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.

Monday, August 15, 2005

Loose screw

It's official - I have a screw loose.

It's in me leg though, not me head. An op I had a few years back has come back to haunt me.

This means elevating it and using my hands more to help me get around. So hands are complaining.

Not to mention a potential house move on the cards. Lots to tell. And I am a horder that will need some prising out of my nest here. Lots to do.

Soz to all I owe e-mail to - I'll try and be in touch soon.

To be honest I am also sulking cos of all this. The words 'chocolate' and 'teapot' spring to mind. Damn my messy house. Never again. I will file and sort and sell and become... minimalist. Except for books.

Hopefully Fangworld will resume normal service soon.

In the meantime, I recommend Robert Rankin's Brentford Trilogy.

Wednesday, July 20, 2005

Food Abuse

There are days when my food intake ranges from the sublime to the ridiculous. In all honesty, it has aways been this way even before I had trouble walking to the fridge. Since I became a wheelchair user (and sometime hobbler in the house), as the cheery, take-the-piss sort of attitude to my disability has set in, I don't always notice how my state of being impacts upon the sort of weird food combinations or consumption methods I regularly employ.

On the very worst days, I don't eat regularly or at all, until Mr F is around. This isn't as bad as it sounds - I'm not an early riser, so at the most I miss 'brunch', and then Mr F is there and feeds me up in the evening. Upstairs we keep water and fruit, so I can snack if I want. This scenario is all to do with the stairs in our current house, which we hope we'll be leaving behind in a month or so. Some days I just can't be bothered with stairs. I like to have someone around when I'm doing them, especially on a bad day. Some days I can't be bothered with dressing either and (eek) more than a little wash, but because I was a lazy sod before being a crip, I sometimes haven't noticed I'm not doing it now because I am a crip.

To be brutally honest, even before all this happened, I was the sort of person who took a spoon to the fridge. This is a sort of ultimate feed-myself-on-a-bad-day tactic. What more do you need? Spoon. Fridge. It's simple, fast and effective. No washing up - except the spoon, which can be sneaked into the bowl to catch the evening washing up session... hence very little evidence of misbehaviour.

In fact, when I lived on my on in a studio flat, the fridge was at the end of the bed. Result.

Then there's unwrapping things. As I've got older and larger, I've switched from unwrapping pringles and biscuits (pringles for the savoury course, biscuits for dessert) to unwrapping fruit and salad bags more often. I try and ignore all the snooty health articles about buying organic stuff covered in soil because its better for you, as although I like the idea of eating organic things that have probably not been washed in chlorine (like many packet salads are) most days of the week they are just too high maintenance. Today I had a lovely meal of cherries, Nain's fruity oatmeal biscuits and white chocolate maltesers. Last Sunday teatime, 2 magnum ice-creams and a large whisky. Unwrapping. It's hard to see the bad in it sometimes...

Right from the beginning, I was a latch-key kid - both my parents worked full-time - and rather than being brought up to cook with real food, I was brought up to open packets and tins. Food in a hurry, whatever the reason. Whilst I have to agree this fast and lazy way has served me well into cripdom, when I moved in with Mr F (who was taught proper by his Ma), I didn't realise what a world apart from real food it was. For example, I hardly knew the difference between mash - made from real potatoes - and packet smash. Bless him, this really horrified him - especially my admission that packet smash was really nice to eat dry.

It is, though. And so is Bird's custard powder before you cook it, at the stage you put the sugar and mix.... oh, never mind.

A while back, I had to renew my DLA. Now, despite having no particular problem with my lazy food habits, I have enough of a sense to know it is not normally how 'normal' people eat. Consequently, I don't often mention it - somehow it's easy to just send it out into the blogosphere, although some of my closest friends don't know the full depths...
Mr F does, but more often than not it just makes him laugh (although sometimes in a sad way) and then cook us something yummy. However, a friend of mine had taken a job at a disability advice centre and as I'd recently had a full diagnosis she offered to go through the form with me to see if I could get a better award. Over the last year things have deteriorated slowly, so stuff Mr F used to do for me as a choice has slowly got to the point where we have begun to realise when he isn't there I don't or can't do it - stuff like, um, well, taking a spoon to the fridge rather than actually cooking, or not going downstairs at all - amongst other washing and dressing type shortcuts or non-starters that I'm sure many other crips reading will be nodding their heads at.

This meant I had to tell her. I wasn't prepared for her to be shocked though. We were doing the bit about 'what do you do to prepare a cooked main meal for yourself' and I'd just let slip about my spoon/fridge habits.

"Do you do that because you can't cook for yourself?" she asked.

"Well," I answered, feeling a little flummoxed "I was never really the sort of person who cooked in the first place..."

"Ye-es, but on a bad day, what would you do - nothing? Not even (with a little shudder) the spoon thing?"

"Nope, not even the spoon thing..." I mumbled, leaping on the chance to deny it. "But it's ok... I'm not exactly starving..." I wobbled a batwing to add a bit of, um, weight, to the argument.

She gave me a Look. "It's Bloody Not ok" she said.

And so it continued. Did I get dressed on a bad day? Well, no. But nobody sees me. It's not as though I physically couldn't - couldn't I? Did tiredness and pain count the same way any other kind of barrier did? Yes, she said, it did. It began to dawn on me she might have a point. Did that mean I didn't answer the door? Yup. But it's usually only chuggers or the god squad... Doesn't matter, she said, if your health stops you from doing it, it stops you. What if I lived alone? Had a month of bad days? I realised moving the fridge to the end of the bed and buying more spoons was not the right answer...

I am eternally grateful to her. With her advice, the award was better than it had been before and covered things like personal care for the first time. I can have Mr F's needs as a carer assessed as well, which we now recognise is long overdue.

Maybe, I said, I could even have someone in to do some coo-

"Stop right there" he said. "I do the cooking in this place. Just eat what I put in front of you, or what I leave in the fridge for you to put in the microwave - stair horrors banished all being well. It won't be as difficult when all you have to do is wheel into the next room, put it on your trolley thingy and take it to the microwave. A proper meal. And for God's sake, leave the bloody spoons alone."

Could this be the end of an era? An accessible house - will it change my relationship with food when I'm able to easily reach it without being exhausted doing the dreaded stairs - or will I still find myself raiding the fridge, spoon clutched in grubby hand, unwrapping the biscuits? They'll be quicker and easier to get to, of course...

I'll let you know.

Tuesday, July 19, 2005

Monday, July 18, 2005

Awful Peed-On Pillows

I have done it - finally got myself one of those swanky memory-foam, NASA approved pillows that are supposed to take all your aches and pains away and give you the most peaceful sleep you've ever had in your entire life.

