Yeah, yeah, oh-yeah, what condition my condition was in
To celebrate the additional pain being caused by my new physiotherapy program, and to rebel against the recent ruling against cannabis being used legally for the relief of chronic pain, I had a little foray into the world of herbally enhanced Cadburys Bournville Cupcakes this weekend.
I don't need to use cannabis regularly to relieve pain, nor do I think it the be-all-and-end-all to pain resolution, but it does occasionally reach places that nothing else is reaching. Getting stoned is also helpful occasionally just because I'm human and it's the early 21st century, so draw your own conclusions. It's been a crazy year so far.
I woke up this mornin' with the sundown shinin' in
I found my mind in a brown paper bag within
I tripped on a cloud and fell-a eight miles high
I tore my mind on a jagged sky
I just dropped in to see what condition my condition was in
My general philosophy is where drugs like this can be cultivated in small amounts for personal use, if that use is benefical and there is a proven medical condition present, then for god's sake, it's time for the state to back out. If it works, what's the sense in persecuting people who are not a threat to society?
(Yeah, yeah, oh-yeah, what condition my condition was in)
My neck was sore. My normally good joints (left elbow, left ankle, jaw) were threatening to flare, my neck - which for some reason I just can't stop tensing when I do my new exercises - was giving me royal gip, my right knee was grizzling, and I was just feeling a little tense generally. I need to get an accountant to manage my paperwork, and people who are good at maths sort of flummox me, and I'd set myself a goal of doing this before June. And now May is deciding to end, just when I was getting the hang of it.
I pushed my soul in a deep dark hole and then I followed it in
I watched myself crawlin' out as I was a-crawlin' in
I got up so tight I couldn't unwind
I saw so much I broke my mind
I just dropped in to see what condition my condition was in
As I may have said before, I don't seem to get addicted to stuff, so taking drugs doesn't seem any big hoo-ha. My codeine tolerance is usually way up, but the alternative is pain, so I'm cool with that. Opiates sit well with me. The best trip I ever had came from a large dose of morphine after bone surgery. I watched, possibly alert, as William Blake's muscular angels fought tempestous battles with evil-eyed devils on the wallpaper opposite my bed, as the nurse's bodies swelled and swayed like hot wax in lava lamps, and night and day raced around each other until 3 days later, when I was suddenly watching television and eating a delicious ham and mustard sandwich - the best I've ever tasted. You have to look at the alternatives in every situation, and in mine it was coming to terms with the fact that some doctor had just sawed off part of my shin and pinned it in little pieces under my knee. The hallucination was obviously the better way to get a bit of distance from the reality of the situation. I've not tried many other things, although I have a sneaking suspicion they would send me snooka-loopy, like a normal state Kelly Osbourne, possibly - who recently admitted in a Marie Clare interview "I don't like speed, and cocaine literally sends me fucking crazy... but I found I could hide (being on opiates) very easily." Everyone was worrying about Jack, and Kel just slipped quietly onto painkillers- as have several other top hollywood actors, making crip medication officially A list in the process.
(Yeah, yeah, oh-yeah, what condition my condition was in)
So - to the cakes. My deviant activity over the weekend amounted to eating 3 cupcakes, then watching 'The Big Lebowski' - (an excellent film and vehicle for this little interweaving ditty 'Just Dropped In (To See What Condition My Condition Was In)' by beardy Kenny Rogers). I then consumed some vastly inferior (but I ate 'em anyway...) milk chocolate maltesers - the white ones were nowhere to be found this weekend - eating some pringles - then some other things, having a little snooze, then waking up to watch a hedgehog on a nature programme go out looking for a girlfriend. At the point the hedgehog got his girl and started shagging her, I decided to go to bed before I started hallucinating (god-knows-what, Bill Oddie, probably), whereupon I put my ipod on shuffle and went to sleep, offically a criminal for the day. Woo-hoo.
Someone painted "April Fool" in big black letters on a "Dead End" sign
I had my foot on the gas as I left the road and blew out my mind
Eight miles outta Memphis and I got no spare
Eight miles straight up downtown somewhere
I just dropped in to see what condition my condition was in
Woke up this morning to find I'd slept a full 12 hours, with various sites of pain lessened and improved, and a resolution not to touch the evil weed for... oh, a good few weeks. My bowels and stomach are saying "What hit me, man?"
