There are days when my food intake ranges from the sublime to the ridiculous. In all honesty, it has aways been this way even before I had trouble walking to the fridge. Since I became a wheelchair user (and sometime hobbler in the house), as the cheery, take-the-piss sort of attitude to my disability has set in, I don't always notice how my state of being impacts upon the sort of weird food combinations or consumption methods I regularly employ.
On the very worst days, I don't eat regularly or at all, until Mr F is around. This isn't as bad as it sounds - I'm not an early riser, so at the most I miss 'brunch', and then Mr F is there and feeds me up in the evening. Upstairs we keep water and fruit, so I can snack if I want. This scenario is all to do with the stairs in our current house, which we hope we'll be leaving behind in a month or so. Some days I just can't be bothered with stairs. I like to have someone around when I'm doing them, especially on a bad day. Some days I can't be bothered with dressing either and (eek) more than a little wash, but because I was a lazy sod before being a crip, I sometimes haven't noticed I'm not doing it now because I am a crip.
To be brutally honest, even before all this happened, I was the sort of person who took a spoon to the fridge. This is a sort of ultimate feed-myself-on-a-bad-day tactic. What more do you need? Spoon. Fridge. It's simple, fast and effective. No washing up - except the spoon, which can be sneaked into the bowl to catch the evening washing up session... hence very little evidence of misbehaviour.
In fact, when I lived on my on in a studio flat, the fridge was at the end of the bed. Result.
Then there's unwrapping things. As I've got older and larger, I've switched from unwrapping pringles and biscuits (pringles for the savoury course, biscuits for dessert) to unwrapping fruit and salad bags more often. I try and ignore all the snooty health articles about buying organic stuff covered in soil because its better for you, as although I like the idea of eating organic things that have probably not been washed in chlorine (like many packet salads are) most days of the week they are just too high maintenance. Today I had a lovely meal of cherries, Nain's fruity oatmeal biscuits and white chocolate maltesers. Last Sunday teatime, 2 magnum ice-creams and a large whisky. Unwrapping. It's hard to see the bad in it sometimes...
Right from the beginning, I was a latch-key kid - both my parents worked full-time - and rather than being brought up to cook with real food, I was brought up to open packets and tins. Food in a hurry, whatever the reason. Whilst I have to agree this fast and lazy way has served me well into cripdom, when I moved in with Mr F (who was taught proper by his Ma), I didn't realise what a world apart from real food it was. For example, I hardly knew the difference between mash - made from real potatoes - and packet smash. Bless him, this really horrified him - especially my admission that packet smash was really nice to eat dry.
It is, though. And so is Bird's custard powder before you cook it, at the stage you put the sugar and mix.... oh, never mind.
A while back, I had to renew my DLA. Now, despite having no particular problem with my lazy food habits, I have enough of a sense to know it is not normally how 'normal' people eat. Consequently, I don't often mention it - somehow it's easy to just send it out into the blogosphere, although some of my closest friends don't know the full depths...
Mr F does, but more often than not it just makes him laugh (although sometimes in a sad way) and then cook us something yummy. However, a friend of mine had taken a job at a disability advice centre and as I'd recently had a full diagnosis she offered to go through the form with me to see if I could get a better award. Over the last year things have deteriorated slowly, so stuff Mr F used to do for me as a choice has slowly got to the point where we have begun to realise when he isn't there I don't or can't do it - stuff like, um, well, taking a spoon to the fridge rather than actually cooking, or not going downstairs at all - amongst other washing and dressing type shortcuts or non-starters that I'm sure many other crips reading will be nodding their heads at.
This meant I had to tell her. I wasn't prepared for her to be shocked though. We were doing the bit about 'what do you do to prepare a cooked main meal for yourself' and I'd just let slip about my spoon/fridge habits.
"Do you do that because you can't cook for yourself?" she asked.
"Well," I answered, feeling a little flummoxed "I was never really the sort of person who cooked in the first place..."
"Ye-es, but on a bad day, what would you do - nothing? Not even (with a little shudder) the spoon thing?"
"Nope, not even the spoon thing..." I mumbled, leaping on the chance to deny it. "But it's ok... I'm not exactly starving..." I wobbled a batwing to add a bit of, um, weight, to the argument.
She gave me a Look. "It's Bloody Not ok" she said.
And so it continued. Did I get dressed on a bad day? Well, no. But nobody sees me. It's not as though I physically couldn't - couldn't I? Did tiredness and pain count the same way any other kind of barrier did? Yes, she said, it did. It began to dawn on me she might have a point. Did that mean I didn't answer the door? Yup. But it's usually only chuggers or the god squad... Doesn't matter, she said, if your health stops you from doing it, it stops you. What if I lived alone? Had a month of bad days? I realised moving the fridge to the end of the bed and buying more spoons was not the right answer...
I am eternally grateful to her. With her advice, the award was better than it had been before and covered things like personal care for the first time. I can have Mr F's needs as a carer assessed as well, which we now recognise is long overdue.
Maybe, I said, I could even have someone in to do some coo-
"Stop right there" he said. "I do the cooking in this place. Just eat what I put in front of you, or what I leave in the fridge for you to put in the microwave - stair horrors banished all being well. It won't be as difficult when all you have to do is wheel into the next room, put it on your trolley thingy and take it to the microwave. A proper meal. And for God's sake, leave the bloody spoons alone."