Being a tightwad (Capricorn, of course), I didn't pay full price. I'd advise anyone who wants one to try to get it for less than full price, especially if you are on benefits. We didn't plan to go bargaining for expensive pillows, we merely stumbled on the solution, but it happened to work - and best of all fitted in with my habit of not paying full price for anything if I can possibly avoid it.

We were having a little trip out to cost bedroom furniture for our new bungalow (dunno if it's going to happen yet, but fingers crossed). The bed showroom had those memory foam products, so we tried the beds, the pillows, the toppers - the lot. I've been hankering after this stuff because it sounds gadgety and wonderful - but there's the rub.

The saleswoman came over with a little demonstration kit designed to show how memory foam is different from the ordinary stuff. She dropped a small heavy metal ball onto a small piece of ordinary foam. It bounced several times and rolled around a bit. When she dropped it on the memory foam, it stopped dead. Didn't even move the tinest bit. This was good, she told us - it showed how absorbing and cushioning the foam was.

Good? Unfortunately, when we tried the mattress, our arses did the same. Didn't appear to be able to move easily on the foam. At all. Undignified pushing and sinking occurred. It negated your every effort to move, slowing you down and absorbing the effort as you tried to push yourself to the edge of the bed. Oof. Y'see, thats the reason why they claim you don't move around as much in the night - it's not just because you're comfy - it's because unless your body put in a herculean effort that would wake you up - you bloody well can't.

Thank god I didn't just order one of these things based on the marketing guff. Didn't they ever think it might be a consideration for the same people it was aimed at? Those who have painful joints who want to make life easier in the first place? I'm sure super-fit astronauts had no trouble, especially in zero gravity, but reality has a bad habit of happening here on planet earth, especially to crips who listen to marketing claims. My niggly hip cursed me as I tried gracefully to heave myself off the bed without showing my pants.

We tried the pillows. They were better. The 'classic' shape was ok. It was like a 'normal' pillow - not those horrid weird shapes that are supposed to fit into your neck and give you the ultimate position. That's a rip as well. In vain I've tried those pillows that have this 'core support' inside- basically a couple of hard lumps of another type of foam... Mr F has taken to called them "awful peed-on pillows" rather than say 'orthopedic' pillow because of these bitter disappointments.

We decided to get one of the classic memory foam pillows anyway. The remaining shred of gullability in my soul for this comfort-promised land overtook me. Like the matresses, the pillow was heavy and solid feeling. The saleswoman went to get a new one - we had tried a demonstration model - and she commented it felt much lighter than the test one. We all had a feel. It was. These pillows are made from what the manufacturor calls 'shredded foam'. It appeared every other pillow other than the tester was sort of lumpy, with loose covers and uneven-looking. We started edging away until my bargain-lust kicked in and I asked if she would sell us the demonstration pillow for a discount.

Whereupon she did. If you want one of these (eeeek - expensive) pillows, then try it. Prod all the others, proclaim the display one is the only comfy one, and say the magic 'D' word. Ten per cent is about right but if the discount is less than a fiver, wheel away.

I have to say I like this pillow (I will be in trouble if I reject it), but it isn't what I expected it to be. It is heavy, and after putting your head on to it, you sink into the foam for a few seconds afterwards, giving a weird feeling of involuntary movement. If you turn your head, the foam behind it takes a few seconds to follow. Stupidly, but perhaps expectedly, I'd got the feeling of lightness and airiness from the marketing - not the unwieldiness and heavy density of the actual product.

Even if I wake up with an aching neck, I am still trying to convince myself that it is on a journey to re-educate itself on good posture, aided - not thwarted - by the Rolls-Royce of the pillow world. It is only aching because it has never had it so good, and it must adapt for the sake of gaining something better than it had before.

But here I fear the concept of 'better' may be subjective - by around 50 quid...

Thursday, July 14, 2005


Apols for the lack of posts but I am rather under the weather at the moment. Hopefully it will get a little cooler soon and the twitching will stop.

Had to go out today for physio, and on the way home as I wasn't feeling... as bad as usual, so decided to go to big retail park near my home to buy a quick something for a wedding we're going to tomorrow.

Everything went smoothly (yes!), so clutching a couple of carrier bags, handbag and keys, I made my way back to the car. Only to be stopped by this very young man and what looked like a shy new girlfriend. He offered to help me, and bless him, meant well, but do you ever get people who just try too hard and terrify you?

I strongly began to suspect it was not for my benefit anyway, but for hers. You know, the 'I help cripples' thing. He loomed over into my personal space and asked (too loudly) if I needed help putting the key in the car door (um, no - being as I was obviously on my own and had driven on my own). I declined, politely, and went on to transfer myself into the car with his offering help at every little movement "Do you want me to put that bag into the other one?" (um, no, I can do that myself...) "Do you need help getting into your car?", (no look - I'm doing it) "Do you need help with taking the steering lock off..." (no - not seeing as I was able to put it on myself) and so on, along with the more usual "Do you need help putting the chair into the car..." stuff people often say. I don't think he was trying to nick the car or my bags, I just didn't get that vibe from him.

After each offer of help, he turned round to his girlfriend with a cheesy smile - she, on the other hand, started to look a little freaked out. How can I put it nicely? Oh, whatever. The guy was seriously oily. Glinting. Even his hair was oily, dark curls slicked back with shiny gel. And - whoa! the aftershave was a bit strong. A lot strong. I think he must have been watching those Linx adverts - where the guy sprays a 20p and chucks it into a fountain, then the girl, finding it irresistible, jumps in after.

After firmly but nicely declining any more close contact with his aftershave, he draped himself over his girl and they headed off in the direction of JJB Sports. He offered. I can't complain. I smiled thanks at her and she smiled back, but looked kind of awkward - possibly not from being near me (you do get a sense when it's you after a while...) , but more like she was a bit embarrased by his overwhelming persistence.

After a few breaths of blessed unscented air I got on with loading the chair in. It was so hot I sat with the fan on for a bit before driving off. I watched the couple as they walked away. She didn't seem keen to have him put his arm round her, and did a little skip forwards, then turned to watch him as he edged closer again, obviously intent on recapturing her. Another little skip, and he actually reached out to grab her sleeve. She waggled it to shake him off. I pulled out of the parking space slowly and drove past them, at which point he'd wrapped his arms around her waist and had buried his face in her neck. We caught each other's eyes as I went by. It looked as if she had a struggle on her hands. So much was I convinced of this, that in a reckless moment I gave her a sneaky thumbs-down gesture - then instantly regretted it. She might think it was to do with the helping thing rather than the boyfriend-octopuss situation and think I was an ungrateful beatch.

But she didn't - in fact she raised her eyes in an expression of long suffering - and gave me the thumbs down right back!

I think his days are numbered...

Friday, July 08, 2005

Unkymoods is no more

RIP Unkymoods.

