Fangworld

The Best of Fangworld

2010-06-08T21:02:00.008+01:00

The following links will take you to posts within this blog that I enjoyed writing.

Biscuit Sinner

Possessed by Bob Ross

Silly Songs - The NHS of Whatever

Being Blessed

Me and My Big Mouth

Apology

Fly my pretties, fly!

You Better Shape Up

Is that a shotgun in your pocket or are you just pleased to see me?

An Institutional Hotel

If there's anyone out there, enjoy!

AF

Agent Fang comes out

2010-06-08T20:07:00.006+01:00

Originally when I started this blog, it was for the purpose of cathartic ranting. Rubbish hotels, dealing with my impairment, crappy employment experiences, you name it, I bitched about it. It was great. Another great thing was that a lot of other people were doing it too. For a while I felt a real sense of online community with other disabled people. Blogging was a new craze and we owned a little corner of it. Then, one by one, people started disappearing, although many good things remain to this day if you look for them.

My favourite blogs from back in the day were The Perorations of Lady Bracknell and Diary of a Goldfish. In 2006 Diary of a Goldfish started 'Blogging Against Disablism Day' which has been an annual event each May ever since. It's the most wonderful, spontaneous and powerful thing I've ever seen anybody create. If you don't know about it, do check it out here - Blogging Against Disablism Day 2010

My posts became less frequent as I developed my career as a visual artist. Sadly for Fangworld, I started staying in Travelodges which were bland and boring but which had at least clean and basic disabled access. This meant my rantings about little B & B's stopped. I honestly couldn't stand many more bad experiences, although recently this theory has been sorely challenged by an unexpectedly dreadful stay at a Travelodge in Manchester whilst I was working with artist Tanya Raabe on her latest project.

The difference now is I want to write about this project, and my work, just as much as I want to slate inaccessible hotels. I expect there will still be the occasional hotel rant, but I'm lucky to be able to do that on a bigger stage at Disability Arts Online. This blog goes live in July 2010 and will be under my own name, so I might have to contain my ire a bit. Or not... I guess it's ok to have strong opinions, and life experience has taught me it's good to own them under your own name.

Here's the link to my new blog Disability Arts Online / Caroline Cardus' blog

If you're reading this because you used to like Fangworld, come over to DAO and read my new stuff. Or visit my website, www.carolinecardus.com to see how my experiences over the years have influenced the art that I make.

If you've just stumbled upon this, then check out the archives, or see the next post for a 'Best of Fangworld' list. I hope Fangworld will continue to exist even if I'm not a frequent contributor to it nowadays. It was fun to write, even though I didn't know much about writing, and a lot of my heart and soul is here.

Waste triumphs and traumas

2008-08-10T22:42:00.005+01:00

It's finally happened! I booked into a hotel that doesn't have a pedal bin in the accessible bathroom! (as in wheelchair user = mobility impairment + a pedal bin requires operating with the feet = a big mess round the bin, d'oh...)

This bin was wall mounted at a sympathetic height for a wheelchair user, right next to the sink, with a handle attached to the lid. I grant if you can't use your hands either this would have been as much use as a chocolate teapot, but then again, maybe you'd have a PA with you in that case. Anyhow. I gleefully chucked in my dental floss feeling the warm glow of satisfaction that someone somewhere in the hospitality industry had put two and two together. How thoughtful.

Unfortunately, the design of the toilet bowl was rather too thoughtful. Maybe you've seen a design like it if you've been to Germany - I first encountered one there when I was on the school German exchange. The toilet bowl is mainly a flat shelf, with just a small hole toward the front of the bowl into which everything gets flushed. The idea is that you 'do your business' and then get up to inspect whatever lands on the shelf. It's the kind of thing the repressed English don't do enough of, but more conscientious nations may do as a matter of course.

You might say it's logical to be concerned about bowel health, but the thing is, I don't need a special toilet pan to show me I've eaten rubbish. I know that already, because if rubbish goes in then even by the most rudimentary logic, that is what will come out.

But perhaps we in UK have had a rude enough introduction to this practice from a certain small-but-fierce Scottish lady, who makes silly money humiliating people by judging the content of their bottoms. Maybe it is for the greater good, but as much as I like the concept of being healthy inside and out I could not help but be flushed with shame when it came to my moment of truth.

I may be making too much of a fuss, but dear reader, I was not prepared. The fact is it's hard to eat healthily on the road. Poo charts be damned. I am traumatised. Thank goodness for the thoughtfully placed accessible height window, toward which I now wheel in haste to take in a few breaths of sweet, clean air...

The Lion Whisperer

2008-07-05T20:44:00.002+01:00

It was hot today so Mr F and I went on safari as you do (oh, alright, we went here).

It's a great day out, partly because it's all in-car and so a great leveller for mobility impaired crips, but mostly because no matter how many times you go you always see the animals doing something different.

Today we got mugged by parrots in the parrot-house, I told a lion he was lovely, whereupon he rolled over on his back and put all four paws in the air, watched the bears fight the wolves for some fish (Bears - 3, Wolves - 3), watched two monkeys fight a bitter and strategic battle for some cabbage leaves, and finally, after the cabbage war was won and all was peaceful, decided to set off for home - whereupon a monkey came from out of nowhere and parked itself on the bonnet of our car, staring in directly through the windscreen.

Fresh from charming the lion, I tried out my newly found powers of persuasion. "Wave to me, Monkey", I said in a Very Commanding Voice. It seemed to pay some attention and stared straight at us, (that's a good start, thinks I), but then the cheeky devil slowly lifts one leg very high and begins a long, leisurely (rather hypermobile) scratch of the backside.

There was no doubt about it, the beast was having a good ol' laugh at the newly claimed Fangian 'way with animals'. But all was not lost. The overconfident simian was so keen on giving a good show that it leaned over a little too far onto one skinny butt cheek, and, in a most ungainly manner, toppled straight off the bonnet... !

Note to self: next Rhematologist appointment - must try commanding her to wave at me.

A cutting remark

2008-06-17T17:39:00.005+01:00

So it was half term or something recently, and I forgot, and went into town. I usually plan in advance to avoid school holidays because the shopping centre gets full of sulky teenagers and crazy parents training toddlers to shop straight out of the pushchair. It's indoors too, which is a bonus when the teenies decide to have a temper tantrum, because then they don't get their little pink velour tracksuits muddy.

The thing that really gets my goat is there's a certain type of parent who, when they see somebody in a wheelchair 500 meters away, grasp their kid by the scruff of the neck and hauls them bodily away in the opposite direction. I don't mind this kind of thing if a kid is about to run out in front of me, but when they're miles away and the parents do it for no reason, they both end up looking at me like I'm a plague carrier. Which, I'll have you know, I am not.

I feel it's this kind of behaviour that teaches kids to grow up being afraid of disability, on account of a parent's over-reaction to a disabled person's presence by clawing them out of the way - when they were never in the way in the first place. With such behaviour from a parent, how can a kid can ever accept you're just another human being going about their daily business, with not the slightest intention of mowing anyone down out of sheer gleefulness that you have a cool wheelchair and they do not.

So. Where was I? Shopping centre. Half term holidays. Big mistake. I steeled myself for the inevitable signs of fear and loathing from parents, step-parents and assorted guardians.

Soon enough, a little kid about 10 feet away from me starts being dragged to one side, and notices I'm the reason why - whereupon she twists round to the man dragging her, points straight at me and shouts;

"Hey Dad! Look at that woman's lawnmower!"

Lawnmower?!

And then the Dad, still hauling, says;

"Yes, darling!"

So somebody somewhere is letting their kid grow up thinking we're all going round on ride-on lawnmowers. He just let her think my wheelchair was a ride on bloody lawnmower. Honestly, you couldn't make it up.

An Institutional Hotel

2008-01-21T11:56:00.002Z

Once again I'm going to regale you with a bad beat story about a rubbish hotel. But this one was a little different. This one, well, you had to see it too. Yes, I'm now so paranoid about hotel accommodation I take a camera on my travels. People often don't believe it when I tell them my bizarre accommodation stories. But it's worth remembering a lot of disabled people who travel experience this kind of thing on a regular basis.

It's a pity blogger isn't doing smell-o-vision yet, or maybe for your sake it's a blessing. Because when I arrived, the place gave off the unmistakable aroma of a badly run old people's home. This impression was further compounded by the way the receptionist shouted every word rather than spoke to me. I resisted the temptation to tell her my ears were not resident in my knees and shouted back as good as I got, taking the opportunity to let go of the mounting tension I felt - fearing I'd picked another dump to stay in.

My room had the same smell in it. I opened the small window and it began to clear, but when I opened the wardrobe, it hit again with full force. It was like the smell penetrating the entire building resided in the wardrobe in this room. Lo and behold, there was a bag of men's clothes in there!

I didn't like to think where the owner of the clothes was, but I was willing to bet he was no longer on the earthly plane. Feeling like I would be grateful to leave the earthly plane myself rather than spend a night in this place, I wracked my brain trying to think of somewhere else to go. But I was in a small seaside town, the weather was freezing, and I knew I was too tired to do anything other than have a bite to eat and go to sleep. I lay back on the bed, only to be greeted with the sight of a lamp hanging directly above the pillow that looked like it hadn't been dusted since, ooo, the early '50's.

Regretting my paranoia hadn't stretched to me packing a full cleaning kit in my luggage as well as a camera, I went down to the restaurant to have some dinner. My worst fears were confirmed when I wheeled into a near-deserted dinning room, apart from two elderly people, a man and a woman, bemoaning the choice on the menu. I can hardly bear to go into details about my food other than to say I was shocked that a hotel within 300 meters of the sea served me a sad-looking salad with some boil-in-the-bag fish that tasted as if it had been boiled in a sock. A sock belonging to the person whose clothes were currently hanging in the wardrobe upstairs. I fled, not caring that I'd told the waitress I was starving. I simply couldn't bear to order anything else for fear of wheeling screaming into the night. I decided I'd ring Mr Fang for some comforting words. My mobile was nearly dead, so I looked around for a socket to plug the charger into, whereupon I found an extension cord that probably pre-dated the dust on the lampshade...

"Eat the biscuits on the tray and calm down" said Mr Fang, between snorts of laughter. "Serves you right for trying to book a B&B. You should know by now that unless you use a big hotel chain you risk ending up somewhere like this!"
"I know!" I wailed, "but I wanted to be near the sea front! And the price was the same as a Travel Inn! B&B's who charge that might be a bit weird sometimes, but generally ok!"
"Remember Brighton" was all he would reply.

I sat on the bed and spent the rest of the evening eating the biscuits provided very, very slowly, pretending the first biscuit was the main course, and the second biscuit was dessert. Luckily the tray had some hot chocolate sachets, so I pretended these were additional courses - and very fine they tasted too compared to the fish served downstairs. I watched telly and tried to forget I was in an old people's home trying to pretend it was a hotel. It worked to some extent, and I got into bed ready to sleep with the knowledge that when I awoke it would be time to leave. It was bad, but what else could go wrong?

I was just drifting off when I became aware of an uncomfortable lump in the mattress. It felt like a mattress cover was rucked up underneath the bottom sheet. I tried shifting position, feeling warm and sleepy and not at all inclined to rise and start messing around with the sheets, but irritation began to overtake stupor, so in some despair I got up to sort it out. It wouldn't take a moment to pull any cover straight, then I could get on with being unconscious... ... but this hope was dashed in fine style by the presence of a large piece of wood that had been placed under the mattress! I was aghast! It wasn't even the length of the bed, which was why I'd felt a lump in the mattress! That was that - I was in a rage - which luckily provided the brute strength required to shift the thing further up the bed. I got back into bed and took several deep breaths and a large amount of sleeping pills. Mercifully, they worked.

In the morning I got up early (this not being part of my usual nature), dressed, ordered things from the menu unlikely to need much attention from the kitchen (i.e. toast, butter, jam, water), nodded sympathetically to the two individuals in the dining room who had been present the night before, and went to settle my bill. I was not in a good mood. Then to my utter dismay, the receptionist had decided to upgrade my room booking to dinner, bed and breakfast - the difference being an extra £15! This price covered a 3 course meal (which I had refused after tasting the fish).

"You must be joking!" I spluttered! "£15?! I barely had half of one course! Of boil in the bag fish! Which was badly cooked!" At this point, out of the corner of my eye I could see the two elderly people shuffle out of the dining room and settle themselves in the foyer.

"Alright" said the receptionist, who had suddenly understood wheelchair users didn't need to be shouted out, "I'll take 8% off the £15..."

"8%! I'm not paying more than a fiver for that disgraceful fish!" I yelled, aware that I was now completely losing it. "I could buy a whole box of it for that price! That's before we mention the state of the room! There were someone else's clothes in the wardrobe! Exposed wiring! A lump of wood in the bed! I took pictures, look!" I waved the camera at the receptionist, who was now looking pink and flustered.

She glanced at the camera, then up at the two elderly people who were now giving us their full attention, and muttering about food.
"I told you," said one. "Overpriced," said the other.

"I'll just get the manageress, if I can find her" the receptionist said, in a voice that suggested a long wait would be arranged for my inconvenience.
"Fine" I replied, a kind of psychotic calm setting over me "I'm very happy to wait."
She disappeared.

"Last night my food was awful too," said the elderly woman, and smiled weakly. "It always is, dear." said the man, nodding. "We live here, you know," said the woman mournfully "but they don't listen to us."

Before we could speak further, the manageress appeared, holding the menus from the night before. It was obvious from the frown on her face that not listening was a large part of her repertoire.

"I hear you're unhappy about the bill?" she asked, in a manner designed to show that in her opinion charging £15 for a bit of salad and a boil-in-the-bag fish was absolutely reasonable.

"I certainly am" I replied, in a voice designed to show I was absolutely not accepting it. "I'll offer £5 for the meal and no more. I didn't have 3 courses and I won't pay an extra £15 for it."

She took a deep breath in and looked at a snack menu. "We charge £5.50 for fish and salad on the snack menu, so I'll charge £5.50 to your bill instead. Happy now?"

"Not really" I retorted "The fact you were trying to charge me £15 in the first place is shocking. And I've just had a dreadful night in a bed with a lump of wood stuffed under the mattress, in a room with exposed wires, disgusting dusty lamps and a bag of smelly old clothes in my wardrobe! All for more that the price of a place where you can get fresh food for the price you're charging for boil-in-the-bag fish!"

This obviously being an invitation to start war, she started shouting at me about their large overheads...
"Don't pass them on to your customers then!"
Them being in business 60 years...
"Because you're running an old people's home! They can't leave!"
Nobody having any complaints...
(this is when the elderly couple decided to make themselves scarce)...
And last but not least - how hard it was to house disabled and elderly guests in an old building...
"Then don't!"

After we'd shouted all we could with neither willing to back down, she passed me the bill and the card debit machine in frosty silence, which I used, and passed back to her in equal frosty silence. I left, feeling glad that I had a choice to do so.

And the access? That's a whole other post, I'm afraid.

The Assertive Method

2008-01-17T14:38:00.000Z

Someone posted this to me recently in response to a post I wrote on a support group messageboard. I'm not going to blog in detail about the issue at the moment, but the title of my post 'At the end of my tether and avoiding the physiotherapist - help' pretty much says it all. Many disabled people can feel helpless and angry at some point when using services that are designed to support them - but may feel things are going wrong.

Although I do regard myself as reasonably articulate, there are times when anyone, no matter how confident, can suddenly feel a situation they're in is 'out of control'. Then sometimes it can be hard not be respond emotionally. Pouring it out might feel like the best way to demonstrate your distress at events, but it might not be the best way of getting your point of view across. In cases of emergency, try;

The Assertive Method

The assertive method was developed to its present state as part of the women’s movement, but is more generally effective for anyone. It provides a way to get what is wanted or needed without resorting to methods that generate strong negative reactions. It doesn't always work, but it tends to be very effective. The assertive message means more than simply standing up for yourself; it consists of four parts, preferably delivered in one short sentence each. The content should be:

1. This is the situation.
2. This is how I feel about it.
3. This is what I want you to do.
4. What do you think?

Then say ABSOLUTELY NOTHING until the other has completely run down. The lingering moment of silence at the end can be very compelling; use it.

If you get what you want, great. If you get an acceptable alternative, give it a try, saying something like "That seems like a reasonable way to start, I'm willing to try it." If the response is very unclear, ask for further explanation. If you get neither what you want nor an acceptable alternative, DO NOT ARGUE WITH ANYTHING THAT HAS BEEN SAID, simply say, "I understand, but [this is what I want you to do]." Continue to repeat steps 3 and 4 indefinitely. If it seems that the person with whom you are talking has lost track of parts 1 or 2, it is ok to restate those.

Sometimes it may help to check understanding. In that case, saying "Am I explaining myself?” is less confrontational than “Do you understand?” and less likely to put the other on the defensive.

The variant for refusal would involve repeating, "No, I won't do that, it will (e.g. hurt me)" followed by "I understand, but I won't do that, it will (e.g. hurt me.)"

1st Disability Dilemma of the Year

2008-01-05T10:53:00.000Z

There's mystery meat dog food on my kitchen ceiling.

How do I get it off?

It's really horrible dog food too. Not food for horrible dogs, horrible food. The vet gave it to us for our poor dog with a sore ear who's just been sedated so he could have his ear cleaned.

Last night when he got home the poor chap didn't know what planet he was on. He stood at the door for no good reason, gently swaying, ears flat, nose pressed against the frame. The vet had thoroughly washed his ear so on one side of his head his fur was all raggedy. It looked like he was using his nose to support his whole body weight. If you've ever seen the zombie flick Dawn of the Dead, you'll remember the hoards of zombies quietly standing outside the shopping mall, unresponsive until they saw something that caught their attention. Last night poor dog was a dog zombie. If we ever fall prey to a Dawn-of-the-Dead type virus out here in the sticks, at least I'll know when the dog's got it.

Just like people who've had a general anesthetic, dogs need to be looked after, kept warm, fed bland food, and be gently indulged when they do silly things. We have four cans of 'post-operative' dog food for poor dog's special recovery diet. When I was a child, after you got your bewildered animal home you didn't get special post recovery food. We just used to give our animals a bit of mashed potato or some rice and a bit of boiled chicken. But what the hell, it's Petplan's money, not mine.

When I opened the can I was hoping the goo inside would slide out satisfyingly like in the old Petigree Chum adverts - all slick and glistening with the lines of the tin can embossed on the side.

I gave the can a little shake. Nothing happened. I shook harder. Nothing. There's a vaccuum between the sides of the can and the meat, I thought to myself. One stick of a spoon will have it out. But when I stuck the spoon in there was no movement and no sign of the wet slurpy noise you get when releasing smelly gelatinous mystery meat from a tin can. The stuff was dense and evil-smelling, and it was at that point I knew I'd have to dig it out.

'This looks disgusting,' I said to poor dog, who looked up at me mournfully, 'maybe you'd be better off with a few biscuits in thin gravy?' But with a very subtle change in expression, the look on poor dog's face reminded me that when something is disgusting dogs like it all the more, so because I was indulging him with his lopsided ear and matted fur, I kept on digging. It was hard work watching me so in the meantime he lay down for a little sleep. I made the best of it but the stuff stuck to everything - the spoon, the sides of the can, my fingers, the kitchen counter. But the stink of it made poor dog look optimistic and a bit less lopsided so I let him gorge on it whilst I set about scraping it all off the places it shouldn't be.

Then because I am still under the illusion that recycling the few things our council is saying it can manage to recycle will actually save the planet, and to try and compensate for the large carbon footprint I generate because I'm a gadget-dependent cripple, I decided to try washing out the can. Big mistake. One of our taps shoots water out at tremendous speed. The jet of water shot into the can and out again at great speed, going ever upward and taking the remains of the mystery meat with it. I suppose I was lucky it missed my face.

But that's how it got onto the ceiling. How I'm going to get it off before Mr Fang sees it or poor dog acquires the power of flight is tomorrow's adventure.

Peeking out from under the covers

2008-01-03T12:04:00.000Z

Is it over? Has everyone gone? Didn't it go quick?

Mr F is back at work after the holidays and I am here in the company of a mournful looking dog with a sore ear.

Happy New Year. No promises, no resolutions.

However, I intend, somewhat cautiously, to be more chilled out this year.

For the second year in a row we had a family bereavement, on top of a monstrous workload, and I'm determined nobody is going to die or be overworked (especially not me) this year.

That's a good start, innit?

Not Only, But Also, on New Year's Eve the wheelchair service rang to say I was top of the list for an indoor outdoor wheelchair. I'm pleased of course, (again, with some caution) but a little miffed too, because I just answered the new question on my profile rather succinctly...

Complications and the Spirit of Cripmas

2007-12-20T10:14:00.000Z

So, am back from my op, and guess what? I had complications. Like bone spurs, which have now been removed. Another reason I haven't been able to do any kneeling poses in yoga. Or use my knee joint. Much. I thought was having keyhole surgery, and instead I have incisions and keyhole scars galore. Get a pen and I'm a wheeling noughts and crosses board.