The reason I don't take cannabis regularly is not a moral issue, nor is it an effectivness issue, as it surely does work when the painkillers aren't helping. No - the reason I don't advocate regular cannabis use for myself is the most dreaded side effect I have experienced in all my legal and illegal drug use to date - the munchies. Cannabis will turn you into a gastro-demon. Under it's dreaded influence, no food is safe, no biscuit is hidden. Cannabis makes me gorge on pringles, maltesers, ice cream, pear drops, cheese, digestive biscults, peanut butter and strawberry jam, more cheese, and ice pops. And all that binging isn't good for my arthritis.
Quid pro quo, man, quid pro quo.
I said I just dropped in to see what condition my condition was in
Yeah yeah oh-yeaaah
Tuesday, May 31, 2005
Wednesday, May 18, 2005
Crip Logistics
I know the day is coming when I have to hand over my car keys (largely) to a support assistant. I say largely because I will do short distance domestic driving occasionally, but driving for my work will be done by someone else in future.
I often need to go out of town for projects now. This is a good thing for me as an artist, cos it gets me around and networking. It was something I had to decide to do, or not to do for career development recently - basically, stay local and work with organisations because they were close by and I was being a limited crip, or go large, and travel to more versatile opportunities and meet people. Not that I work in projects all the time, but if I want to be paid independently by funders like the arts council, I also have to be prepared to travel to their offices and events they organise so I can raise my profile.
Hence all the hotel rants springing up lately... there's more on the cards!
I'm ambitious. For a while, all that was really holding me back were the crip logistics of going places. I'd worry about long journeys, the driving, the staying overnight and pacing myself. At first I convinced myself instead I would be happy contributing to local arts things, painting or printing 'pretty fine art furniture' - souless contemporary art pieces people could hang on the walls of their trendy homes.
But I'm too much of an old tumb-thumping-whinge-bag of an artist to be really content doing this. I don't like begging people to look at my portfolio and be worrying about making regular profits. That bit in particular is hard to sustain if you have a fluctuating condition. Anyway, I'd rather make art that reflects my life, and as a crip I have a lot to say. Artwork that travels round for a while means I have a burst of activity, then I can flop for a bit. In the meantime it gets out and about so people don't forget who I am, and I sit at home in my dressing gown writing a blog and plotting the next one, hoping to make it less strenous - in October last year I truly went to bed so exhausted I thought I might die. It doesn't make for a long career to do that too often.
Disability Arts has got my heart and soul, and it's an exciting time to be out and about as a disabled artist. Sod trying to be in with the local snobby artists who look down on me cos I'm disabled. People are beginning to wake up to the fact disabled society has been under-represented in the arts and art history (in history and the human race too, I hear you cry...). The Arts Council is thinking seriously about supporting disabled artists properly. Like me! Just gotta go get it.
Now at this point, I should say re. Disability Arts -it is not a situation I can explain fully as part of these few musings. Politically there are a lot of ins and outs, right ways and wrong ones, and if you're interested you may be aware of these, or maybe if you have a growing interest you'll look for them. But for this blog entry understand that I intend to develop my career to be a part of this world, in fact I am already making progress, and I want it to continue. Crip logistics are not going to stop me - realise what a huge revalation this is - it's still happening long after I thought things would be sorted. Will they ever be? Possibly not. But for the first time I can say decisively I am in for the long haul. yes. Thinking big. National. International?
As any crip will know, organising your life can be complex. Around January time this year, I was seriously questioning myself as to whether to go onto Incapacity Benefit instead, in the light of fully understanding my condition and the prognosis. My doctor would have signed me of no problem. Stress free. That, versus making major changes - as I've already said, house, wheelchair, car, bed all have to happen - and on top of that, work. Mainly driving.
As I can't drive alone anymore, for an artist with an unpredictable, oddball career, imagining how that might work is a nightmare. My timetable isn't regular. I might need someone driving me for a week, a weekend, a couple of hours a day, one day a month for six months, overnight stops, and on short notice for conferences and the like. It always makes me laugh when I read about Mariah Carey and Jennifer Lopez having entourages, because this is kind of how I view the way I need people to work for me. My care needs in themselves aren't complex, so this person would be mainly a packhorse and driver. We'd spend hours together, so we'd have to get on - it would help if we had similar interests. Similar tastes in music - and similar attitudes to driving.