I thought Unkymoods were great. A free site where all you had to do was sign up and pick your mood of the day, which was then transferred to your blog. I usually changed my mood every time I wrote a new post, and sometimes if I didn't feel up to writing anything, would at least change the unkymood.

I've seen a few other mood sites, but none seem to have the fun and quirkiness Unkymoods did. To find another too soon would feel like being unfaithful - I was kind of hoping I'd click the link one day and all would be well. The artist guy who ran it did it free and for fun. The web needs people like that. It was a sad day when godaddy! parked its fat @rse there instead. No, I'm not gonna make that a link. Poosters.

Mr. Unky, if you ever set up your brilliant site again, I'll be back.

Monday, June 27, 2005

Object Lesson

I've been having some physiotherapy sessions to improve my 'core stability' (and hopefully see off a little pot belly which I need to curb before it really gets going)... This is the first time in my life I've had a physiotherapist understand my condition. We have read the same books, and are getting on quite well despite a few teething problems. Initially, I found the whole thing very emotional, and every little setback had me being weepy and wanting to give it all up. Now I'm realising that setbacks are the nature of the beast. I am so over the whole crying thing - until next time, of course.

This week, I have been an object lesson for some trainee therapists. They'd read the book and seen the photographs. Having a real live specimen do the moves in front of their very eyes brought forth a range of reactions - and there the physiotherapist and I had to stop them.

With hypermobility and hyperextensible skin, you can contort into some positions which others with a more - shall we say, average constitution - simply cannot manage. Many EDS/HMS people spent their childhoods grossing out their friends, not to mention audiences at the circus. I even saw someone who had to have been an EDS person on 'You've Been Framed' recently. It does my disability pride no harm at all to learn that people with similar genetic conditions to mine were circus performers. I even had a doctor tell me to run away and join the circus once.

But in one of the books we'd recently both read, a 'patient's perspective' chapter talks about being proud of a hyperextensible range of movement instead of finding it repulsive.... I'd never in my life thought of that idea!

When you do the contortionist act, either at school or to anyone who wants to know what hypermobility is, people will often react with disgust. This is not very self-affirming.

Instead, the book suggests we hypermobiles should be complimented for our range of movement - and this is what the trainess had to stop and consider. Patients do not want to be told they are gross, especially as they are probably in your care because of a problem and are feeling vunerable. Some of the postures are not horrible to look at - for example, a full foot arch is what ballerinas strive for - we can pretty much do it from first being able to walk. For any joint, although it may look sinister to someone who can't achive it, it is simply our bodies way of moving.

So, whilst I've been working on my exercises, my physiotherapist has been working on her compliments. We demonstrated for the trainees.
"What a lovely full stretch in that leg" she tells me. "Goodness grac- erm, I mean, what a long way, a fantastic long way back your fingers go," and so on.

It really feels good. I never realised I was missing it. To be the freakshow girl did have a sort of attraction, you sort of revel in it... So how can I put this new experience of being complimented instead of being an object of horror? It's like spending your life being poked with a stick, then someone comes up and tries stroking you instead.


Tuesday, June 21, 2005

My Life As A Token Crip

Several years back I worked in a community arts organisation. I'd just finished Uni and was starting my working life as a disabled person. I'd been through the mill as a junior un-politicised crip with my Senior Citizen's art group (who all considered themselves able-bodied, but thats a whole 'nother article....). Every week I'd get cuttings from their newpapers promising extra strength vitamins on special offer, or occasionally, from the group's most eccentric member, a pomegranate.

In contrast, workshops with other disabled people meant I wasn't faced with a room full of people constantly trying to diagnose or cure me. I began to think working with other disabled people might be something I'd like to develop.

As time went by, word a bona fide crip was working for community arts got through to the local council, who paid our wages. Big Dogs in the main office began to ask me to occasionally sit on panels and advisory groups for the benefit of local disabled people. I was wide eyed and naive back then, was grateful to anyone who threw me a boon workwise, and had never heard of the phrase 'token crip', so I did it.

I have to admit here and now that I wasn't some kind of 'aware' assertive activist by any means. I was a civil service numpty who didn't have much of a clue, and shit-scared of offending the people who paid my wages (which were part-time due to my crip-ness). I just wanted to get paid the little money I (and others) thought I was barely capable of earning, thank-you-very-much (doffs cap). I was disabled, I was tame - all in all, it was a winning combination with my employers.

Plenty of times, the meetings and ideas panels would be little more than a back-patting exercise that had little appeal to the local disabled community - maybe it didn't go far enough to meet their needs or interests, or wasn't widely accessible, or not enough money was spent on publicising it. This wasn't always a bad outcome for the council - a backdoor benefit of these failure was a good reason not to spend any more time or money funding another, or sometimes, evidence that disabled people weren't particularly interested anyway. As long as rumours of its short life got into the council's newsletter, they could be seen to be 'doing something' regarding their responsibilities and targets for inclusion. I began to stop feeling optimistic when something I'd been a panel member on suddenly disappeared without trace, or people I'd met through community arts went on it and told me how awful it was. I felt guilty, started questioning whether I was selling people down the river by turning up to things and giving my support when they were well short of equal access to arts in the area.

My little insulated crip-work-boat was floating closer towards the iceberg of reality... how do you bring about change when you being to see things differently?

The worst of these meetings, the final wake-up call - and most bitter of my regrets, was to sit on a county panel who were handing out funding to small local groups to provide arts activties for disabled people. My boss, who was a bit deaf in one ear, (and so a desirable trophy for these things too) was supposed to go, but her boy fell out of a tree and banged his head. I went in her place.

At this particular meeting there was a thousand pounds to allocate to local disabled groups in a small, rural area up in one corner of the borough. It was the kind of gentle, but totally banal place where entire families of people lived, never left, then quietly died. But it had been earmarked for 'disability arts' funding. Frankly, whatever or whoever got the money in that marginal place wasn't going to get the council people any admiration or kudos, and they weren't in any disability arts networks who would give them credit for allocating the money well, so they didn't really care where it went. Strictly duty for the less fortunate, ladies and gentlemen.

Unfortunately, for any discreetly burgeoning disabled talent in that place, there was one group in the district who were front runners to get the money. They were a small group of disabled people who ran an arts magazine, feted as "by disabled people for disabled people". This is a phrase that generally means good things, so I relaxed - until they showed me copies of the magazine.

It wasn't actually a disability arts magazine in an informed sense of the word. The people from the council didn't know this, and neither did the people producing it. I was only just beginning to subscribe to DAIL magazine , but even so, I got the feeling something wasn't quite right.