On a slightly surreal note, pantomime season has arrived early in Fangworld. I saw my horrible ex-rhematologist getting told off by her husband in John Lewis. ("For goodness sake! I've told you before! Can't you make up your mind?!" "Yes I can!" "NO, you can't!!!" ).

It's official folks - I have been visited by the true spirit of Cripmas!

Auto email responses for crips - Part II

2007-11-05T12:40:00.001Z

Or...

"It's operation time again, hooray! From (date) to (date) I will be selflessly submitting my bod for a little more medical experimentation. This means I won't be replying to your message for a few weeks but don't think it's because I don't care... although to be honest, I won't care until the painkillers have worn off. I'll be sitting in my living room with my feet up, comfort eating and watching The Clangers and The Hair Bear Bunch on DVD. Hope you're having a nice time at work. Will write soon...
XXX"

Auto email responses for crips - Part I

2007-11-05T12:34:00.000Z

You know how it is when you tell people you're going to have an operation when you're disabled - they think you might be going to snuff it (hopefully not) or get all over-concerned. I'm not fond of people fussing so I want to write an informal auto response for my incoming email messages. I have a 'proper formal' one for some work contacts, but have a lot of friends who are also colleagues, who may appreciate a little crip-related humour. It needs to be something a bit tongue-in-cheek to diffuse any anxious reactions. This is what I've thought of so far...

"I will be on medical leave from (date) to (date). Occasionally I may limp pitifully to the computer in my dressing gown to reply to any undemanding e-mails. If you have sent a demanding e-mail that requires some thought, I may just go back to bed without replying. Please don't be offended if I don't reply, you wouldn't have got much sense out of me anyway. Body and mind will be operating at somewhat near normal capacity from (date) November."

Whaddya think? I expect I'll post up a few more until I have to leave for the hospital. Somehow it's easier seeing them written up somewhere. Argh, etc.

Pinning it down...

2007-11-03T22:14:00.000Z

I'm in my final stages of preparation to go into hospital this week for an operation. Just mulling over what’s in store for me over the next few weeks based on previous experience. S'not a biggie this time though - just keyhole surgery in my knee joint to (and these are not technical terms as far as I know) wash 'debris' out of the joint, and somehow, with radio waves if I remember correctly, debride (or smooth) the internal surfaces of the joint. Oh, and I'm having a pin removed from my shin too. Well, I say pin...

This I didn't know for the past 8 years or so. I'd had some mega-constructive surgery 9 years ago and part of this surgery involved taking a bone graft from the front of my tibia and pinning it at the top to make a more stable knee joint. According to my hospital bill at the time (courtesy of Mr F's company I was able to go private) the guy also remodelled my femur - although according to the latest surgeon, the femur still looked suspiciously odd. I dunno if maybe it just grew back into it's freaky-shaped self over time, but whatever, the latest set of x-rays showed it distinctly unmodelled - and I know I've rambled a bit here, but I was coming back to it, honest - the other things the x-rays showed was the pin.

Now I'd been told this was a teeny-weeny ickle pin holding an itsy bitsy bit of bone on top of the tibia - but it wasn't. It was actually a dirty great fuckin' nail. Yes, a nail! With a rounded head. If you do any DIY at all, you'll know that round headed items tend not to fit smoothly on to flat surfaces, which explains why I haven't been able to do any kneeling poses in yoga for the past few years.

I'm kinda in that position many crips despair of, when you submit yourself to more surgery and more 'opinion' from someone who doesn't live with your body on a day-to-day basis. But I gotta give this guy some credit, he knows the practical implications of my bone structure and can explain back to me exactly what trouble I have with the way my joints move. So if he can look at an x-ray and explain my experiences from walking to age 37 (one of his little sound bites - 'your tibia and femur are like two ice cubes sitting on top of one another and your patella has drifted miles away' - cute, eh?) then I'm happy to give it a chance. Also, music to my ears, he doesn't want to go in and chop everything up again and be a big experimental hero and 'fix' me once and for all.

(Beware, if any doctor starts saying those kinds of things to you, wheel or run or hop like hell away to somebody else and get a second opinion before submitting to a 'fixer'. He hasn't given me any of that 'cure' bullshit. Just that he'll take look and have a think and nothing else until we've talked about it, because he wants to be 'conservative' about things).

That leaves me free to worry about mundane stuff that is incredibly important for my peace of mind over the next few weeks. Like, do I have any decent big 'hospital supersize' knickers? Should I buy more mature looking pyjamas that don't have pictures of Eyore or Little Miss Naughty on them? Should I shave my legs (less pain but short term result) or epilate them? (more pain but smoother for longer). Don't wanna be stubbly in physiotherapy. Does my swimming costume still fit? How am I gonna spend my time during recovery? I'm sick of playing Tetris on my old Gameboy colour and I finished Pokemon years ago. Reading? Are there any books in the house I haven't read? Is there enough comfort food in the house? How do I get all the dog fur off my dressing gown?

It's all-important stuff. And you may laugh but after a fair few operations, my way of not feeling like total shite is to plan to have something nice (i.e., sans Disney characters) to wear, to not be stuck in bed looking at a pair of hairy legs for weeks, to have something to do to pass the time, and maybe manage to look like I haven't just lost my lunch when people come to see me. And ban all cameras. Seriously.

This last bit is pure vanity, but the requirement for visitors to check their cameras at the bedroom door comes from a family ritual I was regularly subjected to in childhood. Hospital became a regular feature in my life from the age of 12 onwards. Maybe to cheer me up, with the best of intentions, Dad insisted on documenting the whole thing each time. Maybe he was trying to make me feel 'special' in the nicest sense of the word, but the trouble with being in hospital is you're usually looking far from your best. The last thing you want even, if you're a tomboy-ish sort of child, is a picture of yourself looking up in misery from the sick bowl. On one occasion I'm sure a photograph of me on the ward was circulated in the family Christmas letter. Oh yes. My Dad loved photography - and there's boxes full of incriminating scrapbooks of my nerdy crippy childhood to prove it in the loft.

Another fetching shot shows what to expect if you've been in plaster for a long period of time. Not even a supermodel could make this look photogenic - the muscles of your plastered limb waste away, while comically in contrast the other limbs stay the right size. In summer if you've tanned, chances are they'll be a very different colour as well. At the time I was just old enough to need to start shaving my legs. I looked on in disbelief as the plaster cast came off to show a horror of a white, wasted leg looking like it belonged to an underfed werewolf, covered in long dark hairs. 'Blimey, look at that' said Dad, in his element, snapping away - managing to capture both my mother and the doctors smirking in the background at the horrified look on my face...

So. Dignity, dignity, dignity all the way. No photos.

(Except for the part where - with some persuasion from Mr F 'cos I'm not sure what to do with it - I've decided to ask the surgeon to save the pin he's removing from my shin. It's big. It's ugly. And I'm determined to get some good photos of it before leaving it in the past where it belongs!)

Breaking the law, breaking the law

2007-10-26T00:54:00.000+01:00

Ages ago I was watching one of those crappy 'Top 100 Worst Videos of All Time' programmes. You know the ones, they're on at the weekend, when you've decided not to go anywhere and are feeling thoroughly shite for whatever reason.

Usually you don't hate yourself enough to sit through that kind of carcrash rehash, but after scoffing cheap takeaway food that has given you uncomfortable wind and not yet having drunk enough alcohol to stupefy you into sleep, you channel hop onto something your sober self would never entertain, like the 'Top 100 Worst Videos of All Time', miserable in your cheap gluttony, and stay there.

The presenter was slagging off this video (Breaking the Law by Judas Priest) where the band break into a bank using the explosive power of, um, their guitars (cynical cough). They make it to the safe, where the lead singer bends some woefully flimsy bars apart only to find - a copy of their video! All that effort to invent a new and innovative use for the electric guitar only to gain a Judas Priest video. Talk about being robbed.

Back in Fangworld, meanwhile, I suppose I need to make some flimsy excuse as to why I've been neglecting my blog lately (ok, all year). I haven't been at home much to watch crap telly because I have power, the power of an electric chair! It's not as powerful as an electric guitar, mind, and I certainly can't rob any banks with it, as the top speed is only 2 mph. In case you're wondering, that's about senior shuffling speed. So I have been working, working away, not cooking cheese straws as my New Year's resolution promised. But the hotels I usually stay in cook such awful breadcrumb coated food that I prefer to buy my dinner at Marks and Spencers instead. They make pretty decent cheese straws, so I've given up on that one. Zooming in and out of M&S food halls all over the south east, in my little powerchair.

The chair is little because its an 'indoor only' chair. Whereupon we come to the snag. There has to be a snag, doesn't there, because being disabled, at the mercy of the support services, them letting me have something I actually NEED, to do with what I ACTUALLY NEED TO DO, would be only COMMON SENSE, and as you've probably gathered if you've read my blog before, my local services don't have any common sense.

To this end, earlier on in the year, I found myself staring at freedom, in the form of the new wheelchair that had just been delivered, and a form. A form I had to sign saying I could only take possession of the new wheelchair, that my consultant had said I needed all the time, if only I promise-promised cross-my-heart-and-hope-to-die that I wouldn't do the following;

Use the wheelchair in my (fully ramped and wheelchair accessible) conservatory

Use the wheelchair in my (fully ramped and wheelchair accessible) back garden

Use the wheelchair to go to my (fully ramped and wheelchair accessible) front garden, not even to go to just the end of my front garden path where the fish and chip van parks on a Friday night. Shit, eh?

And worst of all

Use the wheelchair outside, in my (fully ramped and wheelchair accessible) vehicle, to go ANYWHERE that wasn't my bedroom, bathroom, living room and hallway.

So that's my life enabled then - NOT. Apparently, apparently it's something to do with the fact that although I am educated to degree standard, have no cognitive impairment, sight impairment or any other impairment apart from NOT BEING ABLE TO WALK ANYWHERE, I shouldn't use the VERY THING I NEED TO HELP ME BECAUSE I CAN'T WALK ANYWHERE, in case I cause myself harm. Because, why? Why? Would crawling or falling over be so much better then? Oh no, it is - the technician told me with a perfectly straight face - for my own safety.

Apparently some crip (who luckily for them is dead now because if they weren't I'd be havin' a word...), once drove their NHS funded wheelchair into a pond. And died. Apparently according to the wheelchair service. On that basis, the wheelchair service got sued and blamed for this person's untimely death. (They must have spent less on their legal defence than the price of a pressure relief cushion).

Can you see a flaw in this anywhere? Who'd have thunk the pond diving cripple made a bad judgement of his or her own? Do they ever think that sometimes we think for ourselves? (Ok, so deciding you're going to go swimming in your garden pond wasn't a great decision, but...) Oh no! It was blamed on the wheelchair service, something about their misinforming this person that their new wheelchair could swim, apparently, with the result that they have decided none of the other disabled people in the whole of the country can be trusted to use their wheelchair properly - i.e. at all. So now to cover themselves, apparently they are forced to make sure when people who have been waiting years for a wheelchair finally get one, that they have to basically not use it, in case they die and someone blames the wheelchair service - and here's the clincher - because if someone uses their chair wrongly and dies and the wheelchair service get sued again THE LEGAL BILLS WILL CLOSE THE ENTIRE WHEELCHAIR SERVICE IN THE UK DOWN FOR EVER AND ALL THE CRIPPLES IN THE LAND WILL HAVE TO GIVE BACK THEIR EQUIPMENT AND NEVER HAVE ANY HELP AT ALL FROM THE WHEELCHAIR SERVICE FROM NOW UNTIL THE END OF TIME, ALL BECAUSE OF THE SELFISHNESS AND WILFULLNESS OF ONE STUPID CRIPPLE WHO WOULDN'T FOLLOW THE RULES THAT WERE ONLY THERE FOR THEIR OWN SAFETY.

"Now Ms Fang, you wouldn't want that to happen, would you?"

Can you smell something?

Honestly. I couldn't make this stuff up. If I ever had a disabled child, I would tell them this tale if I wanted to give them nightmares. But this is what the technician told me on that day, a day that should have been full of new horizons. Sign the form and promise. Sign it now, or we'll put it in the van and take it away again and give it to somebody else.

I did seriously think about crying and saying no and stamping my foot, but I didn't, because this year I have also been diagnosed with osteoporosis (Yeah. I told you I was feeling shite). I signed the goddamn form. It felt like a little piece of my soul had been torn off. The technicians got in the van and drove away, leaving me with the phone number of the manufacturer on a badly photocopied instruction booklet. I felt so crap about giving in I stayed at home and did as I was told, being miserable about it and signing the form, watching crap television programs about metalheads robbing banks by the power of their guitars. I read the manual and it told me all the usual stuff – don't run the battery down, don't modify it without help from your wheelchair technician, and above all else, don't try and swim in your new powerchair. Funnily enough the booklet seemed to suggest that as long as you didn't tax the chair's capabilities, it could be used outside. And safely transported in the kind of vehicle I happen to own. A couple of calls to the manufacturer confirmed that although speed wise you could be overtaken in the street by an arthritic granny the battery had a range of 7.5 miles.

That night the fish and chip van arrived at its usual time and I boldly went to the end of my front pathway to get some cod and chips. Damn, it was so nice to be outside! It occurred to me that owing to some ridiculous boundary rule the wheelchair service who looks after me is not in the county I live in, but one next door. And that the people who come out to visit me often say things like 'You live very far away, it's taken me ages to get here' and 'I don't usually come out this way apart from visiting you'. So that night, I ate the chips my new chair had enabled to fetch from a few feet outside my house, and pondered this.

Next time I was offered some work in a town far away from home, I took a deep breath and stashed the powerchair in my van instead of taking the manual wheelchair. Words can hardly describe just how well I felt after completing my work - I still had energy to boldly go! I went to Marks and Spencers and bought some cheese straws and a packet of luxury biscuits. Like the cod and chips, they tasted particularly wonderful. So the next night I did it again. And the night after that. And the next, and the next. Being independent is quite more-ish, isn’t it?

When I got home, the first thing I did was drive the chair into my conservatory. No Pythonesque hand came down from the heavens to smite me. Next day I went into town. This was the day I found out that at top speed I could be overtaken by pensioners (they were too busy deciding what to buy in the M&S food section to try overtaking me there) but to be honest, I didn't care - and I still don't care now. I just boldly go and to hell with the consequences. What is the world coming to when it's taken me 6 years of struggle just to get around easily again? Should I feel guilty that I'm enabled to sneak around doing such subversive activities like going into my conservatory, down the front path to the fish and chip van, shopping and holding down a job? Am I hurting anyone by carefully going where I can? Even if I was to get caught tomorrow and made to hand over the powerchair for my errant behaviour, I can honestly stay that to just do these things for a little while has been worth it. It feels like I've stolen the gold, and I'm telling you, it feels a helluva lot more valuable than a lousy Judas Priest video.

Don't look down?

2007-04-11T13:02:00.000+01:00

I went to a posh arts do the other week. I had a badge with my name on it, and underneath my name it said 'Artist'. This is because its what I do for a living. If people worked for an organisation - for a living - they had either their job title and the organisation's name on their badge, or if they didn't have a particular title, just the organisation's name. The director's badges said 'Director'.
Well, you would, wouldn't you?

You knew you were at an important do because the food included things like sun-dried tomatos and a cheese whose name I can't spell. I ate it anyway.

Talking of cheese, there was one encounter during an otherwise pleasant evening that made me feel rather fed up.

During 'networking' time - between arrival and the main event, it's fairly common to approach someone and get chatting. I was chatting to a someone I knew, someone switched on to disability arts, arts and disability and all that jazz, when some guy came up and introduced himself. But only to her. At the earliest opportunity, she introduced him to me. He said;

"Hello."

And looked up.

And picked up where he left off with her.

It doesn't help at these things everybody else is standing up and I'm sitting down. Looking up makes my neck sore. It means eye level is more difficult to establish in close up situations, especially if the standing person trying to network with the standing person you are networking with doesn't seem to ever look down, in your direction.

I wondered if he had a sore neck too.

My friend decided to try drawing me into the conversation again. She told him we'd worked together and that I was an artist.

It got me a look down. He said;

"Are you trained to work as an artist?"

I said

"Yes."

Emphatically.

He looked up again.

And that was pretty much that.

It seems to me disabled people still have a long journey ahead of them in the arts when some people clearly don't think we are capable of working at a professional level. I'd like people to think if they met me at a function where we all have our job titles on our badges, that they might assume that when mine says 'artist', its not a hobby. It's as bad as bloody Access to Work.

I memorised the name on his badge for future reference. Maybe one day I'll get to 'not look down' at him.

(The name would have stuck, too, if I hadn't stayed up so late observing a bet on who was going to leave the bar first to go to bed!!! You know who you are!)

Happy New Year

2007-01-02T14:58:00.000Z

People are asking me the old chestnut, what are your new year resolutions?

I try not to set the bar too high when it comes to resolutions. Therefore, I only allow one simple resolution and consign everything else as intentions. It's a non-pressure system that works beautifully by not putting pressure on you, the resolver.

Intentions, aspirations, ambitions, whatever you want to call them, have no set timescale - and if they don't happen, one may be bumped up to resolution status if you're bothered enough by not getting round to it this year.

As an indender, I am free to intend in my own time, which may or may not come to pass within 365 days - no deadline by which guilt will be inflicted if the intention has not come to pass, with the additional knowledge that I am capable of dealing with one set resolution, and in that rests hope.

And this year hope will be fostered in the bountiful form of cheese straws. Yep. Cheese straws. My one resolution for this year is to learn how to make cheese straws. Because cheese straws are something to aspire to. They seem relatively simple to do, and well, they're nice, aren't they? Cheese straws may play no profound part in my life or the workings of the universe, but they will surely grease the wheels by making people who are presented with them happy in some small degree. And if that isn't hope, what is?

There's no sugar in 'em either, and this year one of my lesser aspirations is to cut down on sugar. Not completely, obviously, because biscuits generally contain sugar and a world without biscuits is unthinkable, more so than a world without cheese - it's just that biscuits will not be my main focus this year because I intend to shed a teensy bit of weight. Intend, though. D'you see what I'm doing here? No pressure. More haste, less speed, an' all that.

Other intentions are as follows; go out of the house to do something nice at least once a week even if unwell, travel to London and see more exhibitions, get out of the habit of saying "Excellent!" to everything all the time, open and file my bank statements in a timely manner, contact people more often and generally be more sociable, buy more clothes that actually match my disproportionate shoe collection, experiment more with hair dye, nail my Access to Work application and actually start a big art project I have been dreaming of for the past couple of years.

All scary stuff, of course.

Last year my resolution was to moisturise my neck. I got the idea after seeing a program about Margaret Thatcher having a portrait painted. I'm not, nor was ever a Thatcherite, but when Maggie turned round and said "One of my few regrets is not moisturising my neck, look how wrinkly it is in the portrait" I thought, hmm, that'll do, I'll have a crack at that... One year on, thanks to the former Tory prime minister, I'm still moisturising.

So, with a smooth neck - and cheese straws - under my belt, surely nothing will seem impossible in the coming year? Nothing!

Happy New year everybody.

Naked Truth

2006-10-27T12:59:00.000+01:00

I now have a frock for this black tie do on Saturday (now past - I was to knackered to finish this draft in time...). I only went in one shop too. 'Smug' monthly*.

This shop has very helpful assistants that usually intimidate me (it's a bit posher than I'm used to), so I spend my time in there browsing whilst at the same time trying to avoid the assistants, with a sort of stealth fleeing behind rails of clothes every time one moves too close. A good thing about them having hard floors is that I can glide out of the way quite quickly. I hate people zooming in on me if it's because I'm in a wheelchair, with that automatic assumption (some of them have) that I can't choose a dress on my own. Because choosing a dress is nothing to do with needing to use a wheelchair. Is it?

But yesterday I was so godamn tired I didn't flee. Within twenty seconds someone was asking me if I needed any help. "Yes please," I said. "I need a dress for a black tie occasion. I don't mind if it's strappy but I'll need something like a bolero or wrap that goes with it to cover a tattoo. Please just show me what you've got that I might be able to get away with?"

She smoothly steered me over to the long dresses, which was like being in a kind of lush forest of silk and lace. Long dresses on racks tower above you in a chair and the world feels quite imposing and alien. I did my best 'Lou and Andy' and said "I want that one. And I want that one..." and so on. There were some upstairs too, so with this lady trailing lace and satin dresses, we went up in the lift. I was really grateful because all she talked about was dresses - what they had in, what went with what, and so on. But I was still on guard for the conversation to stray into those awkward 'what's-your-disability?' areas at any time. To her credit, it didn't and she left me in the hands the upstairs assistant who offered me the bridal changing room (i.e. big enough for me, the chair and a bit of falling over room) to try on dresses collected thus far. I was so bloody tired I was determined to buy something from this shop rather than push myself round the shopping centre only to struggle with dressing acrobatics in ever smaller changing rooms that flash my arse through the curtain because it won't close properly over a wheelchair wheel.