This has been one of my biggest stumbling blocks over organising somebody. I love driving myself. I don't want to sit and watch someone else do it instead. I'm shit at navigating, but I love speeding around places. I'm currently working somewhere that is a 120 mile round trip - much too exhausting, but also wonderful to be alone in the car, in the sunlight, driving fast, stereo on, ipod hooked up.
Music is the next big issue here. If I'm employing them and they're working for me, can I insist on my music being played? Would we have to share eartime? What if they liked, say, Brynn Terfel or Johnny Mathias (an old childhood nemesis)? The atmosphere could get nasty. I need Muse, White Stripes and Jeff Buckley - would it be cruelty if they didn't?
And the speed. Now, in some ways, getting off my speeding habit might be good for me. Not that I've got points or anything - my current car is a little supermini thing, 1.4 - basically, put your foot down, it goes. I know some men reading this might be laughing, but what the hell, I'm more of a town cafe racer than a motorway racer - the little car hasn't got the kick over 70 mph. But at town speeds, well, I can say with confidence some years ago I did an arts project with some boy racers in my town and I beat plenty of 'em off the lights. Yes. I was an honorary girl member by the end. I think it made me cool with a bunch of 18 year old chavs. Hmm. Because if I am speedgirl, and if my new driver is not, might it drive me a little bit round the twist? Overtaking stuff will not longer be my decision - what if my new driver is a granny? It will be best to interview / advertise on driving skills and not care needs, so I might avoid the granny factor there. But god, I'm just nervous we won't get on and they'll hate me, or I'll hate them, or there's a power struggle between me thinking I'm the boss because I'm employing them, and them thinking they're the boss because I'm a poor helpless crip who can't drive...
We'll just have to see how this one pans out. At least I can sack any insubordinate ones - because these are my crip logistics, and I'll be in control... at least that's the plan.
I often need to go out of town for projects now. This is a good thing for me as an artist, cos it gets me around and networking. It was something I had to decide to do, or not to do for career development recently - basically, stay local and work with organisations because they were close by and I was being a limited crip, or go large, and travel to more versatile opportunities and meet people. Not that I work in projects all the time, but if I want to be paid independently by funders like the arts council, I also have to be prepared to travel to their offices and events they organise so I can raise my profile.
Hence all the hotel rants springing up lately... there's more on the cards!
I'm ambitious. For a while, all that was really holding me back were the crip logistics of going places. I'd worry about long journeys, the driving, the staying overnight and pacing myself. At first I convinced myself instead I would be happy contributing to local arts things, painting or printing 'pretty fine art furniture' - souless contemporary art pieces people could hang on the walls of their trendy homes.
But I'm too much of an old tumb-thumping-whinge-bag of an artist to be really content doing this. I don't like begging people to look at my portfolio and be worrying about making regular profits. That bit in particular is hard to sustain if you have a fluctuating condition. Anyway, I'd rather make art that reflects my life, and as a crip I have a lot to say. Artwork that travels round for a while means I have a burst of activity, then I can flop for a bit. In the meantime it gets out and about so people don't forget who I am, and I sit at home in my dressing gown writing a blog and plotting the next one, hoping to make it less strenous - in October last year I truly went to bed so exhausted I thought I might die. It doesn't make for a long career to do that too often.
Disability Arts has got my heart and soul, and it's an exciting time to be out and about as a disabled artist. Sod trying to be in with the local snobby artists who look down on me cos I'm disabled. People are beginning to wake up to the fact disabled society has been under-represented in the arts and art history (in history and the human race too, I hear you cry...). The Arts Council is thinking seriously about supporting disabled artists properly. Like me! Just gotta go get it.
Now at this point, I should say re. Disability Arts -it is not a situation I can explain fully as part of these few musings. Politically there are a lot of ins and outs, right ways and wrong ones, and if you're interested you may be aware of these, or maybe if you have a growing interest you'll look for them. But for this blog entry understand that I intend to develop my career to be a part of this world, in fact I am already making progress, and I want it to continue. Crip logistics are not going to stop me - realise what a huge revalation this is - it's still happening long after I thought things would be sorted. Will they ever be? Possibly not. But for the first time I can say decisively I am in for the long haul. yes. Thinking big. National. International?
