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.
Friday, October 27, 2006
Thursday, October 26, 2006
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.
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.
Monday, October 23, 2006
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.
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...
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...
Monday, October 09, 2006
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.
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.
Monday, September 25, 2006
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.
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.
Friday, September 22, 2006
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!
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!
Tuesday, September 05, 2006
Second Dog Syndrome
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?'
Wednesday, August 30, 2006
Keep calm
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).
Wednesday, August 09, 2006
Running away very slowly
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.
Tuesday, August 01, 2006
PLEASE don't let yourself in!
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?
Friday, July 28, 2006
itunes quiz
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?
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?
Wednesday, July 26, 2006
The wonders of nature!
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.
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.
Monday, July 17, 2006
Just shopping, like you do
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.
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.
Tuesday, July 11, 2006
Monday, July 10, 2006
Up the alley, round the corner...
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!
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!
Friday, June 30, 2006
You Better Shape Up
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.
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.
Wednesday, June 28, 2006
Happier things
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.
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.
Tuesday, May 30, 2006
Back to Reality
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.
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.
Thursday, May 18, 2006
Nag for Victory!
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.
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.
Friday, May 05, 2006
A little comment confession
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.
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.
Monday, May 01, 2006
BADD and Proud
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?
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?
Wednesday, April 19, 2006
Tuesday, April 11, 2006
Keep Those Human Weeds Off The Green
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.
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.
Monday, April 10, 2006
Show Us The Toilet
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?
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?
Wednesday, March 29, 2006
A Sad Start To 2006
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.
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.
Friday, January 20, 2006
Whale in London
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.
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.
Monday, January 16, 2006
Farewell, My Spoon
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.
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.
Friday, January 13, 2006
New (Average) Feet! Part 2
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.
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
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...
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...
Wednesday, January 11, 2006
A Happy Doctor
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.
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.
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