The dress I liked best looked dreadful on. I do wish Trinny and Susannah would do wheelchair users on their fashion makeover programmes - I kind of have a grasp of what some of the rules might be, but I usually dress for comfort or getting my hands dirty - and now, the artful camouflage of dog hairs. Black tie is not usually on my social calendar. With this sort of thing, memories of other 'do's' come flooding back, especially the one with the vicar.

I was also trying to buy something that would be suitable for various smart occasions, not just a glamorous evening do, in case another doesn't come along for a long time. But all I was left with was a black, floor length halterneck with velvet ties and a lace/satin overlay. This had to be the one, or I was doomed to drag myself across the shopping centre - and it was. If I'm ever in a blockbusting film it might get another airing on the red carpet. It was lush. Too posh really, but I decided it was also roomy enough to allow me to eat more malteasers, hence the chances of it being used once in a while weren't too bad. Mission accomplished. Time to climb out of it, pay and leave.

Just as I was at my most vunerable, naked, eyeing my stomach and regretting not doing all my core stabilisation exercises, a little voice floated over the top of the curtain.

"I might have to be in a wheelchair one day" it said. "I've got rhematoid arthritis."

I sucked in my stomach. And said,

"That's nice. You'll like being in a wheelchair once you get used to it."

And paid.

And went home to bed.

*It's a phrase Mr F and I use to designate just how smug we are feeling based on the imaginary 'Smug' magazine. So 'Smug' quarterly isn't very smug compared to say, 'Smug' weekly, which is really quite smug, but not quite as smug as 'Smug Annual', which being a yearly roundup of all the best of Smug, is very very smug indeed.

Underwhelmed

2006-10-26T12:37:00.000+01:00

I have to go and buy a frock today. For a black tie do. I'm not a black tie do sort of person. And I hurt. And it's raining. And I've been putting it off because I'm too tired for this sort of thing.

Damn.

Not least because I know fate will direct me to any number of excellent things that I will not be able to purchase because I only have money for a frock.

But really I am hankering after getting a silly coloured hat.

Really Beyond Boundaries?

2006-10-23T15:24:00.000+01:00

I've just watched the last episode of Beyond Boundaries, the series following a bunch of disabled people trekking accross Africa to reach the Skeleton Coast.

If you follow that link you'll find plenty to read and some interesting conversations about it on the messageboards. I'm not intending to write about it in depth here as there's plenty of interesting threads that go further there than I could, but one thing did strike me about the last episode.

The group are going through the sand dunes and begin to disagree with their guide, Ken. One the last day, Ken steps down and leaves it to them to naviagate after having been overruled the day before. Comments about Tim being a self-appointed leader, not an elected one, were beside the point here as far as I was concerned because no-one seemed to ask for Ken to return and as far as the footage shows (a well appointed ha! will escape any cynical reader here) Ken appears to hang back and let them get on with it. And he seemed happy (ha! again, etc) to do so in the main.

And get on with it they do. In typical crip fashion, they do it a bit differently than he would have done. Maybe that was down to expertise - or the point made the day before that for many the going was much easier in some places. Maybe that was an essential priority for the group that Ken couldn't ever have really comprehended. And maybe they cocked it right up and were lucky to get to the coast, but I couldn't help thinking this little revolution went further than anything else to gel them as a team, rather than staying under a leader who was, for all his good points, not 'part' of the group, who did not - who could not - share in their insights.

For me, that was a significant boundary broken. Not just for the crips but for the guide too. No more direction from you Ken, they seemed to be saying. We'll take it from here, mate, cheers all the same. There's aspects of this terrain we need to deal with in our own way.

Wahey! Now we're cooking with gas, Beyond Boundaries!

Because if you're disabled, how many people stand back and let you get on with it? How many times do you tell someone to get lost and get on with it in your own way despite their misgivings?

Not many people? Not nearly enough of the time?

Now thats a real boundary gone beyond if ya ask me. It's the power play between those who are the 'cans' and whose who are percieved as the 'can'ts'.

If they want to evolve the series for next time as far as I'm concerned, they'll need to get the next lot more actively involved in making the decisions - not following a leader. At least working alongside one. Why not? Why not train people to navigate next time, for example?

Don't think I'm being recklessly anti-AB here. That's not the point. The point is you can take people with whatever disabilities and put them in front of all sorts of dangers, but if they've got a guide, a bloke with a gun, a doctor, a helicopter on standby in case someone gets a pressure sore (soz Heidi, but..), whatever, then they've got a safety net which is essentially a group of people who aren't disabled to bail them out. In a greater sense thats the part of the series that seems old-fashioned and stale to me as a disabled audience member, when it's telling us it's all risky and groundbreaking. Woohoo. What's that saying again about art reflecting society?

Obviously we don't to pay our licence fee to see the BBC feed crips to hyenas or die of heatstroke but I'd have thought more control now a group have been seen to take it, would be an attractive bar for the production team to reach next time.

I know sometimes being independent means knowing when to ask for help - so by all means don't chuck out the safety net, but I feel there's a degree of boundary that goes beyond deserts and rapid waters that warrants further exploration, hell, exploitation, here.

Top Ten Unexpected Benefits of a Connective Tissue Disorder

2006-10-23T12:19:00.000+01:00

Thought I'd start the week on a positive note. Or something. So.

Top Ten Unexpected Benefits of a Connective Tissue Disorder

1. Never needing help to apply fake tan to that bit between your shoulders

2. Really having baby soft skin

3. Feeling superior at yoga classes even though you only started them last week

4. A real chance of being able to run away and join the circus

5. Earning money by doing contortionist tricks on TV 'home video' shows

6. Silencing doctors who say, 'You can't do that' by saying 'Oh yeah? Watch this...'

7. Telling people it really is your parent's fault

8. Unfair advantages in Hide-and-Seek, namely the ability to squeeze into the smallest spaces

9. The game of 'Twister' holds no fears for you

10. Reducing dislocated joints in front of an audience cements your 'hard-as nails' reputation

I can't decide whether or not to post it on the support group messageboard... tis a rather serious place... don't wanna get banned or nuffink...

The 'OUCH!' Podcast Must Be Saved!

2006-10-09T11:43:00.000+01:00

Do you listen to the Ouch! podcast?

No? Why not?
Yes? Have you signed the petition to keep it yet?

read the petition and vote now!

As you may have guessed, I'm a fan.

Is that a shotgun in your pocket or are you just pleased to see me?

2006-09-25T11:54:00.000+01:00

Please note; this happened a few weeks ago now and I have berated myself enough for the outcome! Thank you.

Recently my neighbours were alarmed to see I had an unexpected visitor. Upon knocking on their doors, he explained he was looking for me and had taken the trouble to go round the village to find out if anyone knew where I lived. Their alarm was mainly because he had a Landrover covered in stickers depicting shotguns, plastered with slogans like "We're the good ol' boys!" and "Come and shoot something with us!" etc. After he'd gone away, one of them (the only curmugeon on the block) admitted he'd thought I'd hired the guy to come and shoot them all so I could move some younger neighbours in. Not true.

This gentleman, far from coming to assist their exit from the world, had in fact called round to check I was still in it. This was because he was witnessed me doing something incredibly stupid on my trike, that ended with me, the wheelchair and the trike parting company in a rather spectacular way.

It's all the battery's fault. I got a new battery and needed to drive 1.5 miles on a smooth flat surface 4 or 5 times to get it up to full capacity. Instead of a quick burn round the block, the battery seems to prefer a more gentle pace of around 4mph during this procedure. There is a nice little road near our house that goes past sheep and cow fields which I decided it was the perfect route to kill 1.5 miles of distance - and nearly myself, as it turned out.

This road is single track only. Not much traffic, not least on a Sunday evening when the sun is setting and the livestock are settling down for the night. But where traffic does meet, there are few passing places so it nearly always involves a complicated manoevere between vehicles.

On the evening in question, I was trundling along, enjoying the sunset and reflecting on how much life had changed in the past year (where we used to live in a small town with neighbours-from-hell and housebound). In a cheery mood, I waved hellos to the sheep and cows and didn't notice the noise of an engine until it got quite close behind me. Damn. I was quite a way away from a passing place. Suddenly, although the driver hadn't done anything impatient like revved the engine or hooted the horn, I felt very 'in the way'. A wave of guilt swept over me - what did this person think of being held up by someone in wheelchair pottering along at 4 miles an hour? "Bloody hell, you're holding everybody up" said a voice in my head. I looked around for somewhere I could pull over so they could pass. A little further up the road off to the right was a track leading down to some pens for the livestock. I would turn off onto that track and let the vehicle pass, then turn back onto the road and continue my meandering pace.

Approaching it, I could see a downward slope that was coated with concrete with that knobbly non-slip surface texture for grip. If I turned right on to it from the road I would be at quite a sideways-down angle, which could be tricky. So I was careful. I slowed down and pulled gently to the right, stopping upright and shipshape on the track. There. No harm done. The vehicle pulled past. I gave it a confident wave. The sky was a beautiful deep red colour and it crossed my mind that this was a lovely time to come out riding and it would be a good idea to get some bike lights so people could see the trike in twilight.

The next bit happened in a matter of seconds. Releasing the brakes, the trike moved forward slowly - and one wheel left the ground. Owing to the steepness of the angle I decided to veer right and straight down, then make a left turn and get back up to the road head on to the slope to avoid coming unstuck. I accelerated to get myself out of trouble, but this was the worst thing I could have done. The left back wheel hit a big lump of concrete and for a moment I was on two wheels thinking I could recover, but then there was a bang and a crash, as I sought to control the front end by applying opposite lock to the left and the chair tipped right, then my bodyweight lost the battle and tipped forward and sideways, nudging the locking clip between chair and front end open - leaving me, the trike and the chair parting company, bouncing on the concrete before coming to a halt at the bottom! I remember the first impact on my right kneecap before a impromptu forward roll. I haven't done a forward roll since primary school.

Bugger!

I was lying in a little heap thinking "I'll know in a moment whether I've fractured my kneecap or not..." I'm nervous about falls on my knees owning to low bone density around that area. I was sure I'd landed squarely on it. Damn stupid idiot. I wiggled my toes. Ouch... but not too ouch. Not ready to move yet. I watched retreating red lights as the Landrover drove off down the road. Then they seemed to come to a halt. Was he stopping for me?

I didn't know if that was a good thing. After a fall I'd far rather be left to sort things out in my own time. I was pissed off with myself as well for taking a stupid risk. "Should have made him wait til you got to a proper passing place...." said the same spiteful voice in my head that had berated me for holding the guy up beforehand. I put my head back down on the concrete, remembering I had a mobile phone in my pocket. Thank God for Mr Fang nagging me to be responsible - I hadn't been too keen at first to be so diligent. The Landrover had definitely stopped. Time to look silly. Oh dear. You know how it goes, wobbly crip friends. A person got out and started to run towards the little pile of me and machinery.

If you're a crip that falls over regularly, don't you hate this bit? Once you've got used to those 'whoa - and down!' sort of events, the aftermath of stillness and floor can almost be... comforting. You're down, but still present. Once the floor has caught you there's nowhere else to fall. You hurt, but again, if part of your condition is getting hurt suddenly, there's a little piece of you that remains calm and separate from the 'Ows' and thinks, remarkably quickly, about practical things. 'Where's the phone?' 'Is an ambulance required?' Where's the nearest chair?' and 'How am I going to calm everybody down', often followed by 'How embarrasing!'

Wiggling my toes again and deciding I was ok to move, I looked up at the man now standing over me. Damage control mode.
"Thankyou, thankyou, I'm ok, don't worry, it was my fault, how stupid, I knew I shouldn't have turned off there..." I babbled, trying to put him at ease at the alarming sight of a wheelchair on its side, wheels idly spinning. Because it's such a cliche, isn't it? The deposed cripple, the wrecked chair.

It's the sort of thing you see in a crap film that stereotypes us and the few things people can imagine happening to us - after we've tried to destroy the world someone takes a swipe and we're on the ground, wheels spinning. For the audience it spells the end. So I feared what this guy was 'seeing' was not just some silly girl who'd taken a tumble, but the utter destruction of someone weird. And maybe that somehow it was his fault, because another thing people sometimes feel is unexplicable guilt if they see a crip get hurt when they're nearby (with the exception of some NHS nurses, y'know, the ones with brass balls who, from time to time during hospital stays have scolded me for having the sheer bloody cheek to fall over in front of them...).

So the guy helps me up. He's so stunned he just does what I ask of him - take the chair, turn it the right way up, grap that bit there, stick the brakes on, dock the trike, thank you very much, as you can see I'm on my feet now, so no harm done, and god, I'm just so, so embarrassed - and thank you. I might have a bruise tomorrow, but whatever. Please just get back in your car now and I'll follow you out of this lane, and for pete's sake don't tell anyone about this, because if my husband thinks I've done something reckless he'll worry about me, and I've learned my lesson now, so no harm done, eh? Ok? And thanks again. Goodbye. Yes, I'm ok. Honestly.

So he drives off, and I go home. After getting in and sitting down to prove there has been no big damage, I say meekly to Mr F "I had a little spill out there." He says "What?!" I say "Oh, I sort of slid out the chair when it went down a bank, but I'm ok, might have a bruise or two, but I coped, I'm fine, a man helped me up - and I had the phone thanks to you, so I'd have been alright..."

Mr F is no fool, so once he can see I fell but I'm ok, I tell him what happened. And I'm fine. "This time," he says. Yes. This time. Next time I'll be more careful. I sat down so casually when I got in but it was bloody hard going to get up and go to bed a couple of hours later.

The nest day, rescue man comes to check up I am ok and it turns out that somewhere beyond the one track road there is a shooting range that is his business, hence the rather, uh, 'dynamic' stickers on his Landrover. Curmudgeonly neighbour says to me he probably only came round to make sure I wasn't going to put in a claim for falling over near his Landrover on the track. I don't do that, I say. But shooting things sounds like a lot of fun.

I had 24 bruises in total. Impressive eh? Not for long. (Or for any EDS-er that wiggles more than a finger on a daily basis...). Mr F went paintballing the next weekend and beat me easily.

Good Things

2006-09-22T11:17:00.000+01:00

I haven't had time to post at length about dog training yet, but that's ok, because I've only had one session.

On other matters, I've been invited to a meeting next week. Access issues are usually a matter of course when you're working with other disabled people or organisations. The usual, "Do you have any access or dietary requirements" type e-mails go to and fro before these things and all the details are ironed out to ensure the meeting runs smoothly. I always make a point of being very clear about stuff like parking, level access for the wheelchair and so on. When it comes to the dietary requirements question, in hope and without fail, I always mention I have no special dietary requirements and I am able to eat almost, if not all types of biscuit.

It is disappointing to say the least when the host does not pick up on this, but today I received an e-mail which contained this text and so gladdened my heart

"I’ll make sure there are plenty of biscuits..."

This is a good sign. People who understand biscuits usually make good partners. I am very much looking forward to a new partnership with some true biscuit afficinados!

Second Dog Syndrome

2006-09-05T16:30:00.000+01:00

You know how it goes (if you've acquired a second dog).

You start to wonder where you left the lint rollers. The fur bunnies are growing in the corners of your house. There's furballs in your garden.

You wonder why he doesn't like mushrooms, apple cores and marmite, until you realise that was exclusive to first dog and not a general everydog thing.

You hear mysterious chewing sounds. You race to the vicinity of second dog. Second dog looks at you innocently. You know you'll find what he was chewing once he's finished chewing it, but until then there's nothing you can do.

You dig out an item of clothing you bought after first dog died and haven't worn since getting second dog. There is fur on it.

You remember how your house used to smell when it was dogless, but a big part of you doesn't care anymore.

Occasionally, second dog farts. Alarmed, you rush round the house in case it is More Than That, because you don't know each other well enough yet to be certain he just wouldn't.

Long silences make you suspicious. What's he up to?

Your best attempts to be furtive, spontaneous or use clever descriptive language for walks, feeding and playtimes fails miserably. Within a week second dog effortlessly knows what you are planning when.

Everything nice at 'tail height' has to be moved.

You wished you hadn't thrown out the 'designated spoon' when it comes to mixing up dog meat and biscuits.

You are grateful that cheese still appears to have universal power across the dog world to evoke rapt concentration.

Second dog falls asleep on your feet. You think 'Why did I wait so long to do this again?'

Keep calm

2006-08-30T16:54:00.000+01:00

For a long long time Mr F and I have wanted a dog.

Now a dog has arrived!

We knew if we became dog owners again it would have to be a carefully planned operation. It wouldn't be as simple as just picking up a puppy from somewhere and taking it home. I worried a lot about having a dog and being disabled. Could I walk it, control it, amuse it, look after it when I wasn't feeling well? Would it knock me over, struggle to get out of the front door, woof a lot when I needed to rest? Was it feasible to be a dog owner when I couldn't walk far and had daily pain and fatigue?

We were determined to make it possible. For years and years we'd longed for another dog, having had a German Shepherd before I was disabled. During his lifetime my mobility impairment had a big impact on my interaction with him and he never, in his old age, got socialised to me using a wheelchair (as much from our inexperience with it, as anything).

To add to this confusing change of circumstances, I didn't know how to be a disabled person at first (who does?) and all that it entails - sussing out living accomodation if it needs to change, getting the right access equipment, the job, the pain, fatigue, endurance and energy levels - just having a life again has taken me years to acomplish. With the move to the bungalow, and some stability in work, life has become easier. My head is in as much of the right place as it'll ever be. I'm pretty much resigned to knowing I'll never get everything right, 100% of the time. Still waiting for a better chair, but now as a powertrike owner I can go outside.

Now seemed to be as good a time as any to start thinking about having a dog again. So we started looking. I found a good training school. And a good vets. And some good accessible pet suppliers. But a dog? Nothing. No breeders I found locally had any puppies. Now we'd decided for sure, the newpapers had no GSD's for sale. I wanted to make sure we got the right dog, with a good temperament for training, as I'd found an organisation called Dog Aid who I hoped would help me train the dog above and beyond what a general class could do. Dog aid were great, very friendly and helpful. They sent me an application pack. But nobody knew where I could get a dog.

Then the universe provided. How we got him and why he's the right dog is another story for another day, as I'm overtired and having trouble thinking and writing clearly. In the build up to him coming to live with us, we were like two little kids, getting all excited and then telling each other to 'keep calm, keep calm' in high, breathless voices! In this blog I try to keep a focus on the side of my life that is affected by disability, so I really want to write about the things encountered as a woman becoming out as a dog owner again after becoming disabled. I can't promise there'll be no mushy stuff, but I'll try and make it incidental to the main points!

But now I have to go, because I've told him I need regular breaks today to pace myself through the fatigue - and am being prompted to stop by the sound of a ball being dropped repeatedly near the safety gate.

We've got a dog! Yay! (Keep calm).

Running away very slowly

2006-08-09T09:59:00.000+01:00

Mr Fang opened up the garden shed for the first time over the weekend. To begin with there was a rusty padlock on the door we couldn't budge, then when we snipped it off we realised a flagstone outside the door had risen - preventing the door being opened more than a crack. First glimpses of what seemed to be a very promising potting shed complete with a (possibly dodgy) power supply and built in storage were only visible through a 2cm gap in the door.

Which is why we didn't spot we had a wasp's nest.

In fact, I didn't even know what one looked like. When we opened the door and switched the light on, the first thing we said was 'Good grief, more exotic DIY' at the cable hanging from the ceiling. We were in awe of all the inbuilt storage, so immediately started planning what to do with all the new space. Then, I spotted a funny looking crepe bandage apparently stuck on a nail on the wall - but just before I could reach out and touch it, Mr Fang screamed 'OHJESUSBLOODYHELL!' and ran out of the shed as fast as his legs could carry him.

I, using my walking stick and being crap at running, stood there in alarm wondering what death or danger was about to befall me. By the time I'd maneuvered myself in the direction of the door with all the speed of an Olympic sloth, Mr Fang had run down to the pond and back again to tell me that he'd seen a spider.

'Is it on me?' I asked in horror.

'Nooo - but it just ran across the wall there... look, it's on one of the cabinets!'

Since I was at the opposite end of the shed and my spider phobia is tiny compared to his, I decided that attempting to run after 10 years of abstinence wasn't worth it, and besides, I could easily land in the pond. In fact, I was sure fate would conspire to bestow a comedy moment upon me should I make any attempt to move quickly. That's what usually happens. One thing I don't post on this blog much are the frequently bizarre situations in which I dislocate my knee. And I just knew the equation of me trying to hobble out of a shed and then falling into the pond with a dislocated knee would provoke not sympathy but howls of laughter amongst friends and family. So I ran away very slowly, which to the uninformed observer might have looked a little like a purposeful-but-gentle limp, but was actually a Very Fast Limp compared to my usual bipedal motion.

Five minutes later I was in the garden regretting telling poor Mr Fang that the spider's eyes were big enough to be seen on top of little stalks. Some men like to go and find peace in a shed, but Mr F will never be one of them.

After that, the shed lost it's appeal and we slunk back into the house to snack on junk food and watch Weeds.