Could this be the end of an era? An accessible house - will it change my relationship with food when I'm able to easily reach it without being exhausted doing the dreaded stairs - or will I still find myself raiding the fridge, spoon clutched in grubby hand, unwrapping the biscuits? They'll be quicker and easier to get to, of course...
I'll let you know.
Wednesday, July 20, 2005
Tuesday, July 19, 2005
Monday, July 18, 2005
Awful Peed-On Pillows
I have done it - finally got myself one of those swanky memory-foam, NASA approved pillows that are supposed to take all your aches and pains away and give you the most peaceful sleep you've ever had in your entire life.
Being a tightwad (Capricorn, of course), I didn't pay full price. I'd advise anyone who wants one to try to get it for less than full price, especially if you are on benefits. We didn't plan to go bargaining for expensive pillows, we merely stumbled on the solution, but it happened to work - and best of all fitted in with my habit of not paying full price for anything if I can possibly avoid it.
We were having a little trip out to cost bedroom furniture for our new bungalow (dunno if it's going to happen yet, but fingers crossed). The bed showroom had those memory foam products, so we tried the beds, the pillows, the toppers - the lot. I've been hankering after this stuff because it sounds gadgety and wonderful - but there's the rub.
The saleswoman came over with a little demonstration kit designed to show how memory foam is different from the ordinary stuff. She dropped a small heavy metal ball onto a small piece of ordinary foam. It bounced several times and rolled around a bit. When she dropped it on the memory foam, it stopped dead. Didn't even move the tinest bit. This was good, she told us - it showed how absorbing and cushioning the foam was.
Good? Unfortunately, when we tried the mattress, our arses did the same. Didn't appear to be able to move easily on the foam. At all. Undignified pushing and sinking occurred. It negated your every effort to move, slowing you down and absorbing the effort as you tried to push yourself to the edge of the bed. Oof. Y'see, thats the reason why they claim you don't move around as much in the night - it's not just because you're comfy - it's because unless your body put in a herculean effort that would wake you up - you bloody well can't.
Thank god I didn't just order one of these things based on the marketing guff. Didn't they ever think it might be a consideration for the same people it was aimed at? Those who have painful joints who want to make life easier in the first place? I'm sure super-fit astronauts had no trouble, especially in zero gravity, but reality has a bad habit of happening here on planet earth, especially to crips who listen to marketing claims. My niggly hip cursed me as I tried gracefully to heave myself off the bed without showing my pants.
We tried the pillows. They were better. The 'classic' shape was ok. It was like a 'normal' pillow - not those horrid weird shapes that are supposed to fit into your neck and give you the ultimate position. That's a rip as well. In vain I've tried those pillows that have this 'core support' inside- basically a couple of hard lumps of another type of foam... Mr F has taken to called them "awful peed-on pillows" rather than say 'orthopedic' pillow because of these bitter disappointments.
We decided to get one of the classic memory foam pillows anyway. The remaining shred of gullability in my soul for this comfort-promised land overtook me. Like the matresses, the pillow was heavy and solid feeling. The saleswoman went to get a new one - we had tried a demonstration model - and she commented it felt much lighter than the test one. We all had a feel. It was. These pillows are made from what the manufacturor calls 'shredded foam'. It appeared every other pillow other than the tester was sort of lumpy, with loose covers and uneven-looking. We started edging away until my bargain-lust kicked in and I asked if she would sell us the demonstration pillow for a discount.
Whereupon she did. If you want one of these (eeeek - expensive) pillows, then try it. Prod all the others, proclaim the display one is the only comfy one, and say the magic 'D' word. Ten per cent is about right but if the discount is less than a fiver, wheel away.
I have to say I like this pillow (I will be in trouble if I reject it), but it isn't what I expected it to be. It is heavy, and after putting your head on to it, you sink into the foam for a few seconds afterwards, giving a weird feeling of involuntary movement. If you turn your head, the foam behind it takes a few seconds to follow. Stupidly, but perhaps expectedly, I'd got the feeling of lightness and airiness from the marketing - not the unwieldiness and heavy density of the actual product.
Even if I wake up with an aching neck, I am still trying to convince myself that it is on a journey to re-educate itself on good posture, aided - not thwarted - by the Rolls-Royce of the pillow world. It is only aching because it has never had it so good, and it must adapt for the sake of gaining something better than it had before.
But here I fear the concept of 'better' may be subjective - by around 50 quid...
Being a tightwad (Capricorn, of course), I didn't pay full price. I'd advise anyone who wants one to try to get it for less than full price, especially if you are on benefits. We didn't plan to go bargaining for expensive pillows, we merely stumbled on the solution, but it happened to work - and best of all fitted in with my habit of not paying full price for anything if I can possibly avoid it.
We were having a little trip out to cost bedroom furniture for our new bungalow (dunno if it's going to happen yet, but fingers crossed). The bed showroom had those memory foam products, so we tried the beds, the pillows, the toppers - the lot. I've been hankering after this stuff because it sounds gadgety and wonderful - but there's the rub.
The saleswoman came over with a little demonstration kit designed to show how memory foam is different from the ordinary stuff. She dropped a small heavy metal ball onto a small piece of ordinary foam. It bounced several times and rolled around a bit. When she dropped it on the memory foam, it stopped dead. Didn't even move the tinest bit. This was good, she told us - it showed how absorbing and cushioning the foam was.