As any crip will know, organising your life can be complex. Around January time this year, I was seriously questioning myself as to whether to go onto Incapacity Benefit instead, in the light of fully understanding my condition and the prognosis. My doctor would have signed me of no problem. Stress free. That, versus making major changes - as I've already said, house, wheelchair, car, bed all have to happen - and on top of that, work. Mainly driving.
As I can't drive alone anymore, for an artist with an unpredictable, oddball career, imagining how that might work is a nightmare. My timetable isn't regular. I might need someone driving me for a week, a weekend, a couple of hours a day, one day a month for six months, overnight stops, and on short notice for conferences and the like. It always makes me laugh when I read about Mariah Carey and Jennifer Lopez having entourages, because this is kind of how I view the way I need people to work for me. My care needs in themselves aren't complex, so this person would be mainly a packhorse and driver. We'd spend hours together, so we'd have to get on - it would help if we had similar interests. Similar tastes in music - and similar attitudes to driving.
This has been one of my biggest stumbling blocks over organising somebody. I love driving myself. I don't want to sit and watch someone else do it instead. I'm shit at navigating, but I love speeding around places. I'm currently working somewhere that is a 120 mile round trip - much too exhausting, but also wonderful to be alone in the car, in the sunlight, driving fast, stereo on, ipod hooked up.
Music is the next big issue here. If I'm employing them and they're working for me, can I insist on my music being played? Would we have to share eartime? What if they liked, say, Brynn Terfel or Johnny Mathias (an old childhood nemesis)? The atmosphere could get nasty. I need Muse, White Stripes and Jeff Buckley - would it be cruelty if they didn't?
And the speed. Now, in some ways, getting off my speeding habit might be good for me. Not that I've got points or anything - my current car is a little supermini thing, 1.4 - basically, put your foot down, it goes. I know some men reading this might be laughing, but what the hell, I'm more of a town cafe racer than a motorway racer - the little car hasn't got the kick over 70 mph. But at town speeds, well, I can say with confidence some years ago I did an arts project with some boy racers in my town and I beat plenty of 'em off the lights. Yes. I was an honorary girl member by the end. I think it made me cool with a bunch of 18 year old chavs. Hmm. Because if I am speedgirl, and if my new driver is not, might it drive me a little bit round the twist? Overtaking stuff will not longer be my decision - what if my new driver is a granny? It will be best to interview / advertise on driving skills and not care needs, so I might avoid the granny factor there. But god, I'm just nervous we won't get on and they'll hate me, or I'll hate them, or there's a power struggle between me thinking I'm the boss because I'm employing them, and them thinking they're the boss because I'm a poor helpless crip who can't drive...
We'll just have to see how this one pans out. At least I can sack any insubordinate ones - because these are my crip logistics, and I'll be in control... at least that's the plan.
Tuesday, May 17, 2005
Begging For Toys?
I need a new chair. I need a new car. I really need an adjustable vibrating bed (neck injuries after car accident). I need a power trike like a four year old needs lollipops.
The approximate cost of a new chair, new car (cos they have to fit each other), new bed, and new trike (strictly for fun) is around 37,000 quid.
Oh, and I need to move house too.
I might get the chair through Access To Work, or at least 95% of it. I might use motability for the car (although Mr F dead against). Maybe my accident compensation will pay for the bed - but then again that sum would also include things like loss of earnings, so they'd be blown on the bed and not used for other essential costs those bastards don't seem to be able to claim for. That's another rant another time. We could go shared ownership on the house if the housing association don't take us in for accessible accommodation as per my medical letters. Detached next time, even if we end up in a bloody shed.
I might set up a begging website for the trike though. Nobody is going to have funding to buy me a trike, are they? Because lets face it, disabled kids get toys and treats. They're cute, they're dying, and they should have it, of course. But do you see any charities distributing fun stuff to disabled adults? Of course, there are some people who are the recipients of such things, but they are usually very, very disabled. I'd still argue that for your bog-standard living-privately on a low income crip, no one really dishes out for the fun stuff. You get what you need, sure (or not quite, I'm sure there are plenty of heads nodding here...I do know I'm lucky to live in the UK), but I bet there's too many of us who don't have the money to spend on fun accessible things... like trikes.