Thoughts of establishing an efficient potting shed drifted into my mind again yesterday, and with my spider-phobic husband at work I decided to go into the shed again to plan where everything was going to go.

Again I nearly prodded the little bandage-like thingy. 'Maybe it's some kind of giant butterfly cocoon' my stupid urban mind babbled, before getting up to speed with 'Oh no, there are some cocoons under the window and they look very very small compared to this, so either something big came out of it, or lots of little things, like, um, a horde. Oh...' Oh.

With this in mind I decided to google images of wasp's nests, and found a picture. Ours looks exactly the same as the one posted above. Some of the pictures that looked like ours were labelled 'hornets', not wasps.

'Oh' indeed.

Cue a call to the local council pest control department, who were probably out slaying things and didn't answer the phone. Still, our local services are reasonably efficient and allow you to complete an online form if you can't find anyone to speak to. I found the pest control section on their website easily enough and began to fill it in.

Please state the nature of the problem
Wasp or hornet's nest

Please state the location of the problem
Garden shed

Please state what action you require us to take
Please come and get rid of it, because we don't want to try it ourselves.
My husband is unavailable to go into the shed.
I am disabled and am only capable of running away very slowly.

PLEASE don't let yourself in!

2006-08-01T14:40:00.000+01:00

I took some desperate measures lately when staying in an adapted bungalow during a working away trip. The bungalow was part of a site where people have their own place, but have care staff letting themselves in to help on a regular basis. What I didn't know at the time was that the 'vacant' bungalow I'd been allocated was the one where all the staff used to go to hang out in and have their fag breaks. And the set up was such that you couldn't lock yourself in.

The first night there I assumed I'd had a weird dream that a man was in another room in the bungalow and he had a bad cough. I distinctly remember giving myself a stern talking to regarding the non-existence of ghosts, and that I'd be better off going back to sleep than leaving my bed to investigate something that wasn't real...

...then early on in the morning, I was just coming to when I heard a someone letting herself in the front door. Before I knew it there was a strange lady standing in the bedroom wanting to know who I was and what I was doing there because she wanted to put the telly on and have a cup of tea before starting work. Eeek! Was the coughing man real? Nobody ever admitted to it.

After a further morning visit from a young Portugese gentleman who didn't seem to understand me telling him I was living and working there for a while, I decided to tape over the keyhole and attach a message with a heartfelt plea. Dunno why I took a picture of it, but there you go. No more interruptions, thank goodness, but I was slightly twitchy until I left.

I sometimes wonder if I'm unlucky when it comes to working away accomodation, or if these frequently bizarre happenings are something every disabled person experiences?

itunes quiz

2006-07-28T15:36:00.000+01:00

I stole this from The Goldfish, who stole it from Timmargh , cos I'm tired and have just come home from an overnight trip. Except for my managing to spectacularly flood the wet-room style accessible bathroom at the hotel, the accomodation was fine. (Gasp-shock-horror). I don't want to get a wet room in our bathroom at home anymore.

By the way, some of the 'total song's total are down to a selection of Mr Fang's music on my ipod, and also a couple of albums from his parents called things like 'Scottish Tranquility' that I had to add when we went on holiday with them recently. Thank God they didn't stumble across Tenacious D...

How many songs:
2961

Sort by song title
First Song: ...So Addictive (Intro) - Missy Elliot
Last Song: Zombie - The Cranberries (snap! Goldfish)

Sort by time
Shortest Song: Passive Manipulation - The White Stripes 0:35
Longest Song: Dazed and Confused - Led Zeppelin 25:25

Sort by artist
First Artist: 60ft Dolls
Last Artist: Wilson Pickett

Sort by album
First Album: ...So Addictive - Missy Elliot
Last Album: Youv'e Come A Long Way Baby - Fatboy Slim

Top Three Most Played Songs:
1. Hallelujah - Jeff Buckley
2. Powdered Wig Machine - (from the Desert Sessions 9 & 10, PJ Harvey on vocals)
3. Celebrity Skin - Hole

Search words: - how many songs come up?
Sex - 19, including Sex Pistols, James Brown... and Spinal Tap?!
Death - 7, including Nick Cave, Marilyn Manson, and Edvard Grieg's Peer Gynt Suites
Love - 189, including Steve Earle, Nina Simone... and Whitesnake?!

(Spinal Tap and Whitesnake are Mr Fang's, I swear). And I am adding a new category just to lower the tone;

Fuck - how many songs come up? 7, Eels, Amy Winehouse, Lenny Kravitz, Tenacious D, Peaches and P J Harvey... wash your mouths out with soap and water.

Wassat, Peaches? You need more soap?

The wonders of nature!

2006-07-26T15:04:00.000+01:00

I wanted to post something happy about our garden.

Since it's been so hot, Mr Fang and I have hardly stayed indoors in the evenings. We've taken to sitting in the garden waiting for the evening cool to descend, feeding the fish who now flock to the edge of the pond opening and closing their mouths, aquatic golden pac-men. As darkness falls we switch on the lamps at the side of the pond. It's lovely and peaceful.

The more you're out there, the more you notice going on.

We discovered there are frogs as well as fish. The first night we noticed we were out making a lot of noise talking with a friend. Suddenly a frog unselfconciously hopped out of the pond and made its way past our feet to the wall of the house, where the latest ant colony is trying to set up home. He spent the evening happily scoffing them down before heading back the way he came, ending his debut with a few swift laps round the lamplit pond. Then we spied another frog sitting right by a light catching the small insects that were attracted to it. And another. In't nature brilliant?

For a few nights now there's also been a strange rustling coming from one of the bushes next to the pond. We guessed at cats, birds, even rats... it never usually amounted to much. But other night we found out what was making it. Sitting in the gloom, enjoying the cool, the rustling began as it usually did. Then there was a new sound, a raspy, repetitive scratching sound. Whoever was in the bush had obviously decided we weren't a threat, so it was going to go ahead and make as much noise as it liked.

If you'd ever had a pet cat or dog you'd recognise this sound. It's the unmistakable sound of a hind claw furiously scratching at an ear. We grinned at each other and mouthed, "Hedgehog!"

A little later, after almost non-stop scratching at such a frantic level we desperately wanted to go into the bush and help, the hedgehog emerged. It looked sleepily around. It decided to have a scratch. Bumbling into the lamplight around the pond unaware or perhaps without a care that it had an audience, it stopped for another scratch. And another. It couldn't have put on a better comedy turn for us. We'd had a few glasses of wine at this point. The beleagured hedgehog kept interupting its movements to scratch, leaving us silently helpless with laughter. No doubt Bill Oddie would have had his head in his hands at our lack of respect for the distress of this poor wild creature. The frogs didn't think it was funny either. Every step the hedgehog made brought it closer to them - although it clearly wasn't able to concentrate on anything but scratching. One step. Stop for a scratch. Splash into the pond goes the nearest frog. Another step. Another scratch. A splash. A scratch. And so on, until all the frogs were in the pond, whereupon the hedgehog paused to look a little annoyed at our stifled giggles. With further comedic effect, it hauled its flea-plagued bulk over the small brick edging at the back of the pond and disappeared under a conifer. More scratching noises. Making the assumption the show was over we relaxed and howled with laughter.

This was quickly cut short by another hedgehog-shaped shadow barrelling into the pond area, passing right under Mr Fang's sun lounger. We stopped laughing to see a smaller hedgehog, who looked like it knew exactly where it was going, corner the pond and scramble rather more deftly over the brick to underneath the conifers.

Rustling ensued, then it all went silent. Was it a hedghog rendezvous? We waited with baited breath, wondering what the next noise was going to be. I think if we'd heard another scratch at this point we'd have been in hysterics. But what we did hear wasn't another scratching noise... Having never fully understood what gave hedgehogs the name 'hedgehog' before, I was about to find out.

The strangest racket began emanating from the lower conifer branches. HUMMMNAHAARUMPHHH, HUMMMNAHAARUMPHHHAAAA, HUMMMNAHAARUMPHHHA HA HARRGGGHHH! The lower branches were shaking. I shot a wild look at Mr Fang. He was doubled up again on his sun lounger with the giggles.

"What's going on?" I whispered frantically "Are they shagging?"

"No, you idiot," he shot back, "It's HEDGEHOGGING! That's why they're called hedgeHOGS...!"

We both collapsed with the giggles again. It really is a very funny sound. Now and again, the hedgehog stopped it's outrageously loud snuffling to listen to us, but pretty soon it realised it wasn't under any threat and we could talk normally.

I've seen hedgehogs before, of course, although they're mostly flat and therefore have a tendency to be on the quiet side. I've never heard them make the snuffling noise that gives them their name. I'd heard screaming at night, which is apparently what they do when they shag, but I'd always blamed that on cats.

It was nice to know the local wildlife felt comfortable in our garden. And I do mean was nice to know...

The night before last, I'd gone to bed early. Mr Fang was in the garden by himself enjoying a glass of wine. The frogs were by the lights at the edge of the pond catching flies. The hedghogs were snuffling for insects under the conifers. Indeed, all was right with the world.

Without warning, a large moth flew into Mr Fang's ear, startling him and causing him to cry out in alarm. He jumped up, and in his haste, threw the glass of wine all over himself. Yelping at the sudden wetness, and the tickly buzzing thing trying to find a nice dark place in his ear, Mr Fang did a little dance round the garden, trying desperately to make sure his ear was free of moth.

Plop! All the frogs dived into the pond.

The hedgehogs fled in fear of the stompy cursing thing to the garden next door.

We haven't seen or heard them since. I do hope they come back.

Just shopping, like you do

2006-07-17T16:11:00.000+01:00

So last week I'm in town, browsing in the shopping centre, and spy a shop called aftershock. Lots of swirly pretty dresses. All up on rail too high for yours truly, but gamely, possibly in spite of this, I wheel in and begin pulling at skirts and sleeves until something interesting falls down and I can decide I don't like it.

And then she spots me. Someone who want to ask the dreaded question, WWWY. Whats Wrong With You?

(Simply this. It's hot. My arse irons creases into everything I wear and I can't find a rail of dresses my height, let alone an actual dress).

I am distracted by the fans blowing dresses everywhere and dresses falling on my head so am slightly caught off guard when she trills;

"Ooo, look at you...!

In a wheelchair!

And you're so pretty!"

(This isn't neccesarily the truth. People will always say this, even if you're an utter minger, because they think it's the right thing to say).

So I just smile and wheel away, but the damn woman follows me. Smiling. Asking questions and babbling.

"Whats wrong with you?

Can you stand? A little bit?"

"I do charity work at the local hospice..."

Etc.

Retreating in the opposite direction is an inticement to her rather than a rebuff. And damn, it's soo hot. Stupidly I retreat further into the shop and away from the door. No way out. I turn round and face her.

She is an Elizabeth Taylor in meltdown, wild black curls variously flattened and sprouting out at odd angles all over her head. Sweating profusely in a long sleeved red velvet top stretched tight across a large, red, velvet covered apple of a tummy. Too much gold jewellery. And eyeliner so runny it is speckled and smudged in patches right down to her heavily rouged cheeks. She's not going to go away until she gets a response from me. I kind of get the feeling flippancy would be cruel. Luckily she breaks the silence.

"What's your star sign? Scorpio? Pisces?"

"Capricorn."

"Oh. Right."

(I smile a little. People never guess Capricorn. What is it with people who think they can guess your star sign? Isn't Capricorn a glamorous enough answer? And once you say you're a Capricorn, they act like game over. It seems Capricorns are too dull for star sign bonding. No Capricorn has ever asked me for my star sign, and I would be shocked if one ever did).

"I'm Gemini," she says like it should mean something profound (- Does it? Please tell me if you know...), and then quickly changes tactic and we're back on the old, um, leg, issue.

"Darling, tell me... were you born like that?

(Like what? With a chair stuck to my arse, fresh from the womb? I think, but don't say out loud. My poor Mother. Think of the stitches...).

But I haven't the heart to say that to this curious individual who looks like she's just leapt through from a parallel universe, so I just say,

"Yes. But not in the chair all my life. Well, it's been nice talking to you. Goodbye." And wheel behind a rail.

She follows me again.

"Can you stand? A little bit?"

"I do what I can," I say, wearily. "I'm sorry, but I must get on. Got to get back to work." I lie.

"Yes," she says, nodding, like it's the missing piece in the puzzle. The she shoots me this mysterious look and adds "Hmmm. That's because you're a Capricorn..."And just goes. I could say say she clicked her heels together and vanished in a yellow puff of smoke, but it was more like she clicked her yellow teeth together and the fans were blowing dresses all over the place, but anyway, before I could say "Goodbye" again in another attempt at a forced-yet-polite-manner, or even "What's because I'm a Capricorn?" I didn't have to because she had gone.

But did she mean she knew because Capricorns are known to be concientious workers, or because they are known to hang around dress shops lying about having to go back to some ficticious work? It's all so complicated.

And I didn't even find a dress.

Note To Self

2006-07-11T10:33:00.000+01:00

1. Keep mouth closed when triking. It stops things getting in.

Up the alley, round the corner...

2006-07-10T12:00:00.000+01:00

I couldn't not post about the trike now I've got it. It arrived last Thursday, and after an anxious evening supervising Mr F putting it together, and a few inevitable teething problems, it is up and running.

For the first time in 10 or more years I have been able to go outdoors and explore where I am living. It has seemed almost churlish, over the years to mind about that, when I have been able to drive places. But there is a difference. Going from house to car to accessible building and back again negates the experience of being outdoors. The places I could not drive to before have now opened up to me - my immediate neighbourhood, it's streets and houses, the alleyway that runs past the bottom of the garden - these are now places I am beginning to know. That I have the ability to know. Since last September when we moved here, I have been looking at the alley, wondering where it went and what was on the other side... It's a big posh estate, a darn sight posher than our 'side'. But now I know, and now I can get there too.

For the first 4-6 outings I'm only able to go about a mile or so, then I have to return home to recharge the batteries. I know sod-all about batteries, but the paperwork says they only have a preliminary charge and the battery capacity must be built up slowly before they are able to be used over longer distances. I've been out 3 times so far. The first time I was scared about tipping over, so I only went up and down our little bumpy road until I'd done a mile. Mr Fang stood there grinning like a proud parent. The second time I went down the alley and discovered Poshland. The third time, I went the opposite way down the alley to the main road, and had a staring match with the big smelly cows who glare at the passing traffic from their farm across the road. Surprisingly for beasts of such huge bulk they were quite shy and reluctant to meet my gaze, so I turned around and went back down the alley to the smooth tarmacked surfaces of Poshland to practice opening the throttle.

Up to the point of my third outing, I'd thought part of the battery procedure meant I could only go slowly. The trike has two speed settings - slow for pavements and pedestrian areas, and fast for everywhere else. Fast hadn't seemed a good idea on my road, with its lumps and bumps and slow-moving pensioners visiting each other for tea. But Poshland's smooth roads are an invitation - especially as most end in little cul-de-sacs and are very quiet.

The first time I opened up the throttle, it was a revelation. I'd never ever gone this fast outside of a car independently. I tried a few swerves. Yes! I turned round and did it all over again. Yes! I kept expecting the batteries to lose power, or for something to go horribly wrong, because I didn't feel like I could possibly do this and get away with it. But apart from the speedometer telling me it was nearly time to go home and recharge the batteries, nothing did. On my final lap I realised I had a spectator. A kid, on what looked like his first bike - complete with stabilisers, had come to the end of his road and was staring at me. With a look of definite jealousy. And I could see this kid thinking 'why doesn't my bike go that fast?'

I suddenly wondered what it was this kid was actually seeing - an older girl on a fast bike? A wheelchair user with a strange bike-thing on the front of her chair? Just as suddenly I realised it didn't matter what he thought, except he could see it was fast, and that was good. I also felt there was nothing to say to him about the hows and whys of the situation, so with one last rev I disappeared back up the alleyway back home to put the batteries on charge.

It looks like rain today. I suppose that means I shall get wet on today's trip out. How novel!

You Better Shape Up

2006-06-30T15:19:00.000+01:00

In my last post I said I didn't want to moan about disability experiences all the time, but then today I was sent an opportunity by Shape. They are looking for stories (good and bad) about experiences with Access to Work. Being slightly less curmugeonly as usual on this bright and sunny day, I took the opportunity to backslide. Also, lazily, in the heat, and because I have neglected Fangworld a bit lately, I have decided to reproduce it here as a post. I better hope A to W don't know who I am after the honeyed ending of my last entry. But then again they will have a new opportunity to impress me once the novelty of the new powertrike has worn off (and I realise that I'll never get within 3 feet of my computer with the trike attachment stuck on the front of my wheelchair).

I will post something happy and fluffy next week. Maybe.

What stage are you at in your Access to Work journey?
I've twice sent off for the paperwork, but haven't returned the forms, the first time because I had such an awful phone call with them, the second time because they told me at the enquiry stage that I had to be first assessed by my local wheelchair service, and complications with the wheelchair service waiting list have meant I've gone beyond the deadline Access to Work set on their form. This is an ongoing situation, and because they won't take a general enquiry about the local difficulties I'm having, I've just given up hope they'll process any application for a wheelchair to work until my local wheelchair service re-assesses me. I have a sneaking suspicision this may be wrong, but they're so difficult to talk to I've pretty much given up until everything locally is sorted, which in my case may take another 12 months or so.

How would you describe your relationship with Access to Work?
Iffy. I feel like I'm about to be judged, and have had enough of that everywhere else already. I feel very suspicious of staff disability awareness.
Besides, I'm still not clear on what they'll do for me, because they don't seem to welcome general enquiries before I've applied. This makes me uneasy about the service will really provide for me, when it finally happens. I'm pretty sure they're suspicious, rather than supportive, of self-employed disabled people. And artists.

Tell us - in as much or as little detail as you like - what your experience of Access to Work has been and what kind of end result you've achieved.
I rang them on the advice of a mentor when doing my first residency as a disabled artist. The man on the phone was vile. I asked if he would answer some questions I had prior to my applying, so I could see if it was worth me doing so. I said I didn't really know what I could apply for. He refused. He insisted that unless I started an application he would not be able to talk to me. I started giving him the information he asked for, but after my name and address he asked me what my disability was. I didn't think he meant diagnosis, so I told him I was a wheelchair user because I had a mobility impairment. He sounded annoyed and said I had to tell him my diagnosis. I said it was a genetic disorder and gave him the (unusual) name, whereupon he said "Yes, but what does that mean?" I felt forced at this point to describe symptoms, in detail that I do not normally feel comfortable doing, like how it affected my bone structure. He asked me what help "I thought" (i.e. as if I was stupid) I needed, and I said I'd like to be able to hire a personal assistant. He told me flat out I couldn't have one. After a pause, he explained this was because Access To Work didn't call them personal assistants, they called them support workers.
I got so cross with this kind of patronising crap that I asked to speak to his boss, who agreed with me when I said I didn't like his attitude, but didn't send me out a complaint form like she told me she would. She was ok to talk to, but again, wouldn't answer any general enquiries.

Now, I know they cannot promise any help or equipment at that early stage of someone approaching them, but I felt like the reluctance to discuss the ways in which help might be offered, and how their procedures worked, bordered on the assumption that as a disabled person, I would be too stupid to know the difference between information on general procedure or a promise to provide something! Which frankly, was insulting.

When I found out they sent you a form to fill in with the details you'd given over the phone, I wasn't surprised to see the name of my diagnosis spelt wrong, and badly summarised. After the detailed medical information the man had said he needed, on the form I was simply classed as someone who was "deformed". At this point my confidence was in my boots. It was the first 3 months of my self-employment and this had felt like a bad medical appointment. I actually had a cry over my encounter with them on this occasion, and told my mentor I'd rather walk over hot coals than go back and ask them for help. This was in 2002.

Years later, my career had been going well, but I was struggling to cope physically. I rang them up, and I'll be damned if it wasn't the same vile man again. So I just put the phone down and dialled again until a different person answered the phone. Again, an enquiry about the process proved awkward - and there was definite suspicion when I said I was self-employed. This made me angry. Self-employment is a perfectly reasonable thing for a disabled person to do - isn't it? Yet again I felt the person on the other end of the phone couldn't quite believe what I was telling them - I felt like they were suggesting I was delusional when I said I was a self employed artist, and that they suspected the reality was I drew a couple of pictures in a supported group every now and then. Again, how judgmental and patronising.

How can applicants trust they will get real help when the staff are openly subjective at such an early point of contact? I understand that an artist's career path and working circumstances may be a little more unusual than a 9-to-5-office job, but some suspension of disbelief would be nice. A bit of recognition of initiative would be nice - it isn't easy to be self employed and it is NOT my fault, I am NOT awkward if my working practice doesn't fit what the person on the other end of the phone is used to.

I need their help in the future and am a bit more battle-scarred nowadays, so this time I will keep pushing for help. The difference is if this time the process is prejudicial at any stage, I will complain until something is done about it rather than backing away, at this point in my health, the consequences are that I would be out of a job. Which is allegedly something the government doesn't want.