Good? Unfortunately, when we tried the mattress, our arses did the same. Didn't appear to be able to move easily on the foam. At all. Undignified pushing and sinking occurred. It negated your every effort to move, slowing you down and absorbing the effort as you tried to push yourself to the edge of the bed. Oof. Y'see, thats the reason why they claim you don't move around as much in the night - it's not just because you're comfy - it's because unless your body put in a herculean effort that would wake you up - you bloody well can't.
Thank god I didn't just order one of these things based on the marketing guff. Didn't they ever think it might be a consideration for the same people it was aimed at? Those who have painful joints who want to make life easier in the first place? I'm sure super-fit astronauts had no trouble, especially in zero gravity, but reality has a bad habit of happening here on planet earth, especially to crips who listen to marketing claims. My niggly hip cursed me as I tried gracefully to heave myself off the bed without showing my pants.
We tried the pillows. They were better. The 'classic' shape was ok. It was like a 'normal' pillow - not those horrid weird shapes that are supposed to fit into your neck and give you the ultimate position. That's a rip as well. In vain I've tried those pillows that have this 'core support' inside- basically a couple of hard lumps of another type of foam... Mr F has taken to called them "awful peed-on pillows" rather than say 'orthopedic' pillow because of these bitter disappointments.
We decided to get one of the classic memory foam pillows anyway. The remaining shred of gullability in my soul for this comfort-promised land overtook me. Like the matresses, the pillow was heavy and solid feeling. The saleswoman went to get a new one - we had tried a demonstration model - and she commented it felt much lighter than the test one. We all had a feel. It was. These pillows are made from what the manufacturor calls 'shredded foam'. It appeared every other pillow other than the tester was sort of lumpy, with loose covers and uneven-looking. We started edging away until my bargain-lust kicked in and I asked if she would sell us the demonstration pillow for a discount.
Whereupon she did. If you want one of these (eeeek - expensive) pillows, then try it. Prod all the others, proclaim the display one is the only comfy one, and say the magic 'D' word. Ten per cent is about right but if the discount is less than a fiver, wheel away.
I have to say I like this pillow (I will be in trouble if I reject it), but it isn't what I expected it to be. It is heavy, and after putting your head on to it, you sink into the foam for a few seconds afterwards, giving a weird feeling of involuntary movement. If you turn your head, the foam behind it takes a few seconds to follow. Stupidly, but perhaps expectedly, I'd got the feeling of lightness and airiness from the marketing - not the unwieldiness and heavy density of the actual product.
Even if I wake up with an aching neck, I am still trying to convince myself that it is on a journey to re-educate itself on good posture, aided - not thwarted - by the Rolls-Royce of the pillow world. It is only aching because it has never had it so good, and it must adapt for the sake of gaining something better than it had before.
But here I fear the concept of 'better' may be subjective - by around 50 quid...
Thursday, July 14, 2005
Renta-Crip
Apols for the lack of posts but I am rather under the weather at the moment. Hopefully it will get a little cooler soon and the twitching will stop.
Had to go out today for physio, and on the way home as I wasn't feeling... as bad as usual, so decided to go to big retail park near my home to buy a quick something for a wedding we're going to tomorrow.
Everything went smoothly (yes!), so clutching a couple of carrier bags, handbag and keys, I made my way back to the car. Only to be stopped by this very young man and what looked like a shy new girlfriend. He offered to help me, and bless him, meant well, but do you ever get people who just try too hard and terrify you?
I strongly began to suspect it was not for my benefit anyway, but for hers. You know, the 'I help cripples' thing. He loomed over into my personal space and asked (too loudly) if I needed help putting the key in the car door (um, no - being as I was obviously on my own and had driven on my own). I declined, politely, and went on to transfer myself into the car with his offering help at every little movement "Do you want me to put that bag into the other one?" (um, no, I can do that myself...) "Do you need help getting into your car?", (no look - I'm doing it) "Do you need help with taking the steering lock off..." (no - not seeing as I was able to put it on myself) and so on, along with the more usual "Do you need help putting the chair into the car..." stuff people often say. I don't think he was trying to nick the car or my bags, I just didn't get that vibe from him.
After each offer of help, he turned round to his girlfriend with a cheesy smile - she, on the other hand, started to look a little freaked out. How can I put it nicely? Oh, whatever. The guy was seriously oily. Glinting. Even his hair was oily, dark curls slicked back with shiny gel. And - whoa! the aftershave was a bit strong. A lot strong. I think he must have been watching those Linx adverts - where the guy sprays a 20p and chucks it into a fountain, then the girl, finding it irresistible, jumps in after.
After firmly but nicely declining any more close contact with his aftershave, he draped himself over his girl and they headed off in the direction of JJB Sports. He offered. I can't complain. I smiled thanks at her and she smiled back, but looked kind of awkward - possibly not from being near me (you do get a sense when it's you after a while...) , but more like she was a bit embarrased by his overwhelming persistence.
