Naked Truth

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

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?

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

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!

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?

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

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!