My mistake was visiting a mobility roadshow a few weeks ago and picking up a brochure from every single stall. Now I know what can suit my needs, make my life easier - and most importantly - make it fun. (16 miles an hour round Newbury racecourse sure blows away the cobwebs)
But is any of it within my reach?
Is. It. Arse.
There was this woman in the states who set up a begging website because she needed to pay off her credit cards. Now a quick trawl on the internet will find begging websites all over the place.
I'm sure there are plenty playing the disabled card. However, I wonder how many are disabled people saying, ok, I've basically got a roof over my head, some form of transport/access gadget/wheelchair (if not my preferred one), a bit of money for biscuits every now and then, I'm not suffering particularly and I'm not about to die tragically, but I really want some high end, high fun accessible gadgets? Lets be honest here, I can do without them, I don't have to spin you a sob story or anything, but I'm sick of the bloody wheelchair service and I want me one of those big flashy trike things, and an adapted motor home, and an accessible yacht, and ya know that Larry Flint? Well I might just fancy some gold plating on my wheelchair too...
Its about time we stood up (in a new posh standy-up chair thingy if need be) and said, dammit, I want some fun things!
There could be a new Fang website emerging shortly. I'm really sold on this idea. A begging website to get the extras with no heartstring tugging required. A no-nonsense, honest approach, that says "Yeah, I'm a crip, and life's chugging along, but due to not being an equal member of society yet I can't quite get the income up for some fancy accessible gadgets... wanna help?" Yeah. It could happen. All I need to do is get meself down the bank, set up an account, and away I go. On a smaller scale, Private Eye does a section called "Eye Need" and I had thought about putting an ad in there, but all those people are desperate - whereas strictly speaking, I'm not.
Of course, if the site was successful, it could be opened to other crips in the same boat. Just make a case for your 'wants', however big or small, and post it up there. It could happen...
But hey, if you don't ask....
Any early requests?
The approximate cost of a new chair, new car (cos they have to fit each other), new bed, and new trike (strictly for fun) is around 37,000 quid.
Oh, and I need to move house too.
I might get the chair through Access To Work, or at least 95% of it. I might use motability for the car (although Mr F dead against). Maybe my accident compensation will pay for the bed - but then again that sum would also include things like loss of earnings, so they'd be blown on the bed and not used for other essential costs those bastards don't seem to be able to claim for. That's another rant another time. We could go shared ownership on the house if the housing association don't take us in for accessible accommodation as per my medical letters. Detached next time, even if we end up in a bloody shed.
I might set up a begging website for the trike though. Nobody is going to have funding to buy me a trike, are they? Because lets face it, disabled kids get toys and treats. They're cute, they're dying, and they should have it, of course. But do you see any charities distributing fun stuff to disabled adults? Of course, there are some people who are the recipients of such things, but they are usually very, very disabled. I'd still argue that for your bog-standard living-privately on a low income crip, no one really dishes out for the fun stuff. You get what you need, sure (or not quite, I'm sure there are plenty of heads nodding here...I do know I'm lucky to live in the UK), but I bet there's too many of us who don't have the money to spend on fun accessible things... like trikes.
My mistake was visiting a mobility roadshow a few weeks ago and picking up a brochure from every single stall. Now I know what can suit my needs, make my life easier - and most importantly - make it fun. (16 miles an hour round Newbury racecourse sure blows away the cobwebs)
But is any of it within my reach?
Is. It. Arse.
There was this woman in the states who set up a begging website because she needed to pay off her credit cards. Now a quick trawl on the internet will find begging websites all over the place.
I'm sure there are plenty playing the disabled card. However, I wonder how many are disabled people saying, ok, I've basically got a roof over my head, some form of transport/access gadget/wheelchair (if not my preferred one), a bit of money for biscuits every now and then, I'm not suffering particularly and I'm not about to die tragically, but I really want some high end, high fun accessible gadgets? Lets be honest here, I can do without them, I don't have to spin you a sob story or anything, but I'm sick of the bloody wheelchair service and I want me one of those big flashy trike things, and an adapted motor home, and an accessible yacht, and ya know that Larry Flint? Well I might just fancy some gold plating on my wheelchair too...
Its about time we stood up (in a new posh standy-up chair thingy if need be) and said, dammit, I want some fun things!