What it actually was, was a magazine for a group of friends in the area who were disabled. Nice for them, but only for them and their families. I'm not saying this sort of project shouldn't get support too, but disability arts money is disability arts money. Drawings of dogs, poems to dogs, about dogs, budgies, cats or fish, photographs of cats, and more cats, even disabled cats, ain't disability arts.

This time, I thought, could be a turning point. I could speak out, question, change minds! Help make sure the money got allocated to true, red-blooded disability arts projects. My first strike for the awakening activist inside!

It didn't go as planned... I took a deep breath.

What was disability arts all about? I started by asking them if they knew. "This is it!" they said, shaking copies of the magazine at me "It's by disabled people for disabled people, isn't it?"

"Y-es," I said, "but it isn't disability arts. Look at the content. It's about their pets, mostly... and some puzzles, and some nice drawings, but none of them are about disability..." this trailed off into a kind of silence where I could feel horrified vibes seep towards me that whispered "This woman is insulting cripples...."

I fought for some poise. Like a poker game that suddenly gets serious, stacks of silence built up in the air. The action was back on me, but nobody thought I had a hand worth playing. This is bad news whatever the game. Your opponents will stomp all over you.

I rallied. "What I mean is," I said, fighting for some eye-contact "this magazine is recreational pastime stuff, things like pets, recipes, puzzles, advice on buying computers (a truly mind boggling article about 'how the internet is accessible TO YOU' that included a diagram of a computer workstation with labels pointing to 'mouse', 'desk' and 'chair', and a little statement underneath saying how they couldn't give specific advice because you had to get the right thing for you, which might be difficult if you were disabled....) I held it up.
"This is the most disability specific thing in the whole publication, but it doesn't contain any real information that helps disabled people specifically."

(Another whole other blog entry is quality in disability arts It shouldn't follow that if disabled people do something that isn't very good, everyone should pretend it's brilliant so not to upset any feelings - another hurdle with this, although I wasn't brave enough to go on and say it at the time)...

Blank looks. I was on thin ice, starting a long skid sideways.

"Look at the content," I reasoned "This isn't about disability." Blank looks. "It's the same sort of things any group of people might write about - it could be by older people, kids, any group of friends - which is nice, don't get me wrong - but it's not about their experiences as disabled people. This is what disability arts is, and its not disability arts."

A frosty silence now gripped the room. A radiator shook noisily. I thought I could see the surprise on people's faces that I'd said anything at all. A couple of people broke embarrassed little smiles, raised eyebrows - as though they were dealing with a child. I felt totally, utterly alone. They didn't want to hurt me, but I was so far behind on this it someone was going to have to put me straight.

A big, flowerclad housebrick of a woman took control with another of those little smiles.
"These are very disabled people, who write this magazine as a way of forgetting their problems," she said carefully. "We think it's brilliant they've managed to get this far - some are real characters!" She gave another little laugh and sat back. Uh-oh. I was messing with real characters!
I paused, which was a big mistake. Like a well-honed pack, a youngish man lept into the gap.
"We know it has its shortcomings," he said in an ever-so-reasonable voice, rubbing his nose fiercely, (and a little self conciously, I thought), "but it's not our job to judge these people. They are making the best of it, and at the end of the day, they are an active group who really want this money. I must admit," here with a bit more more nose rubbing, "that I had a conversation with their editor yesterday - and," here he looked around to make sure he had his collegue's support - "I might have hinted to her that the decision was... in the bag, um, well, that is to say, I told her no-one else was in the running. And she has promised to improve the quality by publishing the next three issues In Colour."
"Oooh, that'd be lovely" another lady chimed in "I could really see that looking pretty! They'd really love it..."
I could feel my junior self sagging. I didn't know where to go with my argument without sounding like I was depriving these poor very-disabled cripples and taking away their one joy in life. I was being a jobsworth, invited into their decision making process to see how supportive they were of disabled people, and bloody cheek upstart that I was, I was biting the hand that fed me, getting all nasty and political, and standing (well, sitting) in the way of other disabled people's artistic pleasure.
How could I deny them that small pleasure?
I managed a little croaky noise. "Quality is important..." I said, one hand resting limply on the magazine's cover.
"Yes, fair enough. But this is it. They are all disabled..." said flowery housebrick woman, clanking a heavily braceletted hand on to her own copy. "No-one else has applied for this money anyway, so we if we don't give it to them, no-one'll get it and it'll be carried over in the accounts to Christmas, when they'll only apply again anyway." Her eyes narrowed. I had nothin'
I managed one strangled last gasp under the weight of the glares
"Ok then..."

And left that odd rural office with the sense I'd lost...

I learned the hard way what a useless, thankless and souless exercise it is to be the tokenistic-crip-panel-whore. Say yes to every panel who ask, who only want you only because you walk funny, who will be horrified if you try any big moves - like sentences. Or reasoning. Or opinion. Just eat the biscuits like a good crip and be grateful you're being paid to be the mascot...

I stopped doing panels after a while. As I began to speak out, sometimes getting it right, sometimes getting it wrong, I began increasingly to feel like working within the system only took you so far. Could I really change things by going to a meeting and ranting at people who simply didn't understand, however good their intentions were? On occasions people looked at me if I were mooting the drowning of puppies. If you want to bite hard, it's hard to simultaneously have your neck in the noose.

However, it wasn't a completely useless experience. It made me decide which side of the fence I wanted to be on. Mine. Ours!

Tuesday, May 31, 2005

Just Dropped In (To See What Condition My Condition Was In)

Yeah, yeah, oh-yeah, what condition my condition was in

To celebrate the additional pain being caused by my new physiotherapy program, and to rebel against the recent ruling against cannabis being used legally for the relief of chronic pain, I had a little foray into the world of herbally enhanced Cadburys Bournville Cupcakes this weekend.

I don't need to use cannabis regularly to relieve pain, nor do I think it the be-all-and-end-all to pain resolution, but it does occasionally reach places that nothing else is reaching. Getting stoned is also helpful occasionally just because I'm human and it's the early 21st century, so draw your own conclusions. It's been a crazy year so far.

I woke up this mornin' with the sundown shinin' in
I found my mind in a brown paper bag within
I tripped on a cloud and fell-a eight miles high
I tore my mind on a jagged sky
I just dropped in to see what condition my condition was in

My general philosophy is where drugs like this can be cultivated in small amounts for personal use, if that use is benefical and there is a proven medical condition present, then for god's sake, it's time for the state to back out. If it works, what's the sense in persecuting people who are not a threat to society?

(Yeah, yeah, oh-yeah, what condition my condition was in)

My neck was sore. My normally good joints (left elbow, left ankle, jaw) were threatening to flare, my neck - which for some reason I just can't stop tensing when I do my new exercises - was giving me royal gip, my right knee was grizzling, and I was just feeling a little tense generally. I need to get an accountant to manage my paperwork, and people who are good at maths sort of flummox me, and I'd set myself a goal of doing this before June. And now May is deciding to end, just when I was getting the hang of it.