After a few breaths of blessed unscented air I got on with loading the chair in. It was so hot I sat with the fan on for a bit before driving off. I watched the couple as they walked away. She didn't seem keen to have him put his arm round her, and did a little skip forwards, then turned to watch him as he edged closer again, obviously intent on recapturing her. Another little skip, and he actually reached out to grab her sleeve. She waggled it to shake him off. I pulled out of the parking space slowly and drove past them, at which point he'd wrapped his arms around her waist and had buried his face in her neck. We caught each other's eyes as I went by. It looked as if she had a struggle on her hands. So much was I convinced of this, that in a reckless moment I gave her a sneaky thumbs-down gesture - then instantly regretted it. She might think it was to do with the helping thing rather than the boyfriend-octopuss situation and think I was an ungrateful beatch.
But she didn't - in fact she raised her eyes in an expression of long suffering - and gave me the thumbs down right back!
I think his days are numbered...
Had to go out today for physio, and on the way home as I wasn't feeling... as bad as usual, so decided to go to big retail park near my home to buy a quick something for a wedding we're going to tomorrow.
Everything went smoothly (yes!), so clutching a couple of carrier bags, handbag and keys, I made my way back to the car. Only to be stopped by this very young man and what looked like a shy new girlfriend. He offered to help me, and bless him, meant well, but do you ever get people who just try too hard and terrify you?
I strongly began to suspect it was not for my benefit anyway, but for hers. You know, the 'I help cripples' thing. He loomed over into my personal space and asked (too loudly) if I needed help putting the key in the car door (um, no - being as I was obviously on my own and had driven on my own). I declined, politely, and went on to transfer myself into the car with his offering help at every little movement "Do you want me to put that bag into the other one?" (um, no, I can do that myself...) "Do you need help getting into your car?", (no look - I'm doing it) "Do you need help with taking the steering lock off..." (no - not seeing as I was able to put it on myself) and so on, along with the more usual "Do you need help putting the chair into the car..." stuff people often say. I don't think he was trying to nick the car or my bags, I just didn't get that vibe from him.
After each offer of help, he turned round to his girlfriend with a cheesy smile - she, on the other hand, started to look a little freaked out. How can I put it nicely? Oh, whatever. The guy was seriously oily. Glinting. Even his hair was oily, dark curls slicked back with shiny gel. And - whoa! the aftershave was a bit strong. A lot strong. I think he must have been watching those Linx adverts - where the guy sprays a 20p and chucks it into a fountain, then the girl, finding it irresistible, jumps in after.
After firmly but nicely declining any more close contact with his aftershave, he draped himself over his girl and they headed off in the direction of JJB Sports. He offered. I can't complain. I smiled thanks at her and she smiled back, but looked kind of awkward - possibly not from being near me (you do get a sense when it's you after a while...) , but more like she was a bit embarrased by his overwhelming persistence.
After a few breaths of blessed unscented air I got on with loading the chair in. It was so hot I sat with the fan on for a bit before driving off. I watched the couple as they walked away. She didn't seem keen to have him put his arm round her, and did a little skip forwards, then turned to watch him as he edged closer again, obviously intent on recapturing her. Another little skip, and he actually reached out to grab her sleeve. She waggled it to shake him off. I pulled out of the parking space slowly and drove past them, at which point he'd wrapped his arms around her waist and had buried his face in her neck. We caught each other's eyes as I went by. It looked as if she had a struggle on her hands. So much was I convinced of this, that in a reckless moment I gave her a sneaky thumbs-down gesture - then instantly regretted it. She might think it was to do with the helping thing rather than the boyfriend-octopuss situation and think I was an ungrateful beatch.
But she didn't - in fact she raised her eyes in an expression of long suffering - and gave me the thumbs down right back!
I think his days are numbered...
Friday, July 08, 2005
Unkymoods is no more
RIP Unkymoods.
I thought Unkymoods were great. A free site where all you had to do was sign up and pick your mood of the day, which was then transferred to your blog. I usually changed my mood every time I wrote a new post, and sometimes if I didn't feel up to writing anything, would at least change the unkymood.
I've seen a few other mood sites, but none seem to have the fun and quirkiness Unkymoods did. To find another too soon would feel like being unfaithful - I was kind of hoping I'd click the link one day and all would be well. The artist guy who ran it did it free and for fun. The web needs people like that. It was a sad day when godaddy! parked its fat @rse there instead. No, I'm not gonna make that a link. Poosters.
Mr. Unky, if you ever set up your brilliant site again, I'll be back.
I thought Unkymoods were great. A free site where all you had to do was sign up and pick your mood of the day, which was then transferred to your blog. I usually changed my mood every time I wrote a new post, and sometimes if I didn't feel up to writing anything, would at least change the unkymood.
I've seen a few other mood sites, but none seem to have the fun and quirkiness Unkymoods did. To find another too soon would feel like being unfaithful - I was kind of hoping I'd click the link one day and all would be well. The artist guy who ran it did it free and for fun. The web needs people like that. It was a sad day when godaddy! parked its fat @rse there instead. No, I'm not gonna make that a link. Poosters.
Mr. Unky, if you ever set up your brilliant site again, I'll be back.
Monday, June 27, 2005
Object Lesson
I've been having some physiotherapy sessions to improve my 'core stability' (and hopefully see off a little pot belly which I need to curb before it really gets going)... This is the first time in my life I've had a physiotherapist understand my condition. We have read the same books, and are getting on quite well despite a few teething problems. Initially, I found the whole thing very emotional, and every little setback had me being weepy and wanting to give it all up. Now I'm realising that setbacks are the nature of the beast. I am so over the whole crying thing - until next time, of course.