There could be a new Fang website emerging shortly. I'm really sold on this idea. A begging website to get the extras with no heartstring tugging required. A no-nonsense, honest approach, that says "Yeah, I'm a crip, and life's chugging along, but due to not being an equal member of society yet I can't quite get the income up for some fancy accessible gadgets... wanna help?" Yeah. It could happen. All I need to do is get meself down the bank, set up an account, and away I go. On a smaller scale, Private Eye does a section called "Eye Need" and I had thought about putting an ad in there, but all those people are desperate - whereas strictly speaking, I'm not.
Of course, if the site was successful, it could be opened to other crips in the same boat. Just make a case for your 'wants', however big or small, and post it up there. It could happen...
But hey, if you don't ask....
Any early requests?
Monday, May 09, 2005
Do The Needs Of The Few Have To Outweigh The Needs Of The Many?
Call off the cavalry - my hotel drama disolved rather satisfyingly after a few polite but firm phone calls. After a shaky start the hotel staff rallied and found a double bed to put in place of the two single beds that had originally been in the room (remember - the ones no-one told me about?).
My mission is not over, though - I'm due to be doing more travelling for work so need to use a few of these big hotel or road travel places - with that in mind, an ongoing mission for me is to make it easier by helpfully giving them feedback where things could be changed or improved (no, I'm not being sarcastic - praise where praise is due, and constructive comments when it's not...). So in the last case, I will be asking the company to change its website so disabled users can specify when booking online (why shouldn't we get the same discounts at the same convenience as everybody else?), ask them to ensure disabled people have a choice of twin and double rooms like everybody else, and ensure where there is no choice, people are informed in the normal processes as any other customer would be. I only found out by accident - not good enough.
I know it's not an ideal world, nor will I singlehandedly change it, but like I said before - you have to speak up. At least that way your conscience is clear.
I suppose this means by rights I should contact the other hotel too. Bother. There is sometimes the feeling that with some places, you'd need a full time commitment to chasing them up, and with some, a word in the right ear will have some effect. I guess you have to pick your fights.
Since I have been online, I find it much easier to complain, and one tactic that is especially useful is the ability to send copies of the complaint all over the company - to the branch concerned, to their head office, to the sales and marketing departments. That way, somebody does not file your complain under "it's only them" and forget about it, because in the 'cc' section, they can see their boss and their bosses boss have been sent it too. I did this with Sainsbury's recently over car parking at my local branch, and after weeks of having the local manager dodge my messages, he suddenly became very helpful. Sadly it didn't last, but I don't mind so much because in doing that, his boss at head office also replied to me. Generally the more people you copy it to, the more chances you have of finding out other important e-mail addresses of people higher up in the organisation. Now the car park is having problems again I will write to the head office boss to ask him why his local mangers cannot sustain their disability awareness past a few weeks. Of course, cc-ing that to the local manager who obviously thought I'd go away after a few temporary changes and some nice noises will be very satisfying...
Anyway, back to the most recent access drama. We glided in to the room (well, I did - he followed with all the bags...), with me holding my breath to see if it would be an ordeal or not. I immediately felt like it wasn't going to be. It was situated in a quiet area of the hotel - out of the way of corridor traffic, round the back, looking out onto a garden and some trees. The double bed took up less space that two singles, so plenty of wheeling room. Low storage to aid unpacking. The bathroom had a nice low washbasin, rather grand looking with ample room on the side to put out things you didn't want to stretch for when washing. The bath had a large flat area at sitting height you could transfer on to, was graded inside with several places you could sit or lower down into, and with handrails in sensible places. There were actually two showers, one low down, so you could sit in the bath to use it, and one higher up, so a standing shower was also possible. Lever taps. Handrails by the toilet. A big enough space to turn the chair round with the door closed. A good sized mirror set low down. And clean. Hurrah!
Then Mr F came in. The first thing he noticed was unless he wanted to 1) shave his chest, or 2) cut off his head whilst attempting to shave his face, or 3) bend down at an angle not condusive to the health of his back, the mirror was way too low.
He glared at the washbasin - similar issues. The basin came up to his mid thighs. It was like watching Gulliver in Lilliput.
Over at the bath, which I was already starting to beg for, he pointed out his much loved soaks in the bath could not be accomodated as it was very shallow. He didn't actually say heaving the bags and my wheelchair about means he looks forward to a long soak in the bath, but I know he does. His back isn't a major issue now, but it might be in the future. If a carer has a sore back - who cares for the carer?