I pushed my soul in a deep dark hole and then I followed it in
I watched myself crawlin' out as I was a-crawlin' in
I got up so tight I couldn't unwind
I saw so much I broke my mind
I just dropped in to see what condition my condition was in

As I may have said before, I don't seem to get addicted to stuff, so taking drugs doesn't seem any big hoo-ha. My codeine tolerance is usually way up, but the alternative is pain, so I'm cool with that. Opiates sit well with me. The best trip I ever had came from a large dose of morphine after bone surgery. I watched, possibly alert, as William Blake's muscular angels fought tempestous battles with evil-eyed devils on the wallpaper opposite my bed, as the nurse's bodies swelled and swayed like hot wax in lava lamps, and night and day raced around each other until 3 days later, when I was suddenly watching television and eating a delicious ham and mustard sandwich - the best I've ever tasted. You have to look at the alternatives in every situation, and in mine it was coming to terms with the fact that some doctor had just sawed off part of my shin and pinned it in little pieces under my knee. The hallucination was obviously the better way to get a bit of distance from the reality of the situation. I've not tried many other things, although I have a sneaking suspicion they would send me snooka-loopy, like a normal state Kelly Osbourne, possibly - who recently admitted in a Marie Clare interview "I don't like speed, and cocaine literally sends me fucking crazy... but I found I could hide (being on opiates) very easily." Everyone was worrying about Jack, and Kel just slipped quietly onto painkillers- as have several other top hollywood actors, making crip medication officially A list in the process.

(Yeah, yeah, oh-yeah, what condition my condition was in)

So - to the cakes. My deviant activity over the weekend amounted to eating 3 cupcakes, then watching 'The Big Lebowski' - (an excellent film and vehicle for this little interweaving ditty 'Just Dropped In (To See What Condition My Condition Was In)' by beardy Kenny Rogers). I then consumed some vastly inferior (but I ate 'em anyway...) milk chocolate maltesers - the white ones were nowhere to be found this weekend - eating some pringles - then some other things, having a little snooze, then waking up to watch a hedgehog on a nature programme go out looking for a girlfriend. At the point the hedgehog got his girl and started shagging her, I decided to go to bed before I started hallucinating (god-knows-what, Bill Oddie, probably), whereupon I put my ipod on shuffle and went to sleep, offically a criminal for the day. Woo-hoo.

Someone painted "April Fool" in big black letters on a "Dead End" sign
I had my foot on the gas as I left the road and blew out my mind
Eight miles outta Memphis and I got no spare
Eight miles straight up downtown somewhere
I just dropped in to see what condition my condition was in

Woke up this morning to find I'd slept a full 12 hours, with various sites of pain lessened and improved, and a resolution not to touch the evil weed for... oh, a good few weeks. My bowels and stomach are saying "What hit me, man?"

The reason I don't take cannabis regularly is not a moral issue, nor is it an effectivness issue, as it surely does work when the painkillers aren't helping. No - the reason I don't advocate regular cannabis use for myself is the most dreaded side effect I have experienced in all my legal and illegal drug use to date - the munchies. Cannabis will turn you into a gastro-demon. Under it's dreaded influence, no food is safe, no biscuit is hidden. Cannabis makes me gorge on pringles, maltesers, ice cream, pear drops, cheese, digestive biscults, peanut butter and strawberry jam, more cheese, and ice pops. And all that binging isn't good for my arthritis.

Quid pro quo, man, quid pro quo.

I said I just dropped in to see what condition my condition was in
Yeah yeah oh-yeaaah

Wednesday, May 18, 2005

Crip Logistics

I know the day is coming when I have to hand over my car keys (largely) to a support assistant. I say largely because I will do short distance domestic driving occasionally, but driving for my work will be done by someone else in future.

I often need to go out of town for projects now. This is a good thing for me as an artist, cos it gets me around and networking. It was something I had to decide to do, or not to do for career development recently - basically, stay local and work with organisations because they were close by and I was being a limited crip, or go large, and travel to more versatile opportunities and meet people. Not that I work in projects all the time, but if I want to be paid independently by funders like the arts council, I also have to be prepared to travel to their offices and events they organise so I can raise my profile.

Hence all the hotel rants springing up lately... there's more on the cards!

I'm ambitious. For a while, all that was really holding me back were the crip logistics of going places. I'd worry about long journeys, the driving, the staying overnight and pacing myself. At first I convinced myself instead I would be happy contributing to local arts things, painting or printing 'pretty fine art furniture' - souless contemporary art pieces people could hang on the walls of their trendy homes.

But I'm too much of an old tumb-thumping-whinge-bag of an artist to be really content doing this. I don't like begging people to look at my portfolio and be worrying about making regular profits. That bit in particular is hard to sustain if you have a fluctuating condition. Anyway, I'd rather make art that reflects my life, and as a crip I have a lot to say. Artwork that travels round for a while means I have a burst of activity, then I can flop for a bit. In the meantime it gets out and about so people don't forget who I am, and I sit at home in my dressing gown writing a blog and plotting the next one, hoping to make it less strenous - in October last year I truly went to bed so exhausted I thought I might die. It doesn't make for a long career to do that too often.

Disability Arts has got my heart and soul, and it's an exciting time to be out and about as a disabled artist. Sod trying to be in with the local snobby artists who look down on me cos I'm disabled. People are beginning to wake up to the fact disabled society has been under-represented in the arts and art history (in history and the human race too, I hear you cry...). The Arts Council is thinking seriously about supporting disabled artists properly. Like me! Just gotta go get it.

Now at this point, I should say re. Disability Arts -it is not a situation I can explain fully as part of these few musings. Politically there are a lot of ins and outs, right ways and wrong ones, and if you're interested you may be aware of these, or maybe if you have a growing interest you'll look for them. But for this blog entry understand that I intend to develop my career to be a part of this world, in fact I am already making progress, and I want it to continue. Crip logistics are not going to stop me - realise what a huge revalation this is - it's still happening long after I thought things would be sorted. Will they ever be? Possibly not. But for the first time I can say decisively I am in for the long haul. yes. Thinking big. National. International?

As any crip will know, organising your life can be complex. Around January time this year, I was seriously questioning myself as to whether to go onto Incapacity Benefit instead, in the light of fully understanding my condition and the prognosis. My doctor would have signed me of no problem. Stress free. That, versus making major changes - as I've already said, house, wheelchair, car, bed all have to happen - and on top of that, work. Mainly driving.