Has Access to Work changed your experiences at work? If so, how? If not, why not?
Not yet. If it is correct that they do not assess you for a wheelchair at work until your local wheelchair service has re-assessed you, then this (in my case) can mean a long time waiting and struggling at work in the meantime. And if Dr. Evil takes my call again I'm going to get his name.

Happier things

2006-06-28T11:53:00.000+01:00

I've done it! I've ordered one of these!

This comes on the back of me trying for ages to get an electric chair. It will happen, one day, but I first set the wheels in motion (or not as the case may be) nearly 3 years ago. One of the reasons I got my condition properly diagnosed was the onset of trouble using my upper body - with carpal-tunnel like symptoms in my wrists and unstable, subluxing shoulders. It's difficult to push if your shoulder starts going off exploring your upper back.

As a result of the diagnosis, we changed the car. We moved to an accessible bungalow. Lots of stuff. Y'know. Effort. Expenditure.

My local wheelchair service, who were always very good to me, agreed to provide me with a powerchair. The week before we moved into the bungalow. Oops.

So they gave me a letter instead, which said they'd assessed me, dotted the i's and crossed the t's, and the conclusion was I qualified for a powerchair, for me to pass on to my new wheelchair service in the new district.

But things are never that simple, and although I like to keep this blog focussed on disability-related happenings in life, I can't be bothered to type out in detail the whole saga about all the cr@p that came flying my way from that point on.

When your GP supports you to stop self propelling, the Professor who diagnosed you, your (iffy) Rhematologist, your former wheelchair service provider, and even your physio says to you "Have you ever thought've getting a powerchair? I'll help in any way I can...", you'd think that with much pleading, form filling, and effort, one might manifest, in a year or two, or three, maybe? Particularly when someone where you used to live had already put you through the system, complete with 18 month waiting list?

But not a sausage, mate, not a bloody sausage. Likely I'm doomed to start from the bottom of someone else's waiting list, before even going back to the bottom of the pile for my current wheelchair service provider. You couldn't make this up. And at this stage, I'm so sick of it all, that if one - just one - of these so-called organisations supposed to 'help' me called me up, and said "If we gave you a sausage, just one little sausage, not even a fancy Tescos Finest Pork-and-Apple Sausage, would you just, like, go away, like, forever?"

I'd say yes. Yeeeeeeeeeeeesssssssss. Because now, I've got myself a powertrike! Bugger off! Begone from me, cruel cripple baiting organisations! 16mph (for the price of my current manual wheelchair) nar, nar, na nar nar, get outta my way *biiig raspberry blowing sounds* *finger sticking up* *tongue out* Ha. Ha. Etc. And Stuff. Yeah.

Except. Access to Work. I still love you. Please don't tell me it will turn sour between us. Can I have a powerchair for work? A Balder will do.

Thankyou.

Back to Reality

2006-05-30T10:49:00.000+01:00

I've just re-read my last post, and can't help feeling a wave of despair at my seemingly optimistic outlook. Arrgh.

The last hotel plumbed new depths of awful, ones I'm sure many crips will be already acquainted with. I suppose my witterings on last time " ...I'm a fairly able wheelchair user, I'm pretty sure if I can't manage... any room that puports to be physically accessible to a wheelchair user would be a nightmare for anyone with less ability to get around" prompted fate to reach up and smack me down, big time.

I was, as mentioned earlier, staying for 6 nights rather than my customary overnight stay. This being the case, I'd taken particular care on picking somewhere. I asked more questions, and in fact, had this place recommended by someone at the organisation I was visiting - which works with disabled people. This hotel is undergoing extensive redevelopment and had made it known to the organisation who recommended it, that such enlightened things as ajoining rooms for carers were being planned. At the time I felt this signaled a high level of awareness that made me feel more secure. I checked their access statement online, which clearly had a row of happy looking green ticks alongside the question "Are the following locations accessible by ramped access with a 1:12 gradient or less (which could be portable), or by lift, or without using stairs? Hotel entrance, Bar entrance, Leisure facilities entrance, Restaurant entrance, Lounge entrance.

Yeah, right.

It was that week when we had all the rain and high winds. The room was in one building on top of a hill. The reception, breakfast room, bar and dining room were in another building, at the bottom of the hill. Hurrah!
No indoor corridor. No 1-in-12 on the walkway between the two buidlings either. In fact, it was so steep they'd staggered the path into 3 sections to make the distance and the gradient manageable. For able-bodied people. So before I got my key, I negotiated room service, but it's not as much fun when you're there for a whole week without the prospect of leaving your room.

The room was fine - it had the best shower and bath arrangement I'd ever seen. Whilst I was being shown to my room, the lady mentioned the whole thing was being ripped out a week after I left and 'upgraded'. Haahaahahahaahahahahahaaaa. Ha. Hah.

On top of this, in no particular order, the following occurred.
Recovering from a dislocated shoulder, I trapped my arm in the heavy entrance doors to the accomodation block, brusing my arm. The car park was occupied by builders - guess which spaces they'd put up their little huts in? The pathway from the car park to the room had no dropped kerb. After the second day the builders blocked off the car park from the pathway. On the third morning I found they'd blocked access from the accomodation block to all routes except the steep walkway between the two buildings. The manager promised me it wouldn't happen again. It happened every morning until the morning I left.

And, it's a small point, and one I can personally get around, but why, oh why, when you stay in a wheelchair accessible room, do they put a bloody PEDAL bin in the bathroom? It's like a, a jaunty little hat on a serial killer! It's godamn EVIL!

So I won't be going back there.

Nag for Victory!

2006-05-18T11:41:00.000+01:00

I'm currently nursing a poorly shoulder and searching for accommodation for my latest work trip.

I'll be away for a week this time. Usually it's one or two nights. Lots of variety at the moment, because hotels in the town I am working in have very varied notions of what disability access is. Luckily I can use crutches a bit for short distances and put weight through my good right knee joint, but quite frankly, if I couldn't, most hotels would be virtually unusable on my own.

On the first visit, I stayed in an establishment with 'quality' in it's name. Oh dear. On arriving in the car park, I sighted a ramp so steep it was clearly impossible. At the top of it, like evil icing on a rancid cake, was a door that opened outwards, waiting to knock any pioneering crip who reached the top of the ramp sideways off the steep incline as they attempted to enter.

I'm beginning to see how many hotels get around access obligations by making little adjustments here and there that are really designed to have an underlying message saying "Not You"! On the face of it, they meet DDA requirements. So, it's usually a war of nerves when I drive up, being ever so polite with an underlying message to the hotel that lousy 'adjustments' Will Not Do.

My coping strategy for these inevitable situations is to sit in the car park and phone them up. Then I say something along the lines of "I'm a lone disabled woman, very tired, who has just driven 150 miles to get to your establishment that you swore was fully accessible, only to find I'm stuck in your car park because (delete where applicable);

a) Your manager has parked his Jaguar in the only disabled parking space
b) You neglected to tell me the car park was a gravel filled crater 800 yards away from the entrance
c) The portable ramp you told me would be in place from midday today appears to have vanished
d) The ramp that is actually in place will kill me if I attempt to use it

So far nobody has expressed a desire to see my imminent demise, although I'm sure some have been silently intoning "Oh no..." under their breath as they saunter out into the car park with a look of innocent confusion as I point out a stunningly obvious detail that they'd never seen before. I guess smug is a bad look really.

On this particular occasion, the manageress of quality establishment that I was staying in decided to push me up the evil ramp, whereupon we came to a dead halt at it's partner-in-crime, the outwards opening door.

"Could you open that?" asked my pushee.

I tried. It was locked.

"Oh, it needs a key," she said, letting go of one handle of the chair to fish in her pocket. We slid down the ramp in a gentle sideways manner whereupon she halted my backwards descent by getting the toe of a rather nice pair of shoes under my back wheel. (I fought the urge to point out this was Really Not My Fault, and If Only...).

Armed with the key, we tried again. I was impressed as she pre-empted the opening of the door outwards by backing me down the ramp, and then shoving the chair up it again with such force I shot over the threshold and narrowly missed the wall directly in front of me.

Next obstacle was some deep red plush carpet. You can't really admonish hotels for having soft carpets, but to someone who self propels, you might as well be pushing through sand or grass. Another two thresholds, one narrow corridor lined with little tables and floor-strewn bed sheets later, and we were in the room. The hotel had an extension, and their accessible room was the furthest away from the main part of the hotel, where the bar, the breakfast room, reception, and the dining room were.

Ever get the feeling people don't want you around? Anyway...

Another frequently overlooked thing with many hotels is that the shower head in the so-called accessible bathroom is often mounted over the bath taps, on the wall at standing height. You have to get in the bath, stand up - which is difficult if you can't or there are no handrails in the right place - and unhook it. I usually shower sitting down, so something 5 foot above my head when I'm sitting in the bath is no good to me. If I have someone accompanying me to the room, I always ask them to wait whilst I check out the bathroom, so if this needs doing they can do it for me.

It is here I realise many staff simply haven't had good access training, and are scared of what a disabled person might ask them to do. A crip going into a bathroom saying "follow me in here a minute, would you?" puts the fear of god into them! Some are a wee bit too keen though, which scares me just as much. After I'd explained it was only because I needed help unhooking the showerhead, one young man asked me three times if I was sure I didn't need help going to the toilet or getting in the bath. I hastily looked around for the closest weapon to hand, it being a rather scruffy toilet brush, and happily he thought better of it.

What follows is usually a question "Is everything all right for you?"

I used to say yes, then wait for them to leave before scooting round the room tutting at anything unsuitable, like heavy chairs in the way, or the hairdryer out of my reach. Now I ask them to wait whilst I check. I don't enjoy complaining, as you might think, but I do want to be comfortable - and I just can't help being bemused at the kind of set ups I frequently encounter. This is because I'm a fairly able wheelchair user. I'm pretty sure if I can't manage on this basis, any room that puports to be physically accessible to a wheelchair user would be a nightmare for anyone with less ability to get around.

If you see something that isn't right, for you, or the crip that comes after, I strongly believe you should say something to the hotel. Moaning about it after you leave is a bit weasel-minded, if you ask me. How are people going to know if they're not told? There's no need to be rude - especially if there is something they can do for you to make it easier. Staying away is now a fact of life - I don't want to be throwing fits every time I go somewhere, especially not as I'm fast beginning to realise nowhere is perfect. I like traveling. It puts me in a cheerful mood. Of course, I miss Mr Fang greatly, but I also enjoy being independent, often getting great pleasure from being able to solve these obstacles in an affable manner. Mediation is the key, and if they're going to see your business again, a few gentle words of encouragement.

This is where money can play a part, for better or for worse. Discounts for disabled people can be a contentious issue. I'm happy to pay in full - if I'm getting the same service as everybody else - and not take a concession. If the service is limited because of poor access, especially if I've been told this is not the case, I'll ask for a further discount of some kind. Negotiating stuff like this shouldn't be awkward and it can be be a way of offloading any justified frustration. If you get someone with a bit of brain they might even learn something. (That reminds me - must go on holiday somewhere I can use my new haggling skills...).

My usual compromise if it's a long way to the restaurant and the room turns out to be difficult to use, is to ask for room service without the supplement they charge for delivering it to your room. In addition, many room service menus don't offer the same meals you get in the restaurant. If you can't can't go there, then ask to be able to choose from the restaurant menu as well. Most of the time, if the discussion is friendly, hotels seem happy to accommodate this. The situation will be in your favor if they've just seen you struggle to do something they do without thinking.

This 'quality' place with awful access turned out to have a lovely manageress, who made sure I could order anything I liked on room service, waived the charge for my (modest, promise) bar bill, and promised to change the ramp to a 1 in 12 gradient. Whether she will or not, I don't know, but next week I will visit to see if she has. When someone appears to be genuinely concerned about the difficulties we face, I'm always curious to know if they've forgotten about it the next morning.

If not, I'll follow it up with a gentle phone call reminding her the service far outshone their access, and I'd be happy to give them my money again (not to mention receive free glasses of wine with room service) if only they'd make me feel a bit more welcome by removing the underlying "Not You!" message from their access provision.

A little comment confession

2006-05-05T08:53:00.000+01:00

I've been tinkering with the comments option and now the comments are viewable.

It was only my incompetence, or more fair to say, lack of interaction with blogger lately that meant I hadn't noticed some changes have been made to comment moderation. Now things should work again.

One thing that didn't help, is that whilst I had given no e-mail address for blogger to send pre-moderated comments to, I couldn't view them online either (by clicking the down arrow on the comments moderation page). I don't think Blogger likes my Safari browser, and it will take me a while longer to update stuff on my Mac (due to recent life upheavals and consequently being behind with everything). And money, of course. Working on that one. More hotel stories coming soon...

I'm really posting to say thank you for all the kind comments I've received - now read and much appreciated. And to apologise if you've posted a comment and I haven't replied - I may not have the time to go back through them, so in short, thank you all for your condolences, and yes, I had a good easter but ate far too much chocolate, Becca, in the end, we found somewhere with good toilet pics and prompty booked it, but if you know any nice gafs in Cornwall or the Scottish Highlands for future refs let me know, and Mone, thanks for those toilet pictures... at least someone knows the importance of having a good -

I should probably just stop here.

BADD and Proud

2006-05-01T18:16:00.000+01:00

So, here we are, on blogging against Disablism day.

I"ve been thinking about my own personal take on all this, knowing that every disabled individual taking part will have stories to tell. I suppose as good a start as any is to tell you one of mine.

I remember interviewing someone to help me with an arts workshop I ran regularly, as my volunteer. A colleague mentioned one lady"s name to me, so I duly gave her an interview on the understanding she was a pleasant person who was happy to give some free time as her children were settled in middle school. At the time I was around 29 years old, working in community arts, dreaming of being an artist, but not having found my 'direction' and was, quite frankly, hanging around waiting for inspiration, or divine intervention to strike me.

The interview went smoothly enough, and this lady was indeed a pleasant individual. During the interview we began to talk about family. She asked me if I had any children, to which I replied no, I wanted to develop my career. Surely at some point I wanted to be a mother, she said. Well, no, not really, I replied, I didn't feel any maternal urges and would, in fact, be happy if parenthood passed me by completely so I could concentrate on my career. (Fair enough in these times, don't you think? If you're a disabled woman, think again. As women, we may be edging further along the equality ladder, but as disabled women, maybe not so fast).

To my complete and utter surprise, the conversation took a sudden sinister turn. Suddenly this pleasant and generous individual, whom I considered my equal, and meant me no harm, began to theorise about my lack of maternal urges. It was only natural, she said, that I had no desire to be a mother. Indeed, it was obvious, seeing as my condition was a genetic one, that within me there was some kind of natural failsafe, courtesy of Mother Nature, that prevented me having the urge to procreate, so I would not, and I quote "pollute the gene pool with your faulty genes."

Phew. Let's just rewind a bit, shall we?

Firstly, I am alive. No matter what disadvantage, if any, my genes give me, my family have survived to deliver me and my brother into the present time. (I'm banking on my brother's natural Casanova instincts to carry on the legacy into the future, by the way).

Secondly, should I wish to have a child, I have every right to do so, and as a member of a supposedly democratic society, no-one else has the right to make a judgment on my suitability to reproduce.

Thirdly, pollute the gene pool? What about celebrating diversity? Celebrating difference? If anyone is in any doubt, I'm happy with who I am, and if that means I move differently, work different hours, go shopping differently, have sex differently, or drive a different car, then I can - and I will.

I can't speak for other people, but I think the world would be a deadly boring place if we all looked the same, had the same colour skin, had the same religious beliefs, desired the same kind of individual, had the same gender preferences, gave deference to one sex of human being over the other, in fact ANYTHING that made us so singular that all identity was selectively bred out, cancelled out by genocide, operated on until no individual features remained, or all behaviour suppressed until we all conformed to being some one acceptable thing.

You can read about all the different experiences people have because today is Blogging Against Disablism Day. This came about because one disabled writer had the idea to unite disabled people throughout the blogosphere to write about their lives. It's a brilliant idea, something that should make people sit up and take notice. Maybe change a few opinions. She has her own motivation for doing it, as have we all. Where will it get us in the future? Who knows'?

In short, thanks to the pleasant lady who enlightened me to the fact that I had no urge to reproduce so I would not pollute the gene pool (and many more like her), I found my artistic direction and became part of the Disability Arts world. I wanted to make art to tell people what it is like to be the world I am in. I wanted to let this lady and other like her know that being disabled isn't just about whatever your impairment is, but how society behaves toward you. And show that there's another way, maybe a more equal way, to think about things. And have a laugh, of course. Look at things a different way. Bend a few minds. Get my hands dirty...

You may have seen some Disability Art. You may not. It isn't in many art history books - it hasn't been present - or documented in the same way art by other artists has. No disabled artists have won the Turner prize - yet. You might have seen a naked disabled woman on a plinth in Trafalgar Square recently who is an artist, but she didn't make the piece, it was made by an able-bodied man. Still, progress, of sorts. Apparently Brian Sewell wasn't best pleased...

But maybe one day, eh? Keep watching.

Want to know more about Disability Arts? Follow the link below.
What Is Disability Arts?

Be BADD on 1st May 2006

2006-04-19T13:00:00.000+01:00

More information on the brilliant Diary Of A Goldfish (BADD is her idea!)

Keep Those Human Weeds Off The Green

2006-04-11T17:00:00.000+01:00

What a wonderful week it has been to vent some well-justified crip fury!

Only a few days ago Sue Minter, former director of the Eden Project, stepped down for making negative comments about keeping disabled workers behind the scenes for 'the image of professional horticulture' You can read the full story in Horticulture Week here.

Then Tiger Woods makes a comment about 'putting like a spaz' and the media go to town.

So in summary, we are human weeds who shouldn't be seen in professional horticulture in case we lower the tone, and on top of that, it's a given that those of us who experience spasticity in our limbs are unlikely to be a success on the golf course.

Whilst I think professional horticulture needs a good kick up the arse (and am currently doing some research into why there is thought that learning disabled people working in horticulture devalues it), this Tiger Woods story has me in a much more optimistic mood. The poor sod. I bet what he's gone and done is just used a bit of slang he's probably heard all his life, without really thinking about what it means to a certain group in society. I am pleased there's been a furore about it though, because perhaps it means people are sitting up and taking notice of disability discrimination in language. The Eden Project story sank pretty fast, too fast for my liking, but the fuss over Woods has restored a little bit of optimism that the media think these issues are worth discussing.

I strongly believe disabled people are poor relations when it comes to equality, compared to some groups in society (not that I'm begrudging them anything, of course). Therefore, it doesn't surprise me that negative references to disability in everyday language are still very much in existence, and people use them, often without thinking. Despite glimmerings of hope over the reaction to Wood's comment, I do feel we're still very much in the dark ages.

For example, I no longer am prevented from entering places because I am female, and Rosa Parks, who defied segregation and got on the bus (alongside other prominent black campaigners) helped progress racial integration, ooo, back in 1955. The US Supreme Court ruled in November 1956 that segregation on transportation was unconstitutional. It's now 2006 and can I get on a bus yet in the UK? Nope, I bloody well can't. Can I go to cinema with a bunch of my wheelchair using mates? Can I arse. Or even cross the threshold of every place I'd like to visit. It will be 2020 before I have full (legal) rights and access to all public transport in the UK, and only last week I was in a little Cotswold village eating my lunch on the pavement because the establishment's entrance physically barred me from getting into the place. (And this is gospel - a black American woman stopped to commiserate my segregation and joined me in glaring through the window at the owner in a very satisfying manner).

I scoured the Sunday papers last weekend for a fuller dissection of the Eden Project row and found nothing. I'll scour them again next Sunday for articles discussing the Tiger Woods comment, possibly with more success - Woods is a global sports star, and the higher the pedestal, the greater the fall. But I wonder if those articles do appear, they'll largely be written by able-bodied journalists, from an able-bodied perspective?

There's just not enough of us to be seen out in public - yet.

Show Us The Toilet

2006-04-10T14:52:00.000+01:00

Right. Looking for holiday accomodation for myself, Mr F, and Mr F's parents. Mr F's Father is a member of the crip bretheren too. Lots of pictures of pretty bedrooms, views, cosy living rooms, but has nobody ever told these businesses what disabled customers really want, as a priority, is to see WHETHER OR NOT YOU CAN GET TO THE TOILET.

Are pictures of adapted bathrooms too much to ask? Maybe they ain't as pretty as a sea view, but who cares about the sea if ya gotta cross your legs?

Because frankly, (and I know this blog has a lot of toilet references, but..) if I can go to the loo, and preferably have a wash, then all the other priorities stack up from there.

Am I wrong, fellow crips?

A Sad Start To 2006

2006-03-29T15:44:00.000+01:00

Well, if anyone's reading, you'll have noticed Fangworld has been pretty quiet since January.

Early Feb, a friend of ours died of cancer. Then my Dad died suddenly, but peacefully, early March.

The death of a parent is a devastating thing and the emotions we have all gone through over the past few weeks are far-ranging and very powerful. I always have trouble with the belief thing - it's hard to believe someone I've known all my life, spent time with, laughed with, fought with, loved and made up with, has gone.

