have been watching and reading and waiting for me to come back. God, this might sound corny, but I'm feeling one very, very godammed lucky crip at the moment.

Monday, October 03, 2005

Down To Hell And Up To Heaven

Well hello, and I'm back!

We have moved, it was... interesting, and finally today I'm back online. Yee-ha.

Nice neighbours, nice bungalow - and fish!

Yes, I am now a responsible fish owner. The poor things were abandoned with a little note saying "the fishpond pump burned out last year..." How heartbreaking is that? So Mr F and I are learning the delicate art of fish herding, seeing as half their home is stagnant water and needs a lot of weed pulling to make it into a habitable state. They are beginning to flock (gather, crowd, um, cluster?) near the edge when we feed them - for the first few days I think they thought we were birds coming to eat them.

Phew. Boxes are still strewn everywhere. The room I am in needs a new roof. But it's quiet! Quiet! (Except for MTV2 - we buckled and got Sky+...)

And the title of this post? It's what our solicitor says our ownership of the plot entails. Hell seems a lot further away these days.

More later detail later this week - got a lot of blog entries, gossip, etc to catch up on.