As I can't drive alone anymore, for an artist with an unpredictable, oddball career, imagining how that might work is a nightmare. My timetable isn't regular. I might need someone driving me for a week, a weekend, a couple of hours a day, one day a month for six months, overnight stops, and on short notice for conferences and the like. It always makes me laugh when I read about Mariah Carey and Jennifer Lopez having entourages, because this is kind of how I view the way I need people to work for me. My care needs in themselves aren't complex, so this person would be mainly a packhorse and driver. We'd spend hours together, so we'd have to get on - it would help if we had similar interests. Similar tastes in music - and similar attitudes to driving.

This has been one of my biggest stumbling blocks over organising somebody. I love driving myself. I don't want to sit and watch someone else do it instead. I'm shit at navigating, but I love speeding around places. I'm currently working somewhere that is a 120 mile round trip - much too exhausting, but also wonderful to be alone in the car, in the sunlight, driving fast, stereo on, ipod hooked up.

Music is the next big issue here. If I'm employing them and they're working for me, can I insist on my music being played? Would we have to share eartime? What if they liked, say, Brynn Terfel or Johnny Mathias (an old childhood nemesis)? The atmosphere could get nasty. I need Muse, White Stripes and Jeff Buckley - would it be cruelty if they didn't?

And the speed. Now, in some ways, getting off my speeding habit might be good for me. Not that I've got points or anything - my current car is a little supermini thing, 1.4 - basically, put your foot down, it goes. I know some men reading this might be laughing, but what the hell, I'm more of a town cafe racer than a motorway racer - the little car hasn't got the kick over 70 mph. But at town speeds, well, I can say with confidence some years ago I did an arts project with some boy racers in my town and I beat plenty of 'em off the lights. Yes. I was an honorary girl member by the end. I think it made me cool with a bunch of 18 year old chavs. Hmm. Because if I am speedgirl, and if my new driver is not, might it drive me a little bit round the twist? Overtaking stuff will not longer be my decision - what if my new driver is a granny? It will be best to interview / advertise on driving skills and not care needs, so I might avoid the granny factor there. But god, I'm just nervous we won't get on and they'll hate me, or I'll hate them, or there's a power struggle between me thinking I'm the boss because I'm employing them, and them thinking they're the boss because I'm a poor helpless crip who can't drive...

We'll just have to see how this one pans out. At least I can sack any insubordinate ones - because these are my crip logistics, and I'll be in control... at least that's the plan.

Tuesday, May 17, 2005

Begging For Toys?

I need a new chair. I need a new car. I really need an adjustable vibrating bed (neck injuries after car accident). I need a power trike like a four year old needs lollipops.

The approximate cost of a new chair, new car (cos they have to fit each other), new bed, and new trike (strictly for fun) is around 37,000 quid.

Oh, and I need to move house too.

I might get the chair through Access To Work, or at least 95% of it. I might use motability for the car (although Mr F dead against). Maybe my accident compensation will pay for the bed - but then again that sum would also include things like loss of earnings, so they'd be blown on the bed and not used for other essential costs those bastards don't seem to be able to claim for. That's another rant another time. We could go shared ownership on the house if the housing association don't take us in for accessible accommodation as per my medical letters. Detached next time, even if we end up in a bloody shed.

I might set up a begging website for the trike though. Nobody is going to have funding to buy me a trike, are they? Because lets face it, disabled kids get toys and treats. They're cute, they're dying, and they should have it, of course. But do you see any charities distributing fun stuff to disabled adults? Of course, there are some people who are the recipients of such things, but they are usually very, very disabled. I'd still argue that for your bog-standard living-privately on a low income crip, no one really dishes out for the fun stuff. You get what you need, sure (or not quite, I'm sure there are plenty of heads nodding here...I do know I'm lucky to live in the UK), but I bet there's too many of us who don't have the money to spend on fun accessible things... like trikes.

My mistake was visiting a mobility roadshow a few weeks ago and picking up a brochure from every single stall. Now I know what can suit my needs, make my life easier - and most importantly - make it fun. (16 miles an hour round Newbury racecourse sure blows away the cobwebs)
But is any of it within my reach?

Is. It. Arse.

There was this woman in the states who set up a begging website because she needed to pay off her credit cards. Now a quick trawl on the internet will find begging websites all over the place.

I'm sure there are plenty playing the disabled card. However, I wonder how many are disabled people saying, ok, I've basically got a roof over my head, some form of transport/access gadget/wheelchair (if not my preferred one), a bit of money for biscuits every now and then, I'm not suffering particularly and I'm not about to die tragically, but I really want some high end, high fun accessible gadgets? Lets be honest here, I can do without them, I don't have to spin you a sob story or anything, but I'm sick of the bloody wheelchair service and I want me one of those big flashy trike things, and an adapted motor home, and an accessible yacht, and ya know that Larry Flint? Well I might just fancy some gold plating on my wheelchair too...

Its about time we stood up (in a new posh standy-up chair thingy if need be) and said, dammit, I want some fun things!

There could be a new Fang website emerging shortly. I'm really sold on this idea. A begging website to get the extras with no heartstring tugging required. A no-nonsense, honest approach, that says "Yeah, I'm a crip, and life's chugging along, but due to not being an equal member of society yet I can't quite get the income up for some fancy accessible gadgets... wanna help?" Yeah. It could happen. All I need to do is get meself down the bank, set up an account, and away I go. On a smaller scale, Private Eye does a section called "Eye Need" and I had thought about putting an ad in there, but all those people are desperate - whereas strictly speaking, I'm not.

Of course, if the site was successful, it could be opened to other crips in the same boat. Just make a case for your 'wants', however big or small, and post it up there. It could happen...

But hey, if you don't ask....

Any early requests?

Monday, May 09, 2005

Do The Needs Of The Few Have To Outweigh The Needs Of The Many?

Call off the cavalry - my hotel drama disolved rather satisfyingly after a few polite but firm phone calls. After a shaky start the hotel staff rallied and found a double bed to put in place of the two single beds that had originally been in the room (remember - the ones no-one told me about?).

My mission is not over, though - I'm due to be doing more travelling for work so need to use a few of these big hotel or road travel places - with that in mind, an ongoing mission for me is to make it easier by helpfully giving them feedback where things could be changed or improved (no, I'm not being sarcastic - praise where praise is due, and constructive comments when it's not...). So in the last case, I will be asking the company to change its website so disabled users can specify when booking online (why shouldn't we get the same discounts at the same convenience as everybody else?), ask them to ensure disabled people have a choice of twin and double rooms like everybody else, and ensure where there is no choice, people are informed in the normal processes as any other customer would be. I only found out by accident - not good enough.

I know it's not an ideal world, nor will I singlehandedly change it, but like I said before - you have to speak up. At least that way your conscience is clear.