God, this is hard to write. My Dad loved his life. He was one of those people who was always busy. If he's looking down on me now, I bet he'll be wondering why I spend time writing this blog. I dunno myself sometimes, but have a vague notion a higher purpose will make itself known someday.

Time heals, I guess.

I'm still here.

Whale in London

2006-01-20T16:01:00.000Z

There's a whale in London. In the River Thames. If you go to the BBC's web site you can watch live coverage of a bit of grey blubber amidst the greenish choppy water. Woo.

Someone from the Marine Connection (a whale and dolphin protection charity), said "The last thing we want to do is stress the animal out."

What are the chances of that happening, then? Its already got it's own web coverage, a host of boats carrying pursuing 'concerned' whale conservation people, as well as the rest of the media too bored or tipsy on a Friday afternoon to cover any serious news - and I just betcha that someone, somewhere in our capital is busy making up some crappy t-shirts for the tourists.

Meanwhile in Fangworld, Mr Fang has badly broken and dislocated his little toe, and is trying to out-crip me with his cries of pain, general limping, and requests for painkillers. To his credit, he's gone into work today because they are busy, but has been signed off for two weeks and will be competing with me for the sofa and the telly remote until the end of the month.

I might have known this was coming ever since he got pissed on Christmas Day and took himself off to the kitchen (leaving me with my parents and Grandpa in the living room watching 'Singin' In The Rain, at top volume since Grandpa's hearing aids were faulty...) to try and do wheelies in my wheelchair.

Looks like the game's up. Take me to the river.

Farewell, My Spoon

2006-01-16T15:13:00.000Z

I am learning to cook, properly, that is, with raw ingredients instead of opening packets and tins. Now I can get my wheelchair in the kitchen, experiments are occuring that may mean I am able to sometime cook Mr Fang's dinner when he comes home. Tonight we're having parmesan rissotto followed by creme brulee. I can't decide whether to make the brulee with Baileys or bananas, but such are the burdensome decisions of a cook.

Happily my newly found enthusiasm for cooking has been precluded by buying things - a few books to get me started, namely Hugh Fearnly Whittingstall's Meat Cookbook, Gary Rhode's Keeping It Simple, and that scary Scots lady Gillian McKeith's 'You Are What You Eat' cookbook. (I must be at least 60% biscuit, then...).

Don't ever watch her show, though, unless you get a secret thrill by seeing fat people being told they are going to kill themselves with junk food by a small angry blonde woman armed with a tub full of rancid poo. It's enough to put you off nutritionists for life. The book talks a bit more sense, although she has come under critcism in the press for expecting people to source too many bizarre foods and go shopping too often. I don't care about that stuff, though. I am a novelty dieter, so all this specific blabber about rare seaweeds and sprouting sprouts just means more playtime to me.

Even better, my favourite new toy is a small cook's blowtorch. Nobody would buy me one for Christmas, so I bought one myself with my birthday money as soon as I could reach the shops. Mr Fang has already confiscated it, and it is currently sitting on a high shelf he thinks I cannot reach. Unfortunately he has forgotten my 'handy grabber' gadget from the occupational therapist, with which I shall be able to rescue it with ease.

I'm sure will all turn out well, and he will relent after the fabulous creme brulee I will be serving tonight as the surprise dessert - as long as I don't burn down the kitchen first. As if.

New (Average) Feet! Part 2

2006-01-13T14:55:00.000Z

The most painless appointments I’ve ever had are the ones with the Orthotic department – the ones who look after your feet. Lax connective tissue means I have a perfectly decent-looking foot arch when my feet are off the ground, but nothing to speak of when I put weight on my feet. As the bone structure in my legs is a tad, um, customised, this gives me all sorts of falling-over and potential injury problems. Our local department is run by a dour and homesick Scottish gentleman, who nonetheless is a pleasure to deal with as his focus is actually making things better for you rather than ‘observing protocol’ or ‘watching budgets’.

Orthotics is tucked away beyond various twists and turns of characterless hospital corridors like some long lost secret island. You only find directions to it if you look in very specific and varying places on the walls (and on one occasion, the floor) for the small, eclectic signs. After the fifth or sixth turn, the general buzz of hospital noise abates, and you don’t see anybody anymore.

As I wheeled along these silent corridors, I came upon a table placed in the middle of the floor that I could not negotiate. Beyond this was the final corner that would lead me to the reception area. Unfortunately the table was so placed as to alert you to a large, square hole in the floor, possibly access to some sort of basement area, with torchlight streaming upwards from it in such a manner than it reminded me of some kind of hellish pit. I could go no further and there was nobody about.

‘Hello…?’ I called down the hole, a little cautiously, lest a devil in the shape of a maintenance person should rise up from it and drag me down into it. They don’t give them any people skills training, you know. My enquiry was met with silence. ‘Probably busy devouring some poor patient’, I thought, turning around just to check one wasn’t sneaking up on me from behind. I tried another, bolder sounding hello, followed by an equally loud curse seeing as there was no one about. ‘Bugger, bugger, bugger, how am I supposed to get past this?’ I asked loudly, to nobody in particular. The pit remained silent. ‘What a stupid place for a hole’, I continued, even bolder still. ‘Right in the middle of the bloody floor getting in the way…’, I then gave way to some heavy sighing and rolling of eyeballs, in the hope such displeasure could somehow magick someone to my aid. I turned around to check my back was clear once again, and there he was, my dour Scottish orthoticist, standing behind me staring at the hole with a similarly grim look.

‘We need another room,’ he said, and disappeared back the way I had come, stopping briefly at the end of the corridor to summon me to follow before disappearing down another at the speed of a white rabbit down a hole. I followed as best I could, regretting there wasn’t time to tie a piece of string to the table leg so I could get back to somewhere I knew if I lost him.

After several corridors, we arrived in what looked like a GP’s reception area with posters about flu jabs and asthma clinics and magazines – but completely empty. In the middle of this room was a cubicle not unlike the ones you get at social security offices – heavily fortified to protect the staff from violent attacks. The cubicle was filled with women talking loudly about Celebrity Big Brother.

‘Oh good God,’ muttered the Orthoticist under his breath, before advancing on the cubicle and requesting an unoccupied room due to the fact his disabled patient couldn’t negotiate a hole in the floor to get to his department, and he needed to just see if the insoles he’d made me would fit in my shoes. ‘We’ll be two minutes’ he said to the horrified ladies, who looked as if he’d just asked if would be ok for us to pee on their rug. ‘We can’t let you use a doctors room,’ they chorused ‘the doctors don’t like anybody using their rooms.’

‘Ok thanks’, he replied, completely ignoring their warnings ‘We’ll be in that one over there for two minutes’, causing them all to take off into a rather satisfying flap. Before they could fly at us like demonic monkeys out of a gilded cage, we hastily picked a door and opened it, whereupon he briefly fell over a small storage heater. Before you could say ‘Fly, my pretty ones’, a woman was at my back, still chanting ‘The doctors don’t like anybody using their rooms!’

Seeing as the storage heater and now my wheelchair prevented her from getting any further into the room, we simply ignored her cries and got ready to fit the insoles. ‘If some people had brains they’d be dangerous,’ the Orthoticist muttered to no one in particular, whilst I just grinned and gave her what I hoped was a friendly wave. She repeated herself one more time before going forlornly back to the cubicle. A door slammed.

Just as he predicted, our appointment lasted all of two minutes as he fitted the insoles into my shoes. They fitted perfectly first time. My knee alignment feels somewhat like I think other people’s knee alignment might feel. It’s a strangely, stable sort of normalness feeling. The insoles are a pretty blue colour too.

I’d like to tell you of the dangerous adventures I had after leaving the room, back past the cubicle of celebrity-obsessed GP surgery guard-women, finding my way through the strangely quiet yet menacing corridors, and heroic avoidance of dangerous holes in the floor, but I would be lying.

New (Average) Feet! Part 1

2006-01-13T12:34:00.000Z

The hospital loves me. I went to another department yesterday for something completely different. Nothing particularly sinister, though. The main reason I am having all these visits recently is, after moving house and getting a full diagnosis last year, that they are ‘aware’ of lots of symptoms I have that may need monitoring, investigating, and ‘little adjustments’ in the bracing, pill popping, hormone ingesting (there, that’s got you thinking…) department.

The most painful of these is what is happening in various internal regions of my person. As well as connective tissue wearing out around my joints, internally, things are also taking a bashing, not helped in the least by an overall tendency to bleed more easily that the average person. This has led, lately, to possibly alarming symptoms that once investigated, turned out to be benign. Again.

Typically, people in the connective tissue disorder ballpark have all sorts of symptoms of, oh, stuff and things, most of them also seen in your more standard issue human body. It may be one of the reasons we fail so spectacularly to get diagnosed – to a doctor, the carpal tunnel system symptoms you are manifesting usually do not mean you are any more ‘special’ (eek!) or unusual than the next person – it’s just that someone without fragile connective tissue might get them after a long spell typing without taking the recommended breaks, whilst you might get them after chopping a few carrots.

This has happened to me.

The trick for people in the helping professions is to recognise something more might be amiss, based on the equation of effort-versus-effect, and this is sometimes difficult to do without wondering if the person before you is not simply a frenzied moron who likes to exaggerate everything.

When you can’t even chop a carrot for your dinner without the fear of not being able to brush your teeth the next morning, or have carrots for dinner two days in a row, you know you’re different – yet the actual symptom isn’t any different from that of an average person. Yet the manifestation of the symptom itself isn’t life threatening, and like everyone else’s, will subside with the proper treatment and rest. Consequently, your attempts to convince the doctors of this small but vital difference in your individual circumstances may sound like some kind of hysterical paranoia they cannot understand.

When you like carrots, but the consequences of your chopping them up for dinner every night could, in the long run, lead to irreversible degenerative changes in your wrist joints, it’s time to be alert, checked up, dosed up, and monitored. Or have a carer chop them, of course, so that your wrists are preserved and you can wipe your arse yourself in old age, but that means diagnosis, and proof, and other such tiresomely bureaucratic things.

It’s a shame that the human race has a general tendency to freeloading – if it didn’t, one might be able to say ‘I have (insert applicable symptom)’ and simply be offered the requisite support without having to spend years chasing other human beings with the sufficient gravitas to prove that the unhappy individual did, indeed, require such support several years before it actually arrives.

So, you see, once you have that magical piece of paper from the specialist, it may suggest to the doctors providing your care that some more serious consequence might be afoot. In short, impending arthritis, a rupture, a collapse of a vital organ, or a piece of body being in the wrong place. Whilst they have no compunctions about telling you you’re a hypochondriac and to bugger off when they assume you are a normal member of the human race, the piece of paper saying you are not makes all the difference.

It is, in fact, refreshing to have moved house in the middle of all this referral business and not to have to go back to the particularly unpleasant ones with an ‘I told you so’ look upon my face. One might think the opportunity to get satisfaction in this way would be something to be wished for, but quite honestly, now it’s had a year to sink in, it would be just too depressing.

Did I ever say I’m not bitter?

This was just going to be a short blog entry about getting new pair of insoles from the orthotic department...

A Happy Doctor

2006-01-11T13:09:00.000Z

I am gobsmacked. I've had a lot of hospital-ly to-ing and fro-ing happening at the moment, and have just got back from an (NHS) appointment where the doctor was:

a) Cheerful and jovial
b) Let me get a word in edgeways
c) Discussed some 'was if's' and 'maybes' without that kind of medical paranonia that patients may sue or take it as gospel
d) Offered to send me a copy of the consultation letter without my asking (Hoarding consulatation letters is useful because they help when applying for stuff)

and lastly

5) Is retiring in three months time

Dammit.

Maybe the secret is to catch them in some kind of golden time when they know their escape is imminent. He gleefully remarked that for nearly four years the hospital management has known they were going to lose several top consultants around the same time, but despite urging from these specialists, had set up no contigency plans.

'So I gave them as little notice as possible...'

Goodness gracious me.

Fix It Yourself

2006-01-08T22:16:00.000Z

FANGWORLD IS BACK IN BUSINESS, DEFYING ILL HEALTH AND NO CENTRAL HEATING THE THE COMPUTER ROOM!

ALL COMMENTS OFF FOR NOW - SORRY, I TRIED THE SPAM METHOD AND JUST COULDN'T COPE WITH IT.

A reckless desire overtook me recently - to take my manual wheelchair apart. This is usually the job of the wheelchair service, but I sense a general lack of enthusiasm from them to keep it well maintained. If something major goes wrong I might get a new part, but for general maintenance, as long as it rolls forward a bit then no other investigations are attempted. I've had it for 6 years now and it's looking a little battered, and it seems to be more and more difficult to use. So far I've blamed this solely on my degenerative wrist joints rather than poor general maintenance. The maintenance guy, lets call him Gavin (a huge, scary, bow-tie wearing 'comedian' of a chap who when he's not working takes crip kids to Lourdes for 'cures' - in a bus I suspect, has rainbows painted on it), does come out once in a while and tighten a nut or two, but each time he's told me nothing major was wrong. He always tells me on pain of death not to attempt any maintenance myself. If you don't look convinced enough, he will tell you tales of poor crips who have broken this vow and the 'orrible penalties they suffered. Our sort aren't meant for initiative, and god forbid we'd be right in saying the equipment we use every day isn't performing the way it used to. And by the way, have I ever been to Lourdes? Consequently, I've been blaming my poor old wrists for all the trouble I've had and desperately seeking some other way to get the chair looked at.

Suddenly, last week, desperation took hold and I went to bed early with the instruction manual in a determined mood to 'fix' the dratted thing once and for all the next day. I figured that reading something technical late at night might mean the complicated bits stuck in my mind the for next day. I reasoned that this was the way I used to revise German vocabulary at school – and some of it used to sink in. I'm not a technical person really. If left to my usual creative methods, I might arrange nuts and bolts to look aesthetically pleasing, but not actually enable the chair to work. Anyway. I got down to some serious study figuring a little technical insight might remedy any gaps in my un-technical outlook.

The castor assembly seemed an easy first thing to experiment with. They've not been performing well, despite the wheelchair service guy declaring the rubber wasn't worn enough for new ones to be ordered. If you spun them round when the chair was off the ground, they only went round half a turn, which I was sure was wrong - when I got the chair they moved easily and took at least two full rotations before they stopped.

Early next morning, after peering at the castors, it became apparent that old matted-up hair was playing a part. Hair appeared to be wrapped tightly round the castors, an offence for which I can no longer blame my dearly departed German Shepherd dog, Jacob. It’s all mine. Confident of getting it right, I set to work getting them off the, um, spindle, and was greeted by a horrific sight.

As I said, I've had the chair 6 years. In that time, my hair has been, in chronological order, bright red, blonde, a chocolaty brown with ill-judged white blonde slices, and finally, auburn. As I began to strip hair off the spindle, it became more and more apparent that hair build-up had been impeding the castors movement, layer by layer, year by year, since the day of delivery. By the time I reached the red hair layer (circa 1999), the air was blue with my cursing. How can you run a repair service and not know this kind of thing happens?! Or not care to look when some poor crip’s hands are getting sore from heaving hair-raddled castors around town? After a bit of oiling for good measure, I put the whole thing back together and hey presto! Spin city! Result.

This made me more foolishly confident. I took a quick peek at the back wheel axle assembly. In it's introduction, the manual said the chair would run more easily if the user's weight was placed over the back wheels but this had to be judged carefully as it would make the chair more liable to tip backwards. ‘So what’, I thought. ‘The position on this chair was first set by people who don't even know how to service castors! Bugger it all, I'm gonna set 'em to a speedier position. It doesn't look too difficult. Some of the instructions that aren't in Swedish are in English...’

There are several different settings on my chair, a swedish made Etac Elite. I got to work carefully, noting a little too late the pictures featuring the order of the axle nuts went in were rather blotchy-looking so it was difficult to see what went where. "So what," I thought again, making my first big mistake – if it was complicated, they'd make the instructions bigger and clearer - wouldn't they?

I am my own worst enemy at these times.

Taking it apart was easy. Mark this. It is the signal that things are going too well. All the little nuts slid off the bar smoothly, into a little unordered heap on the floor. Somewhere far, far, away, a warning bell tolled, but I was too busy working out which setting would give me the leanest, meanest, fastest speed to pay it any heed. Undoing the other side, I identified the correct setting to turn me into the next Tanni Grey-Thompson, and eager to hasten new victories, picked up the first of the nuts to fix them back onto the bar. It was at this point I realised they all had quite a distinctive shape.

Forty-five sweaty minutes later, I found a picture in the manual that clearly showed the order all the shapes had to go back on the bar. I'm not holding grudges here, but they weren't in the English version... I had to read the French, German and Swedish instructions to find the blotchy, photocopy-quality diagrams were a little clearer across the different language versions. I put everything back together with a sigh of relief that was only cut short when it became obvious something was horribly wrong with the camber of the rear wheels. The camber is what makes the back wheels stick out at an angle at the bottom, rather than go down purely vertical to the ground. It improves handling, and you see it to extreme on the big slanted wheels of sports wheelchairs. My wheels had camber, but instead of the distance between them being wider at the bottom, it was wider at the top! My chair took on a kind of 'bunged-up' look, as though it was holding itself in. Eeek! How did that happen? I knew I'd put everything back in the right order, and another forty-five minutes of sweating and looking at the Swedish instructions seemed to suggest the camber nuts had to be positioned in a certain position to give wider camber at the bottom. Taking it all apart again I re-did it, and all of sudden it began to look alright, spurring me on, when really I should have stopped and thanked my lucky stars I didn't have to wheel round in a constipated-looking wheelchair, too ashamed to call the wheelchair service and admit my crime.

By this time it was around 2.30pm. That gave me 1 1/2 hours before Mr Fang came home for our planned supermarket trip.

You’d think I’d give up gracefully at this point, but my overblown sense of triumph in righting the wheel camber meant I was hungry to fiddle some more. Picking up the manual once again, I found a relatively easy job in removing some of the stops that held the rims (the section manual wheelchair users hold to push the wheels) away from the wheels. I had no idea if having the rims closer to the wheels meant I could self-propel any easier, but ‘a change is as good as a rest’, I said to myself, and before you could say ‘Sunshine-Bus-To-Hell’, I had the rims off on the floor. Shortly afterwards there was more cursing, because all the neatly stacked little piles of stops I’d removed and set on the coffee table got knocked off somehow and rolled under the sofa. Hard floors make things roll further, y’know. Sprawling on my stomach, I struggled to collect them, and whaddya know, I managed to find all of them bar one.

3.30pm. The ‘little job’ I’d mentioned to Mr F that morning had taken me most of the day. My clothes were covered in dust from crawling around on the floor. My blood pressure was most certainly up, and I had need of a shower. I maintained a faint hope my day’s activities had upped my metabolism somewhat, so’s I could justify some kind of biscuit reward, for in the heady rush of ‘fixing’ I had forgotten to eat anything all day. Where was that last hand-rim stop? Think, Fang, think – it’ll be in the last place you expect it to be. I shifted my weight slightly, whereupon I realised I was sitting on it. Hurrah!

Half an hour later, I was back to my usual unruffled self, ready for the supermarket trip. Mr F remarked upon my work, noting the chair rolled along much more smoothly. He pushes me in the chair out-doors, whilst I take over once we are inside on smooth floors. We negotiated a kerb at record speed.

‘It was a mere trifle’, I lied. ‘Easy if you know how to read a service manual.’.

The devil must have been listening to my gloat, for the next moment the whole world turned upside down, and suddenly all I could see in front of me were my feet and the sky, shortly thereafter filled with the concerned face of Mr Fang. ‘Ermm… you certainly made a difference to the weight distribution’, he said.

Permanent Internal Biscuits

2005-10-20T12:26:00.000+01:00

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!

Headology

2005-10-19T11:32:00.000+01:00

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.

'Shedgirl' Fang takes another pot

2005-10-13T10:58:00.000+01:00

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...!

Apology

2005-10-12T13:15:00.000+01:00

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.

AF

Ambitions

2005-10-05T11:10:00.000+01:00

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.

Down To Hell And Up To Heaven

2005-10-03T17:17:00.000+01:00

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.

Loose screw

2005-08-15T20:23:00.000+01:00

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.

Food Abuse

2005-07-20T20:11:00.000+01:00

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.

Unkymoods Is Back!

2005-07-19T13:53:00.000+01:00

Unkymoods has returned!

Huzzah!

Awful Peed-On Pillows

2005-07-18T14:33:00.000+01:00

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...

Renta-Crip

2005-07-14T20:37:00.000+01:00

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...

Unkymoods is no more

2005-07-08T11:27:00.000+01:00

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.

Object Lesson

2005-06-27T15:56:00.000+01:00

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.

Purrrrrrrr.

My Life As A Token Crip

2005-06-21T15:23:00.000+01:00

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!

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

2005-05-31T15:15:00.000+01:00

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

Crip Logistics

2005-05-18T20:31:00.000+01:00

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.

Begging For Toys?

2005-05-17T12:42:00.000+01:00

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?