This week, I have been an object lesson for some trainee therapists. They'd read the book and seen the photographs. Having a real live specimen do the moves in front of their very eyes brought forth a range of reactions - and there the physiotherapist and I had to stop them.
With hypermobility and hyperextensible skin, you can contort into some positions which others with a more - shall we say, average constitution - simply cannot manage. Many EDS/HMS people spent their childhoods grossing out their friends, not to mention audiences at the circus. I even saw someone who had to have been an EDS person on 'You've Been Framed' recently. It does my disability pride no harm at all to learn that people with similar genetic conditions to mine were circus performers. I even had a doctor tell me to run away and join the circus once.
But in one of the books we'd recently both read, a 'patient's perspective' chapter talks about being proud of a hyperextensible range of movement instead of finding it repulsive.... I'd never in my life thought of that idea!
When you do the contortionist act, either at school or to anyone who wants to know what hypermobility is, people will often react with disgust. This is not very self-affirming.
Instead, the book suggests we hypermobiles should be complimented for our range of movement - and this is what the trainess had to stop and consider. Patients do not want to be told they are gross, especially as they are probably in your care because of a problem and are feeling vunerable. Some of the postures are not horrible to look at - for example, a full foot arch is what ballerinas strive for - we can pretty much do it from first being able to walk. For any joint, although it may look sinister to someone who can't achive it, it is simply our bodies way of moving.
So, whilst I've been working on my exercises, my physiotherapist has been working on her compliments. We demonstrated for the trainees.
"What a lovely full stretch in that leg" she tells me. "Goodness grac- erm, I mean, what a long way, a fantastic long way back your fingers go," and so on.
It really feels good. I never realised I was missing it. To be the freakshow girl did have a sort of attraction, you sort of revel in it... So how can I put this new experience of being complimented instead of being an object of horror? It's like spending your life being poked with a stick, then someone comes up and tries stroking you instead.
Purrrrrrrr.
This week, I have been an object lesson for some trainee therapists. They'd read the book and seen the photographs. Having a real live specimen do the moves in front of their very eyes brought forth a range of reactions - and there the physiotherapist and I had to stop them.
With hypermobility and hyperextensible skin, you can contort into some positions which others with a more - shall we say, average constitution - simply cannot manage. Many EDS/HMS people spent their childhoods grossing out their friends, not to mention audiences at the circus. I even saw someone who had to have been an EDS person on 'You've Been Framed' recently. It does my disability pride no harm at all to learn that people with similar genetic conditions to mine were circus performers. I even had a doctor tell me to run away and join the circus once.
But in one of the books we'd recently both read, a 'patient's perspective' chapter talks about being proud of a hyperextensible range of movement instead of finding it repulsive.... I'd never in my life thought of that idea!
When you do the contortionist act, either at school or to anyone who wants to know what hypermobility is, people will often react with disgust. This is not very self-affirming.
Instead, the book suggests we hypermobiles should be complimented for our range of movement - and this is what the trainess had to stop and consider. Patients do not want to be told they are gross, especially as they are probably in your care because of a problem and are feeling vunerable. Some of the postures are not horrible to look at - for example, a full foot arch is what ballerinas strive for - we can pretty much do it from first being able to walk. For any joint, although it may look sinister to someone who can't achive it, it is simply our bodies way of moving.
So, whilst I've been working on my exercises, my physiotherapist has been working on her compliments. We demonstrated for the trainees.
"What a lovely full stretch in that leg" she tells me. "Goodness grac- erm, I mean, what a long way, a fantastic long way back your fingers go," and so on.
It really feels good. I never realised I was missing it. To be the freakshow girl did have a sort of attraction, you sort of revel in it... So how can I put this new experience of being complimented instead of being an object of horror? It's like spending your life being poked with a stick, then someone comes up and tries stroking you instead.
Purrrrrrrr.
Tuesday, June 21, 2005
My Life As A Token Crip
Several years back I worked in a community arts organisation. I'd just finished Uni and was starting my working life as a disabled person. I'd been through the mill as a junior un-politicised crip with my Senior Citizen's art group (who all considered themselves able-bodied, but thats a whole 'nother article....). Every week I'd get cuttings from their newpapers promising extra strength vitamins on special offer, or occasionally, from the group's most eccentric member, a pomegranate.
In contrast, workshops with other disabled people meant I wasn't faced with a room full of people constantly trying to diagnose or cure me. I began to think working with other disabled people might be something I'd like to develop.
As time went by, word a bona fide crip was working for community arts got through to the local council, who paid our wages. Big Dogs in the main office began to ask me to occasionally sit on panels and advisory groups for the benefit of local disabled people. I was wide eyed and naive back then, was grateful to anyone who threw me a boon workwise, and had never heard of the phrase 'token crip', so I did it.
I have to admit here and now that I wasn't some kind of 'aware' assertive activist by any means. I was a civil service numpty who didn't have much of a clue, and shit-scared of offending the people who paid my wages (which were part-time due to my crip-ness). I just wanted to get paid the little money I (and others) thought I was barely capable of earning, thank-you-very-much (doffs cap). I was disabled, I was tame - all in all, it was a winning combination with my employers.