I suppose this means by rights I should contact the other hotel too. Bother. There is sometimes the feeling that with some places, you'd need a full time commitment to chasing them up, and with some, a word in the right ear will have some effect. I guess you have to pick your fights.

Since I have been online, I find it much easier to complain, and one tactic that is especially useful is the ability to send copies of the complaint all over the company - to the branch concerned, to their head office, to the sales and marketing departments. That way, somebody does not file your complain under "it's only them" and forget about it, because in the 'cc' section, they can see their boss and their bosses boss have been sent it too. I did this with Sainsbury's recently over car parking at my local branch, and after weeks of having the local manager dodge my messages, he suddenly became very helpful. Sadly it didn't last, but I don't mind so much because in doing that, his boss at head office also replied to me. Generally the more people you copy it to, the more chances you have of finding out other important e-mail addresses of people higher up in the organisation. Now the car park is having problems again I will write to the head office boss to ask him why his local mangers cannot sustain their disability awareness past a few weeks. Of course, cc-ing that to the local manager who obviously thought I'd go away after a few temporary changes and some nice noises will be very satisfying...

Anyway, back to the most recent access drama. We glided in to the room (well, I did - he followed with all the bags...), with me holding my breath to see if it would be an ordeal or not. I immediately felt like it wasn't going to be. It was situated in a quiet area of the hotel - out of the way of corridor traffic, round the back, looking out onto a garden and some trees. The double bed took up less space that two singles, so plenty of wheeling room. Low storage to aid unpacking. The bathroom had a nice low washbasin, rather grand looking with ample room on the side to put out things you didn't want to stretch for when washing. The bath had a large flat area at sitting height you could transfer on to, was graded inside with several places you could sit or lower down into, and with handrails in sensible places. There were actually two showers, one low down, so you could sit in the bath to use it, and one higher up, so a standing shower was also possible. Lever taps. Handrails by the toilet. A big enough space to turn the chair round with the door closed. A good sized mirror set low down. And clean. Hurrah!

Then Mr F came in. The first thing he noticed was unless he wanted to 1) shave his chest, or 2) cut off his head whilst attempting to shave his face, or 3) bend down at an angle not condusive to the health of his back, the mirror was way too low.

He glared at the washbasin - similar issues. The basin came up to his mid thighs. It was like watching Gulliver in Lilliput.

Over at the bath, which I was already starting to beg for, he pointed out his much loved soaks in the bath could not be accomodated as it was very shallow. He didn't actually say heaving the bags and my wheelchair about means he looks forward to a long soak in the bath, but I know he does. His back isn't a major issue now, but it might be in the future. If a carer has a sore back - who cares for the carer?

I began to feel a bit guilty, which was stupid. Just for a change, it was me who was getting my own way here. It was his turn to feel left out. Against my wildest dreams, we'd stumbled into a great accessible environment for me that wasn't AB friendly. Normally on my own I'd not even have noticed...

How ironic is that?

For the first time I had to listen to him complaining about the bathroom. I tried to sympathise whilst at the same time trying to hide my glee that I could move around without getting sore or tired because the environment suited me. At times like this - when the person you love is the one struggling - you do not feel a sense of payback, justice, whatever. There are many circumstances like this where i feel like being the one saying "I told you so" or "Now you know how it is for me"... He knows how it is for me, and he doesn't go around telling me that it's right or wrong - because where's the progress in that?

What could have been changed? I suppose a longer mirror would have worked, or two mirrors like there were two showers. I don't know about the bath being deeper - because it wasn't very deep and there were two different levels to lower yourself on to before getting to the bottom, a deeper bath would have made that more difficult. There would have to be a suitable mechanism to lower yourself into a deeper bath - which I'm all for - I like deep baths too. (Although being on the petite side, anything more than a birdbath is deep to me...). I know you can get adjustable washbasins, but I've never seen one in a hotel - that would have solved that problem. As carers get older, they have health issues too, and although we're hardly pensioner material, accessible things for one are just that - with features like this, the balance shifts from helping one to harming the other - not what you'd call a real solution.

I know when we finally move to purpose built accomodation, it will be great for me, but I'd be unhappy if that meant he couldn't have his wallowing baths, or I was the one watching him strain to use something that wasn't designed to accomodate the way he does things too.... In this circumstance, complaining to the hotel that the accessible room I'd requested wasn't accessible for my able bodied husband and carer seems a bit of a joke, doesn't it?!!!

Wednesday, May 04, 2005

More Pesky Hotels

Once again (yes, my social life has picked up...) I am off to be at the mercy of another 'accessible' hotel. I booked with a big hotel chain this time, thinking, stupidly, because there was an access sign on their website, that they might be more on the ball with their premises.

To some extent this is true. They have parking. They have handrails in the bathrooms. They have lower storage space for clothes. But do they let crips loose in a double room? Na-ah. Only twin rooms, cos everyone knows we're all single, right?

Except I'm married. And I'm looking forward to a nice getaway with Mr F, husband of less than one year. And the last thing I want is to sleep in a dratted twin bed - and especially not to find out by a short e-mail the oh, by the way, madam, you know that double room you booked? Sorry. We only do twins for disabled people. That is alright though, isn't it?

No it's bloody not.

First off, I rang the hotel (as always) to discuss access with them. Fine. No mention of only twin rooms, although I said I wanted to book a double - did they do accessible doubles? Apparently yes. When I found out how much it was, I balked, and asked why the prices weren't the same as their website advertised. Because you have to book online, a-ha. Its cheaper on the website. Fair enough, it's common practice - although I prefer not to do this usually in case you can't specify stuff like access, ground floor room, and so on. So, I was concerned whether a disabled customer could make access requests online, and the staff member assured me there was a form where I could specify an accessible room was required. So that was ok. Rightie-ho. (Are any of you shaking your heads yet?)

So when I went through the booking process online, there was no form. Hmmm. But there was a booking reference number given to me after they'd taken my money and a call centre number to ring if you needed to make any further arrangements. So I cheerily rung it and explained the situation. Could I please have an accessible double room?

"No." she said. "Can't change any specifications." and just stopped speaking, like I might say "Oh, thank you" and go away. Bloody fussy disabled people, always wanting something extra... etc...

Instead, I said "WHAT?"

She realised pretty quickly this was the wrong answer. "Perhaps I could ring the hotel direct and make arrangements for you?"

I said "YES!" ans then after a small pause, added "Please".

Now, I'm a bit cantankerous, and frankly in my old age, suspicious of young sounding people in call centres. When I was a student, my flatmates worked in call centres, and it's a crappy job with crappy treatment for crappy money. Consequently, commitment to the job was not high, so to cover all the bases, I dropped the hotel sales department an e-mail saying this was my booking reference, I'd like an accessible room, and was it possible to reserve parking?" It's a bit sad when you're driven to do stuff like this, but honestly, previous bad experiences have the habit of turning you into a bit of a manic sometimes. I mean. look at me.