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

2005-05-09T15:00:00.000+01:00

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?!!!

More Pesky Hotels

2005-05-04T20:32:00.000+01:00

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?

Fish Poo Stew

2005-05-03T12:53:00.000+01:00

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.

Beyond Madness

2005-04-13T21:55:00.000+01:00

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.

Yup.

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?

Anyone?

Me And My Big Mouth

2005-04-08T07:31:00.000+01:00

Did I say I was off to live it up in a posh accessible hotel in Brighton? D-oh! It's Scotland's fault. I have been throughly spoiled for accomodation in Scotland, where 95 quid gets you pure class and an excellent 3 course breakfast. Down the southern end of the country, it is arguably a different story. Damn the photographer and website designer who made it all look so pretty online! To top it all, it was too foggy to see the sea (which wasn't strictly anyone's fault), except a becalmed sea might have soothed my spazzing nerves.

As we rolled up to the hotel, the first thing immediately apparent was the Small Harmless Step in the website photograph was actually a Chunky Bastard Monster Step. Deep breath. Second was their prestigious 30 space car park was actually a tarmacked area rented from the hotel next door. We looked on in innocent surprise at the tiny narrow spaces, and a faint warning bell sounded in my head as we realised they'd forgotton to reserve us the two I'd been allocated for wide door access. In the end Mr F dropped me off outside the hotel and went to park, whilst I sat in full view of the reception desk, glaring at the monster step and a little sticker on the door saying "We Are Access Friendly".

My gaze wandered past the reception area up to the bar, an inviting, well lit area, with a polished wooden bar and gleaming optics. I say 'up to' because it was raised up on a platform with steps leading to it. Undaunted, I imagined somewhere out of my line of vision there was probably an equally smart ramp, which I might glide up soon in search of a much needed gin.

As Mr F returned and hauled me up the step, we realised there were double automatic doors just inside the entrance, and one was broken. The young man at reception who had watched me for a good ten minutes while Mr F tried to park the car, dashed to wrestle with the uncoperating door a fraction of a second after we'd manovered through it. We watched him sympathetically from the reception desk until he decided the best thing to do to save face would be to give up and just issue us with the room key. Through the double doors, to the lift, on the first floor. Ah, the lift.

Ever been to somewhere that tries to do grand on a small scale? We had to pass through two small but heavy wooden double doors in a frame that could have easily housed one. Double doors for a wheelchair user usually mean someone will prop open one with their body, and reach over with an arm to hold open the other. You wheel through under an armpit. I don't like stranger's armpits, even if they are clean and respectable. You just never know, until it's too late, and by then they're expecting a thank you. Mr F, whose armpits I am married to along with the rest of him, was about to perform the manouvre but we had been sighted, and an eager member of staff came over to demonstrate the access-friendlyness the sticker on their door said they had. After an amusing struggle and the obligatory thank-you's, we were delivered through the bright reception area into a dark, thickly carpeted corridor, which gave off the unmistakable air of a mature seaside hotel.

At the lift we met a pleasant lady who told us a funny story about how the lift had already got stuck twice that week. Laughing in what appeared to be an genuinely casual manner, she reassured us she knew which button to press to raise the alarm. But when the lift came, like the doors, it was strangly compact, so she declined to travel with us - kindly saving me another intimate encounter with a strange body. Inside, it was mirrored from halfway up the walls to the ceiling, so I sat quietly and contemplated my forehead as it rumbled up to the first floor and our room.

The Queen's suite! Finally we had arrived. Right opposite the lift, for which I prayed - after being in a similar position at a Premier Travel Inn recently - wouldn't mean we'd hear people coming and going all night. Mr F opened the door and we went in to what I can truthfully say has been one of the most freakish juxtapositions accomodation-wise I have ever encountered in the service industry.

The room was huge. There was a four poster bed. It could have come from Ikea and been stained dark, although I could be being unkind. It looked a little bare, and sadly this lack of drapery led the eye upwards to a most unusual sight. The ceiling, although it began quite normally where the wall ended with some nicely elaborate coving, was a modern-day office style suspended ceiling! Think nasty, textured prefab tiles, some stained, some skewed, all unlovely. The main lights in the room were set flat in this horror of a ceiling - the yellowy bulb lights you might expect to find - well, lets face it, in your local dole office. We were staggered - even me, who was at this point still sitting down. It just didn't fit.

There was a fucking big television a couple of miles opposite the bed. It was just as well really. Comically, hidden behind it were the only visible plug sockets in the room, and a wall mounted, yellowed complimentary hairdryer with the concentrator nozzle missing.

Mr Fang beat me to the complimentary tea tray. "Coffee, tea, no hot chocolate, and only one packet of biscuits," he said dolefully. We shared a look of mounting horror.

Over to the window area at the far side of the room, there were grand floor-to-ceiling curtains in a small raised area - reachable only by a step, that contained a couple of sofas and a table. A small, elaborately framed picture sat forlornly on the wall nearby, which strangly, was the only wall decoration in the whole vastness of the room... It turned out to be a small typed notice saying "Please Contact Reception If You Require Our Portable Ramp". I knew there was too much sea mist around to haul myself up to catch a glimpse of the sea, so I consoled myself there was still the bathroom and the much longed for jacuzzi to be discovered. I scooted off in anticipation. I never learn, me.

The bathroom, sadly, did not match the vastness of the main bedroom. It was a narrow little prefab afterthought. You went through a door with a horrid stiff ornate handle to face the toilet sideways on, with the tub on your left and a narrow route between the two to the washbasin set in the far corner. The full disappointment of my naively raised hopes hit home as I saw the 'jacuzzi' was in fact a corner bath, set with a few water jets (which looked like they needed a good scrub). Instinctively, my eye wandered around to look for any cleaning stuff, and alighted instead on a poor lonely handrail, set vertically in the opposite wall, too far back from the toilet to be of any practical use - even for a most hypermobile person like myself. The bath had handrails too - once again, mostly likely fixed by an alien odd-jobbing his way round this neck of the galaxy. The first offender sat vertically at arms length away from the bath, and the secord lurked beneath horizontally running along the back wall. I figured you could rise up gripping the lower horizontal one and drag yourself hand over hand until you got to the vertical one. The sides of the bath were curved on the inside so you couldn't actually stand that close to the edge when in the bath, and the side of the bath was narrow, which meant that even though my bum is not particularly big, I might not be able to sit and balance on the side to get out without toppling off and smashing my head on the toilet seat, but heigh-ho. Luckily I have some mobility, and distant memories of scrambling up mount Snowden in my more active days.

Mr F poked his head round the door. "Oh," he said "it's a bath". And went out again.

Meantime, there was the route to the washbasin to consider. Could I squeeze past in my chair? Possibly not. In a sort of tantrum crips have when they know access is no longer proper access, but needs must, I barged through with only the slightest of pauses to see if anything broke. But the toilet seat moved to one side surprisingly easily, as did the side of the bath, which made me suspect some other wheelchair-using pioneer must have done this neccessary violence before me. On the way to the sink, I spied the towel rail, alledgedly heated, but with no switch anywhere, just a worringly loose connection cable into the wall. I could be kind here and say it was set at a jaunty angle, but not so the green diamond tile transfers stuck on at odd intervals to add a bit of interest. They were definitely on the piss.

I haven't got anything bad to say about the wash basin.

I reversed back, with two things on my mind. First thing was we were getting a substantial discount for the room. Second is we had half an hour to change and get to the art gallery. I pushed it all to the back of my mind, ran a brush through my hair, put my red party shoes on, and we left. It would be dark when we got back, and I would be pissed, then we would go to sleep, get up, and leave, never to return.

P.S.
On the way out, the assistant came after us just as Mr F was dragging me down the Chunky Bastard Monster Step. It was the same guy who had booked us in and just checked us out. "We've a got a ramp for that step, sir" he said.

Crip Gold

2005-03-30T20:48:00.000+01:00

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

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

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

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

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

The endlessly facinating averageness of the regular human condition

2005-03-24T12:02:00.000Z

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

Don't expect a Fangworld book anytime soon.

My trawl today spawned a great deal of;

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

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

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

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

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

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

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

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

?

91.2

2005-03-22T15:24:00.000Z

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

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

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

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

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

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

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

Real life disability jackasses?!

2005-03-08T14:21:00.000Z

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

Wheelchair Junkie

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

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

Self he-he-he Heeelp

2005-03-04T14:13:00.000Z

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

Nearly.

Almost.

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

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

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

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

Conciousness occurs, remember what planet am on.

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

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

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

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

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

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

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

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

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

Have little rest.

Float to computer. Check e-mail. Potter.

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

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

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

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

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

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

Go to bed, etc, etc.

Sleep.

Conciousness occurs, remember what planet...

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

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

Being blessed

2005-02-25T15:48:00.001Z

Ok, how many disabled people out there have been 'blessed' by believers?

Oh, I'm sorry.

But congrats on still being you. We need to be ourselves. Maybe one day they'll wake up to the realisation we are not necessarily living in deficit. Maybe we ARE all here for a reason, if that reason is only to bother Glen Hoddle. (Glen Hoddle is a UK football manager who fell from grace after claiming that disabled people's impairments weres a result of bad karma from past lives. Naturally, the disability world, no, in fact everyone who thought he was a rubbish football manager - opened an ocean of brown stuff upon his head. BTW, I hear his new club has a lively disabled members section...)

I have been blessed. Twice. The Good Guys Don't Judge. Except with blessing you, because you might be in need of a blessing.

The first time, I'd gone to visit a church to see an exhibition of a student's artwork in the foyer. She was a nice lady and I wanted to see her show others her work. Afterwards she invited me to join her at evening service. A couple of my other students were there too, so I though it would be cool to just go along and spend some time with them.

It started off nice and gently, all smiles, a few lively toons. There was clapping. Not as dull a church as the one I'd been to as a kid, nor as frightening as the 'free' one my parents sent me to for a while.

Then it all went pear-shaped. Yikes! My lady pointed me out to the Reverend. Had there been a conspiracy all along? He loomed over the bench where I was sitting. I tried not to shrink back in horror as he placed his big, sweaty paw upon my forehead. The noise went up to 11... People cheered... I wondered if the sweat from his palm would melt my foundation.
"Cure her so she may walk again!" he boomed, to the delight of the congregation. Prayers followed - although my condition is genetic - it runs through me like a stick of Blackpool rock - so I don't see myself as 'sick'. I have some Stuff to deal with, true, but then - everyone has Stuff to deal with, don't they?
I was too embarrassed to blurt this out at the time, but in dreams I see myself spin round, eyes flashing, a shriek errupting from my lips, "IT'S PART OF ME FOREVER! AND I'M NOT SORRY...!!!"....They all fade away. Cut to darkness.

After the service, people gathered round - I was a celebrity touched by the power. They were so happy! It was horrible. Powerless suddenly to back off, the centre of attention for a belief I didn't hold...

I do believe we have a soul, and my soul was wounded that I might be judged in need of 'being put right'. It's truly sad disabled people are regularly seen this way. So much for the social model. Few make the assumption that things might just be right as they are. In circumstances like this, you look back and think of all the witty things you might have said and the different ways you could of handled it. But all I can say after that was I wanted to get the hell out of there, and quickly. I was stunned it had ever happened - all what you'd commonly call Good People who meant me no harm. But there you go - that's diversity. Other people's stuff happens to you too. In ways you can't imagine.

For a while I was wary in case I was cured, or in case anyone came up to me and cured me again. I steered clear of religious people at work. I was grumpier, definitely, with people who suggested cures might come my way.

And then damn me if it didn't happen again! It's art exhibitions in churches that do it. Maybe I should just look on them as occupational hazards of my job.

I was semi ready this time, as the vicar steered himself my way, a beatific smile on his face. On this occasion, I was exhibiting some work and it was the private view.

"HELLO" he said, in capitals. "ARE YOU HERE TO SEE SOMEBODY'S WORK?"

"Yes", I replied, feeling defensive. "Mine."

"OH" he boomed, "HOW CLEVER. WHICH ONE IS YOURS?"

I pointed to a series of work I'd done with a distinct disability activist theme. "These", I replied, in such a way I hoped convey pride, savvy, and intelligence.

"Oh", he said distantly. His voice dropped a few decibels. You may find that in this sort of situation your companion will slide the conversation onto something else, usually a personal question that destabilises you as capable-adult in some way.

"How did you get here tonight? Your parents?"

"No, I drove myself."

"Alone? You can drive?!..."

We went on in what I could only describe as parley, with me assuring him I was independent, drove and didn't live at home with my parents - fair enough, being 34 years of age. I thought I was holding my own. I lived with my partner, I told him. After 11 years, we were too serious to say 'boyfriend'. And this vicar was making me feel about 12 years old. Big mistake. I forgot the big guy was probably used to careful language. A little wave of shock danced accross his face.
"Partner? Ohhh! You mean you're a lesbian?!"
Dammit, I wished I was for a moment - I'd never have been happier to proclaim it.

Instead, I 'fessed up to Living In Sin with a Man. (And being disabled, making activist artwork, and attending private views, in my own car). I'm sure it isn't a lesser crime in the bible, but the vicar rallied admirably.

He blessed me. He laid his hand on my shoulder. Heavily. Was it shock or will to impose?

"No thank you", I said.

No thank you.

Besides, ever thought disabled people might be the ones who are here to teach You a lesson, huh, buddy?

Getting Wired

2005-02-18T17:10:00.000Z

I've been searching for alternative pain relief since being taken off my anti-inflammatorys just before Christmas. Vioxx and Celebrex are no more in the UK - well, nobody'll gimme 'em any anymore, which is a bea-tch because my guts don't like the other stuff - voltarol, ketoprofen, naproxen and so on.

I was in hospital a while ago complaining when my dose of diclofenac was put up, knowing full well my stomach wasn't up to it. Two days later curled up in a ball groaning and puking, a rhematologist came along and said "you're not feeling very well, are you?" (Thank God For The Ones Who Notice) The man put me on Vioxx and to be honest, sometimes, (well, if I was single anyway) I think I'd rather take the drug and take the risks. I've taken enough risks with other drugs - one which is actually doing me some good, in enabling me to feel better, would be worth taking a chance on... more so than ones that just encourage me to eat my own bodyweight five times over, commune with psychedelic amphibians, float, watch cr@ppy films, and... I could go on, but I think you get the picture.

I'd really like to ring the fools at the Celebrex PR office for announcing it just before Christmas, the ultimate season of pigging out, knowing full well all the poor buggers who were on it were probably taking it because all the other pills ate up their stomach linings. Some fool up there ruined Christmas for a lot of disabled people, and I'll be adding them to my list for glorious retribution at some point in the future.

So Christmas feasting was postponed due to me trying ketoprofen again. Arrgh. I was predicably sick, acid reflux and so on. At least I didn't put on any weight on, although Mr Fang's parents bought us a bread machine so I have made up for it since.

Since then I've been eating painkillers, being off work, and taking life in the slow lane. I can't, I won't quite believe this is IT on the pain solution front. What a crappy way to live. My local hospital say it'll be 5 months or so before I can see a specialised physio or have any pain management too. I'm determined not to be found dead next to a note that says I can't take it anymore - but I have thought about it. And decided not yet. Coming back to this entry today and editing it is particularly poignant as I've just discovered one of my all time heros, Hunter S. Thompson is dead. I wonder what would happen to the system if one criteria for urgent treatment was getting to the point where you sit at home with a gun to your head? Oh, Hunter...

Somebody convert me, fool me, sell me a quack cure, convince me to wear a turquoise tracksuit or whatever, and I'll do it, I'm ready. Bring it on as long as it tricks my foggy, opiate ridden brain into thinking pain is not devilling me any more. Just for a little while. I'm alright really. Aren't I? But sometimes when you're not having a good time, and your mind explores the options... stuff flits into your head.

Deep down I'm chicken, boring and sensible though, so last Thursday I took myself off to the local chemists and borrowed a tens machine. Bless the chemist for doing something like this - you don't want to buy one and find out they're not for you, and the only other route to borrowing is usually the NHS. And you have to get there first.. which is a circus and takes too bloody long for people who have chronic complaints as opposed to the ones who have something spectacular and urgent guaranteed to push up the stats.

I'm going to finish the blog about the TeNS machine some other time.

A Diagnosis! In Dobly!

2005-02-13T18:08:00.000Z

Has anyone noticed? I think one person is reading, and thank you very much.

I'm back.

After the last rant about thoughtless doctors, I met one with a brain (oh yes!) - and he has fully diagnosed my condition.

I knew I was getting close to a diagnosis, which is why it was on my mind. Be careful what you ask for... no, that's stupid, I knew he wasn't going to tell me I had a career waiting as a prima ballerina, and a positive diagnosis will stop other, incompetent doctors proposing inappropriate treatment, operations, and even on one occasion, a mental health problem (apart from the one I knew I had... it was a long time ago... etc...).

So after 35 years of being me, it has been an unexpected head-trip to find out that many things are not just my own unique quirkiness, but are owned by a whole 'nother bunch of genetically freestyling humans as well.

Anyway, so that's my excuse for not maintaining my blog. Sorry.

Now I'm going through a mental gamut of Thank Goodness! Oh God! What Next?! as any 'normal' person would. (That bit kind of amuses me....). The doctor has given me a bit of time off to organise new treatments, better gadgets and various tests to see if other bits of me are: a) in the right place b) the right size and c) still working.

I just found out my heart and important various blood vessels are normal, and, for a sad old goth as I'm sure you can appreciate, this was a bit of a shock. (Partly in a good way, I will grudgingly admit.)

Mr Fang, who is a sad old rocker, is always taunting me about dead goths, saying there aren't any, which is a bit of a poor show for a sub-culture obsessed with death. But then again, if we were dead, we wouldn't be able to enjoy the anticipation of death, would we? Ha. (But if you're reading this and you know of any dead goths, would you drop me a line? Make sure they're famous, preferably nationally / internationally - it's no good trying to win and argument with Mr F over someone's goth mate who's only a legend in their local boozer's band. It'd have to be in the Hussey/Eldritch league to be any good. Thanks).

But that's not all that's been happening. The somewhat dazed and confused diagnosis-type atmosphere currently hanging over our house has partly been broken by a foolish whim I had a few weeks ago, setting in place an ugly and disturbing mental infestation of myself and Mr F - only he likes it - and I don't.

It started when I was in a discount bookshop a few weeks ago and bought him a book. It cost �1.68. I bought it because I love him, and because I thought it would be a Very Small Passing Thing, because if something is being sold in this shop, for less than a fiver, it poses no danger of infatuation to anyone anymore. It is last years news. OVER. OVER AND GONE.

But oh, how wrong I was...!

The book is called "This Is Spinal Tap - The Official Companion."

Y'see, if ya haven't seen or heard of Spinal Tap, you might as well stop reading now - because the rest of this blog will probably ramble on about an in-joke rock band parody, which is what Spinal Tap was - a comedy film of a 'band' living the rock'n'roll lifestyle, but the joke is oh, how close to reality it actually was. Any bloke who has ever worn spandex, played guitar in a crap rock band (and plenty of good ones as well... Justin Hawkins, pay mind to your trouser situation), or stuffed anything, vegetable, sock or the like, down the trouser department, will identify with the soul of this movie.

'Spinal Tap' wrote songs, have albums on sale, and performed at gigs, as well as shooting the film 'This Is Spinal Tap' and 'The Return Of Spinal Tap'. And it has a cult following, which had largely passed over me apart from the odd occasion I went out with rockers instead of goths, well, in fact, I only went out with one rocker, and then I married him, so I had seen it, got the jokes, noted the comparisons in his record collection, (and seeing as there's a band out there called Whitesnake, allegedly named after the frontman's dick), I believed it. And as far as the world of rock'n'roll goes, Mr F has been there, seen it, done it, and got the t-shirts - all duly covered in those tell-tale little holes... you know what I'm talking about... so it resonates with his very soul.

But I thought that bit of his soul was buried deep down by now. We're thirty-somethings who've settled down to nights in front of the telly. A bit of gardening at weekends. His favourite way to unwind is to cook a nice meal... so I woefully underestimated the effect that this book would have...

On being presented with it, it was seized, digested, and regurgitated at frightening speed. I would be upstairs pottering about when hysterical snorts and chuckles would float through the house, accompanied by wobbly nostalgic singing.

Within 2 days of getting the book, we were sitting down to the dvd.

All the old lines. All the old songs. "(Listen to the) Flower People", "Gimme Some Money", "Big Bottom", "Sex Farm", et al. I merely thought it would be an evening's distration and forgot how catchy those damn songs were, and the effect they had on Mr F, who joyously rediscovered his inner 14 yr old greebo, hollering "talk about bum cakes, my girl's got 'em', every flippin' time I passed by.

Taking in my diagnosis, going for tests and reading up about what afflictions may beset me in coming years has had a somewhat surreal quality as we simultaneously wallow in Spinal Tap lyrics. Like in hospital. 9 o'clock in the morning. I'm shivering in a hospital gown, covered from navel to chest in cold blue goo, looking at him smiling reassuringly as he mouths....