Plenty of times, the meetings and ideas panels would be little more than a back-patting exercise that had little appeal to the local disabled community - maybe it didn't go far enough to meet their needs or interests, or wasn't widely accessible, or not enough money was spent on publicising it. This wasn't always a bad outcome for the council - a backdoor benefit of these failure was a good reason not to spend any more time or money funding another, or sometimes, evidence that disabled people weren't particularly interested anyway. As long as rumours of its short life got into the council's newsletter, they could be seen to be 'doing something' regarding their responsibilities and targets for inclusion. I began to stop feeling optimistic when something I'd been a panel member on suddenly disappeared without trace, or people I'd met through community arts went on it and told me how awful it was. I felt guilty, started questioning whether I was selling people down the river by turning up to things and giving my support when they were well short of equal access to arts in the area.
My little insulated crip-work-boat was floating closer towards the iceberg of reality... how do you bring about change when you being to see things differently?
The worst of these meetings, the final wake-up call - and most bitter of my regrets, was to sit on a county panel who were handing out funding to small local groups to provide arts activties for disabled people. My boss, who was a bit deaf in one ear, (and so a desirable trophy for these things too) was supposed to go, but her boy fell out of a tree and banged his head. I went in her place.
At this particular meeting there was a thousand pounds to allocate to local disabled groups in a small, rural area up in one corner of the borough. It was the kind of gentle, but totally banal place where entire families of people lived, never left, then quietly died. But it had been earmarked for 'disability arts' funding. Frankly, whatever or whoever got the money in that marginal place wasn't going to get the council people any admiration or kudos, and they weren't in any disability arts networks who would give them credit for allocating the money well, so they didn't really care where it went. Strictly duty for the less fortunate, ladies and gentlemen.
Unfortunately, for any discreetly burgeoning disabled talent in that place, there was one group in the district who were front runners to get the money. They were a small group of disabled people who ran an arts magazine, feted as "by disabled people for disabled people". This is a phrase that generally means good things, so I relaxed - until they showed me copies of the magazine.
It wasn't actually a disability arts magazine in an informed sense of the word. The people from the council didn't know this, and neither did the people producing it. I was only just beginning to subscribe to DAIL magazine , but even so, I got the feeling something wasn't quite right.
What it actually was, was a magazine for a group of friends in the area who were disabled. Nice for them, but only for them and their families. I'm not saying this sort of project shouldn't get support too, but disability arts money is disability arts money. Drawings of dogs, poems to dogs, about dogs, budgies, cats or fish, photographs of cats, and more cats, even disabled cats, ain't disability arts.
This time, I thought, could be a turning point. I could speak out, question, change minds! Help make sure the money got allocated to true, red-blooded disability arts projects. My first strike for the awakening activist inside!
It didn't go as planned... I took a deep breath.
What was disability arts all about? I started by asking them if they knew. "This is it!" they said, shaking copies of the magazine at me "It's by disabled people for disabled people, isn't it?"
"Y-es," I said, "but it isn't disability arts. Look at the content. It's about their pets, mostly... and some puzzles, and some nice drawings, but none of them are about disability..." this trailed off into a kind of silence where I could feel horrified vibes seep towards me that whispered "This woman is insulting cripples...."
I fought for some poise. Like a poker game that suddenly gets serious, stacks of silence built up in the air. The action was back on me, but nobody thought I had a hand worth playing. This is bad news whatever the game. Your opponents will stomp all over you.
I rallied. "What I mean is," I said, fighting for some eye-contact "this magazine is recreational pastime stuff, things like pets, recipes, puzzles, advice on buying computers (a truly mind boggling article about 'how the internet is accessible TO YOU' that included a diagram of a computer workstation with labels pointing to 'mouse', 'desk' and 'chair', and a little statement underneath saying how they couldn't give specific advice because you had to get the right thing for you, which might be difficult if you were disabled....) I held it up.
"This is the most disability specific thing in the whole publication, but it doesn't contain any real information that helps disabled people specifically."
(Another whole other blog entry is quality in disability arts It shouldn't follow that if disabled people do something that isn't very good, everyone should pretend it's brilliant so not to upset any feelings - another hurdle with this, although I wasn't brave enough to go on and say it at the time)...
Blank looks. I was on thin ice, starting a long skid sideways.
"Look at the content," I reasoned "This isn't about disability." Blank looks. "It's the same sort of things any group of people might write about - it could be by older people, kids, any group of friends - which is nice, don't get me wrong - but it's not about their experiences as disabled people. This is what disability arts is, and its not disability arts."
A frosty silence now gripped the room. A radiator shook noisily. I thought I could see the surprise on people's faces that I'd said anything at all. A couple of people broke embarrassed little smiles, raised eyebrows - as though they were dealing with a child. I felt totally, utterly alone. They didn't want to hurt me, but I was so far behind on this it someone was going to have to put me straight.
A big, flowerclad housebrick of a woman took control with another of those little smiles.
"These are very disabled people, who write this magazine as a way of forgetting their problems," she said carefully. "We think it's brilliant they've managed to get this far - some are real characters!" She gave another little laugh and sat back. Uh-oh. I was messing with real characters!
I paused, which was a big mistake. Like a well-honed pack, a youngish man lept into the gap.
"We know it has its shortcomings," he said in an ever-so-reasonable voice, rubbing his nose fiercely, (and a little self conciously, I thought), "but it's not our job to judge these people. They are making the best of it, and at the end of the day, they are an active group who really want this money. I must admit," here with a bit more more nose rubbing, "that I had a conversation with their editor yesterday - and," here he looked around to make sure he had his collegue's support - "I might have hinted to her that the decision was... in the bag, um, well, that is to say, I told her no-one else was in the running. And she has promised to improve the quality by publishing the next three issues In Colour."