So I got home recently to find this e-mail saying (but not answering my question) that there was parking, and telling me where I'd find it. Not a direct no, we don't reserve it, which I'd not have really minded about, not being on my own. The real purpose of my contact had been simply to warn them a wheelchair user was imminent. On the end of the e-mail was this little remark, by the way, you're not booked in a double, it's a twin - ok?

Cue fuming and the inevitable question every crip has to face at one time or another... AM I GOING TO DO ANYTHING ABOUT THIS?

Like what? I really can't be bothered to find another hotel and go through all the bloody access foreplay all over again. I decided to ring the hotel and barter.

Could they move a double bed into the room? Where they aware that offering access wasn't really effective if the customers could access specific information about what it was? Would they give me a discount if they couldn't move a bed? Why doesn't the staff, the website and the call centre have anyone able to explain the policy of crips always = twin rooms? Do they swap other customers who've booked doubles into twins? and so on. Worst case scenerio, twin beds and a discount. Best outcome, a double bed gets put into one of the accessible rooms and the hotel staff, call centre and website enable people to specify double or twin accessible room in future. I feel you have to do this went you're a disabled person, or people'll never change. And it's cathartic to get something done, either for yourself or for everyone. Better than just sitting here and venting all this up, then going into a single bed muttering about how unfair life is. Spread it around!

So I'm ready to fight another day tomorrow. They're ringing me promptly at 9.00. Diligence to my concern is good, but I have shot myself in the foot - and done myself out of a lie-in.

You can't have everything, can you?

Tuesday, May 03, 2005

Fish Poo Stew

I'm supposed to be out shopping for an outfit to wear to various weddings and events this summer, but instead, I'm lurking at home suffering from a stomach upset. It's probably to do with the weekend, well, definitely it is. There are so many culprits over the past three days I can't be sure whether it's bad chinese food, alcohol, playing in the dirt (I'll get to that in a minute) or scoffing loads of white chocolate maltesers and a white chocolate maltesers ice cream. I do love white chocolate maltesers, and as a demonstration of how sick I'm feeling, I had some left, but threw them in the bin this morning as I can't bear to look at them.

Mr F and I were due to go out with a friend (whose hubby is working away) for a chinese on Friday, but a frantic phone call that afternoon revealed she'd got home to find the pump in the fish pond wasn't working. This is a big deal cos they have lots of expensive koi carp, who are breeding. So we went over to assist after realising she was tired, emotional, and playing with electricity and water trying to get the pump started. At 7.30 Mr F was up to his thighs in pooey pond water scaring the koi, and at 8.00 we gave up and decided new parts were in order, which would be available from the garden centre on Sunday. I can't help much with these practical things, so I just sat and watched them wade around in the pond. Shame.

On Saturday one of my mates in Leicester had a 30th birthday do. We went to a chinese all-you-can-eat buffet who had cunningly declared they were accessible to get our business - not according to the two wheelies present they weren't anyway. Luckily where were people in the party who were able to lift us over the step, which was twice as chunky monster bastard as the one at the hotel in Brighton. A big crowd gathered, and we did a few royal waves. On occasions like these I try to imagine I'm just employing an entourage, which helps make me feel less self concious... The rest of the evening passed in a blur, so I think it was good. I remember the manager looking horrified as myself and my friend asked him to help carry us to the toilets "and you'll have to help us on too, you know..." (as they didn't, after all their claims, have accessible loos), but we were joking. He probably didn't see the funny side, nor believe us when we said we were disability access inspectors, but maybe he'll remember telling people your restaraunt is accessible - when it is not - means drunken disabled patrons will take advantage of your lies and riot on you.

Mr F stayed at home, won a large sum of money in a poker game and played paintaball on Sunday morning.

We're turning into poker fiends, but that's another story.

Sunday day brought the trip home for me. In the afternoon there was another attempt by Mr F and Kate to fix the pump. A new motor was put in. More pond wading. It all got very complicated, and once again I was completely no help. Kate kept apologising for wasting our time, in between her and Mr F getting covered in fish poo. The pump was absolutely full of the evil stuff, so to keep my hangover in check and forget about being as much use as a chocolate teapot, I sat on the expansive gravel path and tried to find something to do. I started collecting suitably shaped stones to make a piece of art on a big slab of stone by the path. I was trying to make myself scarce, really. When you are unable to do practical fish poo projects, feighing interest only gets the people struggling to do the job more fed up. For them, nothing seems to work, your 'helpful' comments fail to have any impact (being based on sheer lack of insight), and you are dry and clean to top it all off.

First I did a sun. Started out with a small circle and surrounded it with swirly rays. It didn't look right with the rays, so I made it a bit bigger. Kate looked up at me. "You're a 35 year old child" she said. It's true. I am. The afternoon sun was hot on my back. The sky was blue. There was a gentle breeze. 30 feet away from me two, people were wading around the pond frantically seeking precious parts of the pump mechanism that someone had dropped into the deep end, and I couldn't do a damn thing about it. Time like this I realise disability has its up sides too.

I did a bird next. This was more difficult because there wasn't was much room left on the stone, and I needed smaller pieces. In retrospect, complaining loudly about this was a mistake compared with the dramas happening over in the pond. Shouts of disbelief and a few sludgy weeds were thrown in my general direction, forcing me to retreat to a patch of lawn further away and go to sleep. The bird could have had more detail in it but it just wasn't worth the hassle. Mr F wearily crawled home, trailed fish poo around the bathroom, got into bed, and fell asleep til Monday afternoon, whereupon we tried to eat our own body weight in various chocolate confectionary.

Woke up this morning feeling extremely rough after three days of eating and sitting around playing in the gravel. So as you can see, there could be several culprits for my stomach upset. Funny what bank holidays do to you. Always need another one straight after. Watching others work, or supervising as it is also known, is a role I seldom refuse.

The pump still isn't fixed, and tonight is round three. I might stay at home this time. I hope they don't scatter my artwork.

Wednesday, April 13, 2005

Beyond Madness

Amongst the malestrom whirling around me, I have had a few simple thoughts:

It was a historic week last week. I feel bound to add my comments.

One old man died and two old people got married.


The Pope's coffin. I keep on hearing how simple it is. A cedarwood coffin, then two other caskets - one zinc and one oak. Then the marble slab on top... Doesn't 3 or four layers of coffin, no matter how simple, seem a little... less simple?

And did they really hermetically seal it? Why? Why?!

And Michael Jackson. Did he touch those boys? But more fundamentally, why is he hanging out, showering with, etc, etc a bunch of juveniles in the first place? Isn't that wrong from the off anyway?

And what happened to his monkey? Is it still alive?