... "Working onna SEX FARM, Tryin' to raise some HARD LOVE, Getting out ma PITCH FORK, POKING your HAY.... SEX FARM WOMAN....."

In the car, with the results, going home, with him singing, "I saw her on Monday, 'twas my lucky BUM DAY, ya know WHAT I MEAN... I love her each weekday, each VELVETY CHEEK DAY, ya know WHAT I MEAN..."

It's frighteningly ironic, but my condition is a genetic connective tissue disorder called Ehlers-Danlos Syndrome. It causes a varying amount of symptoms, and one of them is - wait for it - 'velvety' skin...!

Can I ever put into words the feeling in my heart as he turns to me whilst singing this particular line and gives me a fond little wink?

It must be in the stars.

So that's where we're at, at the moment. We spent the weekend decorating and simultaneously singing Spinal Tap lyrics. I didn't want to, but they've infected me too. Our dratted cheapo DVD player that never plays anything you put in it without a fight, automatically switches on the Spinal Tap film as soon as we plug the telly back in, like some kind of demonic portent. He gives me this look, and I say ok. It'll pass. It's better than wallowing in pity. Just.

(Except the buggers made a sequel - The Return Of Spinal Tap - and he made me order it seeing as I'm at home all day. We're stuck, stuck in the middle of a Spinal Tap infested dreamstate until it arrives, and he promptly learns new song, like "Bitch School", "The Sun Never Sweats" and 'Break Like The Wind"...)

Help!

You Can't Teach An Old Doc New Tricks

2004-09-30T13:02:00.000+01:00

Can we teach the medical profession new tricks? How much longer will society tolerate high-handed attitudes from doctors who seem to forget they didn't invent the human body, medical science is still young, incomplete and therefore on occasion the benefit of the doubt or an admission of "We don't know" is not failure, but honesty? My body is mine and mine alone - I wish I'd never let glory hunting fiends muck it up to see what happens if you chop off a bit here and stick it on there.

I'm totally incredulous that now things are going up the swannee again, trying to get some support is such an uphill struggle. If I could go back a few years I'd tell my younger self not to believe them so readily. And just when you think it's all over, oops, here we go again.

I recently went to see the local orthopaedic consultant at my local hospital. Several years ago he referred me to another hospital for surgery. The operation wasn't a great success and now my local hospital is looking to farm me out somewhere else so somebody unattached to my district can take on the case once again.

All this despite my real wishes, which are to have the cause of this particular complication fully understood prior to any decisions on treatment (as they indeed admit it is not, as yet) and only to have more surgery as a last resort if there are no other credible options left.

Despite my expressing this clearly at each consultation - assuming it to be understood, on obtaining copies of the consultation letters to my GP (which are being sent out to other clinics who may take my case on), I find these mention surgery alone with no mention of my wishes to be more conservative if the situation allows. None at all mention I do not wish to proceed any further without being fully informed of the underlying features which have lead to present circumstances.

Great, innit? My local hospital guy's views went something like this;

"I realised yours was a complex case, and my intervention would probably have b*gg*r*d you up. So I send you to ***** ***** and he b*gg*r*d you up instead. I'm glad he did it and not me, that's why I referred you to him!
You were probably better off not having surgery in the first place, patients with genetic problems like yours are now discovering surgery simply gives them a different set of problems to contend with."

Tell me about it.

But the trouble is, if this is my opinion, I am an un-enlightened loon, despite being the poor sod living with the results of their more 'enlightened' intervention.

As a patient I begin to wish the medical profession would get a shake up from somewhere, although I would prefer respect for changing needs of the patient and not politicians ideals to be the driving force behind this.

In the current state, you take the advice of one, only to have another admit after the event it was a bad idea. But you can't act on that, because it's only *opinion*. In many other areas of life this is simply not the case anymore. At present I'm sure medicine regards itself as more than a service industry, but the time when doctors could shroud their profession in mystery has long passed. The patients just aren't compliant anymore.

Try questioning your doctor over any uncertainties in your condition. Getting him to admit there are things he cannot answer and chances are he will get most uncomfortable. This is what I cannot understand about the medical profession - we all know doctors did not invent the human body, nor is medical science a complete science. Yet some 'esteemed' doctors have great trouble remembering this, likely not with good grace either. Patients today are not the patients that perhaps the profession is really trained to treat. Yet this affectation is one that I understand is largely traditional - if the patient questions too closely, they are likely to be put in their place.

It doesn't help with politicians striding into the melee, but unless the medical profession responds to the fact it is, whether higher ideals are attached to it or not, there to serve people, then surely a practice overhaul of some sort is long overdue?

a new impairment

2004-09-28T13:11:00.000+01:00

i've done somethin stupid.

last week i bought a new wrist brace that said it was suitable for people with neoprene allergies.

they forgot to add 'all except agent fang' at the bottom, so after one night of very decent sleep because my wrist was supported, i woke up to a little bit of a rash. so what, i thought. put some cream on it. got on with things.

it got a bit worse. so what i thought, and applied a bit mor cream. if you've ever hada severe allergic reaction you'll be nodding about whaty happened next.

excuse my cr@p typing. combination of left hand, piriton drowsiness and poor-me-ish ness. i'm not goin to correct every mistake. please stay with me.

within a few hoursw i became the embarrased owner of an arm that looked like something off a Dr Who set.

it blistered. it glowed. it throbbed.

i told mr fang to shoot me if I started to grow antennae.

life sure is different with one hand in the air. no-one has given me a biscuit though. and i spent 5 whole minutes trying to piut a sock on this morning - before realisding IT WASN'T EVEN MY SOCK.

so now i am at home with it up in the air (cos its swollen, gotta keep it elevated). mr fang keeps yelling "YES?" at me, like i am a kid at school with my hand up. and I can't put it down for long cos it hurts. bugger. so thats a quota of 2 legs and one arm (plus brain, being drowsy) out of comission. only my left arm is completely working. and i'm still here.

daytime tv is a mixed bag as usual, although i'm slowly being hooked into neighbours, dammit. isn't that izzy a right cow? the rash of get-a-new-house-here-abroad-anywhere-change-your-life tv is appalling. for those that like where they live there's antiques-bargains-who-cares types of shows. theres even a car-boot-for-the-ones-who-can't-afford-to-buy-antiques-or-new-houses types of show. philip schofield and fern britten make a good team. richard and judy are loosing their sparkle over on channel 4, i fear, although it could be my sour grapes on not getting on 'you say we pay'. and anne robinson has definitely gone under the knife.

worst of all has got to be that show where they go round hospitals looking for victims for entertainment. is entertainment really watching some poor sod have a camera sent up his arse? do we need to know whats up there? its a good thing i have to keep an empty stomach for my antibiotics. no wonder theres so many wackos auditioning for the x factor. which i'm only watching for sharon osborne, by the way. she rocks.

gotta go. its time to grease the alien arm. i'm tryin to keep cheerful. what new mutation of skin will await me today, i wonder?

Pottering Syndrome - It Could Be You

2004-09-09T15:22:00.000+01:00

I have pottering syndrome. It's a complication of Having To Rest... in that I need to, but I'm really cr@p at it. I've just gotta get up and do this, that and the flippin other. And before I sit down, I've just go to... write my blog.... make a phonecall... e-mail Mr Fang a shopping list... make a trip to the freezer for ice-cream... dust the skirting board.... go and see what's just been dropped through the letterbox... rummage around for a book for when I finally sit down.... remember there's an article in yesterdays newspaper it would be nice to read - got to go and get it before I sit down... got to get a drink first... might be nice to snack on some fruit whilst lying down - hence another quick trip to kitchen... might as well put the washing machine on... oops, left washing in bedroom... answer the phone... blah... blah... blah...

Sit down. Ahhh.

Relax.

Oh bugger, forgot to do washing up. Mustn't burden Mr F anymore than usually do, will just pop to kitchen and do dishes.

Pottering Syndrome is very serious.

AF

Silly Songs

2004-09-08T19:22:00.001+01:00

An occasional subvertive feature. This time Liam Lynch's "United States Of Whatever" gets the Fang treatment. Sing it loud, brothers and sisters!

The NHS Of Whatever

I went to the hospital reception,
They were, like, all “ewwww”
And I was like, “whatever!!!”

Then this nurse comes up to me and she’s all, like,
“Hey, haven’t you got special needs?”
And I’m like, “yeah, whatever!”

So later I’m at the physiotherapy pool
And this physiotherapist comes up
And she’s like, “awww”
And I’m like, “yeah, whatever!”

Cuz this is my
NHS of whatever!
And this is my
NHS of whatever!
And this is my
NHS of whatever!

And then it’s 3am
And I’m the corner, wearing my leather
So I ring community transport, and say, “I thought you were coming to pick me up?”
And they’re like, “yeah… whatever!”

Then I’m at surgical appliance clinic
He says to me
“ah thought ah told you to wear those braces…”
And I’m like, “yeah? Whatever!”

And then up comes the consultant
I’m like, “Yo, dude. What’s up?”
He’s, like, “nothin’”
And I’m, like, “that’s cool.”

Cuz this is my
NHS of whatever!
And this is my
NHS of whatever!

AF

Possessed by Bob Ross

2004-09-06T14:49:00.000+01:00

As well as my secret disability-related activities, I teach art, for a bob or two. But not this Bob. Allow me to explain. Two of my students have become possessed by a slick daytime TV artist by the name of Bob Ross.

Whilst I have nothing personal against the (late) Bob Ross, (no – stuff it, I’m lying, I hate his work and everything he stands for) I now have an explanation as to why, inexplicably, they have demonstrated the desire to paint evergreen trees and lakeside 'shacks' in every art session they have attended for the past year.

After a shack and evergreen tree ban imposed by myself last week, one of them confessed that all he wants to do is paint "like that white bloke with an afro off the telly". Further probing led him to spill the name 'Ross'. Bob Ross is apparently incumbent on Sky TV most mornings, although I haven't had the pleasure, being on modest earnings like many others of my profession.

Internet investigation this morning has revealed the true nature of the beast, leaving me aghast at the sheer volume of wooden shacks, evergreen trees, lakes and other Harbingers of Cheese at such volume as I have never before encountered, (even though my Nana owned both ‘The Dusky Maiden' and ‘The Crying Child' - or was it ‘The Pissing Boy’? I can't really remember).

I am trying to reconcile the fact that although this Bob Ross is not what I would personally subscribe to as 'good art', the students who attend my class do so as part of a day-centre program - and are NOT there to be bullied into being culture vultures, nor to be ridiculed for simple pleasures like painting indescribably kitsch landscapes. (Although I will draw the line at encouraging them to spend their cash on the somewhat extensive range of specialist paints and brushes this Bob Ross cult seems to insist are the only instruments capable of truly emulating the master...).

My dilemma is simple - I should surely go in there and speak calmly, objectively, knowledgeably, convincingly and without bile on this, attempting to steer them away gently, but what I fear what will actually happen is, on the mention of Mr. Ross's name, or the sight of a slickly painted evergreen, my head will spin a full 360 degrees and fire will pour from my eye sockets. My students don't really deserve this.

Help me someone please.

AF

Biscuit Sinner?

2004-09-06T14:41:00.000+01:00

I go to a meeting regularly where the patronising woman who hosts it always puts the biscuit plate down right in front of me - almost like she's making a point to be EXTRA SPECIALLY nice. (And they are very good biscuits, Marks and Spencers ones, or those posh little Italian ones. Sometimes there's even chocolate mini-rolls.)

Now, I do in return make a point of offering the biscuits to everyone at the table, just to make sure they're aware I do not, in spite of this lady's actions, consider I have any more right to the biscuits than anyone else in the room.

But people are too flippin' polite in this country and nobody, despite her obvious efforts to buy nice biscuits, makes free with this biscuit bounty - so it sits, beautifully presented, sometimes for hours, untouched, unappreciated, undevoured…

Recently I have begun to wonder whether this lady is not, as I have previously suspected, being patronising towards me because I am disabled, but simply sees in me a kindred soul, who appreciates a good biscuit. Perhaps she is saddend by the other meeting participants lack of biscuit interest. And it would not take an expert to note my impairment has nothing to do with my appetite, nor does it effect my weight. I do not look starved.

So last time we all met, the biscuit plate appeared as normal, pointedly in front of me. I offered, profusely, several times - and met a stonewall of no-thank-yous. So guess what? I ate all the biscuits! Every Last One. As time passed, with no other interest forthcoming, I ate the mini-rolls too!

As much as I tell myself it was only biscuit appreciation or good manners not to offend the hostess, in my heart I know I cracked and put biscuits before my disability pride. (Seriously, I did feel pretty terrible)... does that sound right to you?!

Constant pondering upon this act has only galvanised my guilt. Next time the biscuit plate appears in front of me I am resolved to tell her straight I do not like 'that sort' of biscuit. I shall push the plate to the middle of the table where nobody can touch it.

I thought it was a small sin, but perhaps it was more like the tip of of a big Disability Pride Iceberg.

Am I the only one with a stain on my soul, or are there others out there who have similar sins to confess?

AF

Crawlies Vs. Crips

2004-09-06T13:07:00.000+01:00

I never used to be wary of moths... until I became disabled. Months at a time of being stuck in bed meant not being able to leap around and swot the little buggers, or, ahem, escort them outside. Crane flies are just as bad, if not worse, as they are unlovely and look like flying spiders. Don't make this comparison to anyone who hates spiders, unless you want to give them a phobia about crane flies too. (Now, don't say I never give you nuffink...)

Lying in bed at night, listening to them creep, flutter and buzz. Under the bed. Across the ceiling. Urrgh.

Aparently it's not uncommon for disabled people to hate flying insects. I know this because I have questioned many of my friends on the subject. The general concensus is that if you can't move around enough, or for other reasons unique to your particular situation, can't do anything to reach, splat or expel them, you become more sensitised to their presence. It's something you can't control - not that I'm saying disabled people are control freaks, of course... we just like things to be right, and our right is often different than somebody's elses - but I digress.

Gadgets are my salvation, although I will briefly mention other techniques I don't advocate you try at home, unless you are suicidal or have no feeling in your hands - in which case try at your own risk.

Bug Katchas.
These are great. They're little plastic pyramid things on the end of a long stick. Various doorstep botherer cataloques carry them. The idea is the bottom of the pyramid thingy is a trapdoor that slides open and shut (still with me here)? You place the pyramid, trapdoor open, over the nasty, then twist the katcha closed, then hold out of a window and drop the nasty outside (from a great height if you're not sure if it flies and want to find out). Of course, if a breeze catches it or it has wings, it lives to terrorise you another day - so may pay another visit in future.

Drain guards. I wouldn't pay for these as flying nasties are my main fear. But they sit over the end of the pipe your bath water drains out of, being opened by the force of the water and closed the rest of the time. They work on the principle spiders won't be able to crawl up the plughole. But when did those long legged terrorists ever play by the rules?

Sticky papers. Not bad. They work, but put you off your dinner. A good method if you're trying to lose weight. The "AF Visit The Flypaper Before Dinner Diet". You heard it here first.

Sprays that discourage nasties. Again from doorstep botherer cataloques. As if. Any nasty worth it's visible leg hair and biiig buggy eyes would spit on this method!

At Your Own Risk

Lighter fluid. Neat, it appears to shrivel them up alive. Only for the most sadistic. I learned this technique when working in a graphics studio, where they use it to dissolve glue after paste up blunders. Except now they probably use computers for paste up... that is, if the company survived into the electronic age - and didn't go up in flames after their staff habitually chucked around what is basically a flammable excelerant to kill stuff in which was probably the grossest manner I have ever, ever seen.

Lighter and flammable aerosol. This could backfire and blow up. But not always, which is why I'm able to bring you this blog today. Weigh up your own odds. If you're feeling lucky, aim the aerosol spray at the nasty, then light the spray (keep a couple of inches away from the can), and frizzle it into oblivion. There's very little in the way of remains, and is the number one choice for things that hang from the ceiling, thus preventing you from killing them by a sharp whack against a hard surface. Once I was sleeping when Mr Fang discovered a nasty hanging from the light... a gentle whoosh was all I heard before returning to my slumbers. If you're unsure, rent Dog Soldiers on video and watch how Sean Pertwee does it before going ahead. He's a master, that man.

If I have helped some disabled person somewhere to fight the menace of nasties by writing this, then I have, in these early days, already proved the value of this humble blog.

AF

The Deviant Lid Flipper

2004-09-06T09:14:00.000+01:00

A necessary ritual I must always perform when choosing things that have to be opened is - lid flipping.

Stuff that is difficult to open causes unnecessary stress in my life - so I must study them, holding, opening and closing any product before purchase, to answer the following questions:

Can I flip it open with one hand?

Can I grip it at the same time?

Could I do this with wet hands?

Could I do this when my head is upside down and I'm showering/washing my hair?

What about a combination of the above, coupled with (generally legal) substance side effects?

Which leads to:

Am I likely to knock it over (yes), and when it hits the carpet, what is the chance of gross spillage from the open top?

...and ethically:

Have bunny rabbits had the stuff rubbed into their eyes? (if yes, replace on shelf)

....and less crucially:

Does the container look stylish?

It's important to remember You Can Be Disabled and Stylish.

Obviously this involves a certain amount of study. Pick it up (grip testing), read the atrociously small writing on the back (bunny cruelty check, not to mention the struggle due to a slight decline in my outer retinal latice), and, of course, the lid flipping. It can take a while, but its a small price to pay on the days when you have to be busy busy busy. "i'msorryismellihadproblemsopeningmyshowergelthismorning" does Not make for a slick business woman.

Unfortunately, when you are disabled person, spending time looking at things in a shop may lead staff to wrongly assume that you are too thick to actually know what you want, or worse, that you are a deviant of some kind. This causes all sorts of problems, detailed as follows:

Staff/Security: Can I help you madam?

AF: No.

SS: Are you sure?

AF: Yes

SS: Quite sure?

AF: YESTHANKYOUJUSTBROWSINGTHANKYOU

SS: Call me if you want anything lifted down from a higher shelf, won't you?

AF: YESTHANKYOU

By this time I am getting twitchy. Security staff are very attuned - not just to disabled people's ligitimate needs - but to the fact that if you're disabled, with plenty of space to hide goods down the side of your wheelchair, scooter basket or the like, ample clothing, bags on your lap, etc, etc (not to mention being on benefits), there is a raised possibility that you may actually be out nicking. (I have heard this from several security guards and shop staff. It's an easy thing to discover - all you need to do is visit the right sort of nightclub - or get yourself a CB radio - find some, and ask them. I almost certainly guarantee they will tell you the same.)

Meanwhile, this unwanted attention is impacting on my lid flipping rituals. It changes the whole tone, so natually I begin to tense up, flipping the lids up and down more than once, looking (in their eyes), less like an innocent disabled woman trying to find a bottle that is easy to open, and more like a deviant waiting to seize the moment (and the goods), then escape under cover of disablement - what weaselly minded offical would stop a disabled person...?

Watch them as their gaze follows your progress. Watch the same members of the public mill backwards and forwards along the same aisles as you. Are they really members of the public or plain clothes detectives?

A little Time in Life gives you access to worlds usually hidden. Disabled people have the patience of saints, and we are great people watchers. Not that you'd ever go out nicking with this in mind... no, neither would I...

Flip, flip, flip. Read the back. Replace on shelf. Flip, flip, flip. Read the back. Flip again to be sure. Shower gels are the worst, although I have also experienced problems with dental floss. With dental floss you have to take pot luck because most of the containers are behind molded plastic. You can't flip before you buy. You just have to peer closely at the packaging to see if it looks likely or not. Flip, flip, flip. Read the back. Some of the flip top lids have a sort of 'second lock', where you can flip them open and closed easily, but click the top further down for security when transporting them. It's difficult to completely unflip from closed, but you can counteract this at home by not putting pressure on the lid after use, so it sort of semi clicks shut. These ones are ok, and when identified correctly, do not tear my delicate skin. The real problem here is that I like a bargain. If I stuck to the same product each time I wouldn't have to do this. But according to my profile in certain personality tests (Do You Have Millionare Potential? et al), it is a facet of my nature (apparently) that I have to go for the best deal every time. You can't fight nature, can you?

So, ritual over. Product in basket. Up to four weeks of living with the scent, the look of the thing on my bathroom shelf, the knowledge that I have not conciously contributed to the suffering of rabbits and the pride of finding the best value, most perfect flipping lid in the range.

And, not least, the knowledge that every time you go into the shop, you are going to see them, and put the wind up those bastards. All because you need a good flip top lid on your shampoo and shower gel.

AF

In the beginning...

2004-09-05T22:51:00.000+01:00

...Agent Fang found out there was a new alcoholic beverage on the market that seemed to have been named after the action of a finely tuned wheelchair on a smooth, flat floor... (Bailey's 'Glide', FYI)

....so the agent, for purposes of research, drank several of these beverages, and saw that they were goood.

And on that fateful night, as a result of this over-consumption of said alcoholic beverages, Fangworld was born.

I'm not promising anything, mind...

AF