"Oooh, that'd be lovely" another lady chimed in "I could really see that looking pretty! They'd really love it..."
I could feel my junior self sagging. I didn't know where to go with my argument without sounding like I was depriving these poor very-disabled cripples and taking away their one joy in life. I was being a jobsworth, invited into their decision making process to see how supportive they were of disabled people, and bloody cheek upstart that I was, I was biting the hand that fed me, getting all nasty and political, and standing (well, sitting) in the way of other disabled people's artistic pleasure.
How could I deny them that small pleasure?
I managed a little croaky noise. "Quality is important..." I said, one hand resting limply on the magazine's cover.
"Yes, fair enough. But this is it. They are all disabled..." said flowery housebrick woman, clanking a heavily braceletted hand on to her own copy. "No-one else has applied for this money anyway, so we if we don't give it to them, no-one'll get it and it'll be carried over in the accounts to Christmas, when they'll only apply again anyway." Her eyes narrowed. I had nothin'
I managed one strangled last gasp under the weight of the glares
"Ok then..."
And left that odd rural office with the sense I'd lost...
I learned the hard way what a useless, thankless and souless exercise it is to be the tokenistic-crip-panel-whore. Say yes to every panel who ask, who only want you only because you walk funny, who will be horrified if you try any big moves - like sentences. Or reasoning. Or opinion. Just eat the biscuits like a good crip and be grateful you're being paid to be the mascot...
I stopped doing panels after a while. As I began to speak out, sometimes getting it right, sometimes getting it wrong, I began increasingly to feel like working within the system only took you so far. Could I really change things by going to a meeting and ranting at people who simply didn't understand, however good their intentions were? On occasions people looked at me if I were mooting the drowning of puppies. If you want to bite hard, it's hard to simultaneously have your neck in the noose.
However, it wasn't a completely useless experience. It made me decide which side of the fence I wanted to be on. Mine. Ours!
In contrast, workshops with other disabled people meant I wasn't faced with a room full of people constantly trying to diagnose or cure me. I began to think working with other disabled people might be something I'd like to develop.
As time went by, word a bona fide crip was working for community arts got through to the local council, who paid our wages. Big Dogs in the main office began to ask me to occasionally sit on panels and advisory groups for the benefit of local disabled people. I was wide eyed and naive back then, was grateful to anyone who threw me a boon workwise, and had never heard of the phrase 'token crip', so I did it.
I have to admit here and now that I wasn't some kind of 'aware' assertive activist by any means. I was a civil service numpty who didn't have much of a clue, and shit-scared of offending the people who paid my wages (which were part-time due to my crip-ness). I just wanted to get paid the little money I (and others) thought I was barely capable of earning, thank-you-very-much (doffs cap). I was disabled, I was tame - all in all, it was a winning combination with my employers.
Plenty of times, the meetings and ideas panels would be little more than a back-patting exercise that had little appeal to the local disabled community - maybe it didn't go far enough to meet their needs or interests, or wasn't widely accessible, or not enough money was spent on publicising it. This wasn't always a bad outcome for the council - a backdoor benefit of these failure was a good reason not to spend any more time or money funding another, or sometimes, evidence that disabled people weren't particularly interested anyway. As long as rumours of its short life got into the council's newsletter, they could be seen to be 'doing something' regarding their responsibilities and targets for inclusion. I began to stop feeling optimistic when something I'd been a panel member on suddenly disappeared without trace, or people I'd met through community arts went on it and told me how awful it was. I felt guilty, started questioning whether I was selling people down the river by turning up to things and giving my support when they were well short of equal access to arts in the area.
My little insulated crip-work-boat was floating closer towards the iceberg of reality... how do you bring about change when you being to see things differently?
The worst of these meetings, the final wake-up call - and most bitter of my regrets, was to sit on a county panel who were handing out funding to small local groups to provide arts activties for disabled people. My boss, who was a bit deaf in one ear, (and so a desirable trophy for these things too) was supposed to go, but her boy fell out of a tree and banged his head. I went in her place.
At this particular meeting there was a thousand pounds to allocate to local disabled groups in a small, rural area up in one corner of the borough. It was the kind of gentle, but totally banal place where entire families of people lived, never left, then quietly died. But it had been earmarked for 'disability arts' funding. Frankly, whatever or whoever got the money in that marginal place wasn't going to get the council people any admiration or kudos, and they weren't in any disability arts networks who would give them credit for allocating the money well, so they didn't really care where it went. Strictly duty for the less fortunate, ladies and gentlemen.
Unfortunately, for any discreetly burgeoning disabled talent in that place, there was one group in the district who were front runners to get the money. They were a small group of disabled people who ran an arts magazine, feted as "by disabled people for disabled people". This is a phrase that generally means good things, so I relaxed - until they showed me copies of the magazine.
It wasn't actually a disability arts magazine in an informed sense of the word. The people from the council didn't know this, and neither did the people producing it. I was only just beginning to subscribe to DAIL magazine , but even so, I got the feeling something wasn't quite right.
What it actually was, was a magazine for a group of friends in the area who were disabled. Nice for them, but only for them and their families. I'm not saying this sort of project shouldn't get support too, but disability arts money is disability arts money. Drawings of dogs, poems to dogs, about dogs, budgies, cats or fish, photographs of cats, and more cats, even disabled cats, ain't disability arts.
This time, I thought, could be a turning point. I could speak out, question, change minds! Help make sure the money got allocated to true, red-blooded disability arts projects. My first strike for the awakening activist inside!
It didn't go as planned... I took a deep breath.
What was disability arts all about? I started by asking them if they knew. "This is it!" they said, shaking copies of the magazine at me "It's by disabled people for disabled people, isn't it?"
"Y-es," I said, "but it isn't disability arts. Look at the content. It's about their pets, mostly... and some puzzles, and some nice drawings, but none of them are about disability..." this trailed off into a kind of silence where I could feel horrified vibes seep towards me that whispered "This woman is insulting cripples...."
I fought for some poise. Like a poker game that suddenly gets serious, stacks of silence built up in the air. The action was back on me, but nobody thought I had a hand worth playing. This is bad news whatever the game. Your opponents will stomp all over you.
I rallied. "What I mean is," I said, fighting for some eye-contact "this magazine is recreational pastime stuff, things like pets, recipes, puzzles, advice on buying computers (a truly mind boggling article about 'how the internet is accessible TO YOU' that included a diagram of a computer workstation with labels pointing to 'mouse', 'desk' and 'chair', and a little statement underneath saying how they couldn't give specific advice because you had to get the right thing for you, which might be difficult if you were disabled....) I held it up.
"This is the most disability specific thing in the whole publication, but it doesn't contain any real information that helps disabled people specifically."
(Another whole other blog entry is quality in disability arts It shouldn't follow that if disabled people do something that isn't very good, everyone should pretend it's brilliant so not to upset any feelings - another hurdle with this, although I wasn't brave enough to go on and say it at the time)...
Blank looks. I was on thin ice, starting a long skid sideways.
"Look at the content," I reasoned "This isn't about disability." Blank looks. "It's the same sort of things any group of people might write about - it could be by older people, kids, any group of friends - which is nice, don't get me wrong - but it's not about their experiences as disabled people. This is what disability arts is, and its not disability arts."
A frosty silence now gripped the room. A radiator shook noisily. I thought I could see the surprise on people's faces that I'd said anything at all. A couple of people broke embarrassed little smiles, raised eyebrows - as though they were dealing with a child. I felt totally, utterly alone. They didn't want to hurt me, but I was so far behind on this it someone was going to have to put me straight.
A big, flowerclad housebrick of a woman took control with another of those little smiles.
"These are very disabled people, who write this magazine as a way of forgetting their problems," she said carefully. "We think it's brilliant they've managed to get this far - some are real characters!" She gave another little laugh and sat back. Uh-oh. I was messing with real characters!
I paused, which was a big mistake. Like a well-honed pack, a youngish man lept into the gap.
"We know it has its shortcomings," he said in an ever-so-reasonable voice, rubbing his nose fiercely, (and a little self conciously, I thought), "but it's not our job to judge these people. They are making the best of it, and at the end of the day, they are an active group who really want this money. I must admit," here with a bit more more nose rubbing, "that I had a conversation with their editor yesterday - and," here he looked around to make sure he had his collegue's support - "I might have hinted to her that the decision was... in the bag, um, well, that is to say, I told her no-one else was in the running. And she has promised to improve the quality by publishing the next three issues In Colour."
"Oooh, that'd be lovely" another lady chimed in "I could really see that looking pretty! They'd really love it..."
I could feel my junior self sagging. I didn't know where to go with my argument without sounding like I was depriving these poor very-disabled cripples and taking away their one joy in life. I was being a jobsworth, invited into their decision making process to see how supportive they were of disabled people, and bloody cheek upstart that I was, I was biting the hand that fed me, getting all nasty and political, and standing (well, sitting) in the way of other disabled people's artistic pleasure.
How could I deny them that small pleasure?
I managed a little croaky noise. "Quality is important..." I said, one hand resting limply on the magazine's cover.
"Yes, fair enough. But this is it. They are all disabled..." said flowery housebrick woman, clanking a heavily braceletted hand on to her own copy. "No-one else has applied for this money anyway, so we if we don't give it to them, no-one'll get it and it'll be carried over in the accounts to Christmas, when they'll only apply again anyway." Her eyes narrowed. I had nothin'
I managed one strangled last gasp under the weight of the glares
"Ok then..."
And left that odd rural office with the sense I'd lost...
I learned the hard way what a useless, thankless and souless exercise it is to be the tokenistic-crip-panel-whore. Say yes to every panel who ask, who only want you only because you walk funny, who will be horrified if you try any big moves - like sentences. Or reasoning. Or opinion. Just eat the biscuits like a good crip and be grateful you're being paid to be the mascot...
I stopped doing panels after a while. As I began to speak out, sometimes getting it right, sometimes getting it wrong, I began increasingly to feel like working within the system only took you so far. Could I really change things by going to a meeting and ranting at people who simply didn't understand, however good their intentions were? On occasions people looked at me if I were mooting the drowning of puppies. If you want to bite hard, it's hard to simultaneously have your neck in the noose.
However, it wasn't a completely useless experience. It made me decide which side of the fence I wanted to be on. Mine. Ours!
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