I began to feel a bit guilty, which was stupid. Just for a change, it was me who was getting my own way here. It was his turn to feel left out. Against my wildest dreams, we'd stumbled into a great accessible environment for me that wasn't AB friendly. Normally on my own I'd not even have noticed...
How ironic is that?
For the first time I had to listen to him complaining about the bathroom. I tried to sympathise whilst at the same time trying to hide my glee that I could move around without getting sore or tired because the environment suited me. At times like this - when the person you love is the one struggling - you do not feel a sense of payback, justice, whatever. There are many circumstances like this where i feel like being the one saying "I told you so" or "Now you know how it is for me"... He knows how it is for me, and he doesn't go around telling me that it's right or wrong - because where's the progress in that?
What could have been changed? I suppose a longer mirror would have worked, or two mirrors like there were two showers. I don't know about the bath being deeper - because it wasn't very deep and there were two different levels to lower yourself on to before getting to the bottom, a deeper bath would have made that more difficult. There would have to be a suitable mechanism to lower yourself into a deeper bath - which I'm all for - I like deep baths too. (Although being on the petite side, anything more than a birdbath is deep to me...). I know you can get adjustable washbasins, but I've never seen one in a hotel - that would have solved that problem. As carers get older, they have health issues too, and although we're hardly pensioner material, accessible things for one are just that - with features like this, the balance shifts from helping one to harming the other - not what you'd call a real solution.
I know when we finally move to purpose built accomodation, it will be great for me, but I'd be unhappy if that meant he couldn't have his wallowing baths, or I was the one watching him strain to use something that wasn't designed to accomodate the way he does things too.... In this circumstance, complaining to the hotel that the accessible room I'd requested wasn't accessible for my able bodied husband and carer seems a bit of a joke, doesn't it?!!!
My mission is not over, though - I'm due to be doing more travelling for work so need to use a few of these big hotel or road travel places - with that in mind, an ongoing mission for me is to make it easier by helpfully giving them feedback where things could be changed or improved (no, I'm not being sarcastic - praise where praise is due, and constructive comments when it's not...). So in the last case, I will be asking the company to change its website so disabled users can specify when booking online (why shouldn't we get the same discounts at the same convenience as everybody else?), ask them to ensure disabled people have a choice of twin and double rooms like everybody else, and ensure where there is no choice, people are informed in the normal processes as any other customer would be. I only found out by accident - not good enough.
I know it's not an ideal world, nor will I singlehandedly change it, but like I said before - you have to speak up. At least that way your conscience is clear.
I suppose this means by rights I should contact the other hotel too. Bother. There is sometimes the feeling that with some places, you'd need a full time commitment to chasing them up, and with some, a word in the right ear will have some effect. I guess you have to pick your fights.
Since I have been online, I find it much easier to complain, and one tactic that is especially useful is the ability to send copies of the complaint all over the company - to the branch concerned, to their head office, to the sales and marketing departments. That way, somebody does not file your complain under "it's only them" and forget about it, because in the 'cc' section, they can see their boss and their bosses boss have been sent it too. I did this with Sainsbury's recently over car parking at my local branch, and after weeks of having the local manager dodge my messages, he suddenly became very helpful. Sadly it didn't last, but I don't mind so much because in doing that, his boss at head office also replied to me. Generally the more people you copy it to, the more chances you have of finding out other important e-mail addresses of people higher up in the organisation. Now the car park is having problems again I will write to the head office boss to ask him why his local mangers cannot sustain their disability awareness past a few weeks. Of course, cc-ing that to the local manager who obviously thought I'd go away after a few temporary changes and some nice noises will be very satisfying...
Anyway, back to the most recent access drama. We glided in to the room (well, I did - he followed with all the bags...), with me holding my breath to see if it would be an ordeal or not. I immediately felt like it wasn't going to be. It was situated in a quiet area of the hotel - out of the way of corridor traffic, round the back, looking out onto a garden and some trees. The double bed took up less space that two singles, so plenty of wheeling room. Low storage to aid unpacking. The bathroom had a nice low washbasin, rather grand looking with ample room on the side to put out things you didn't want to stretch for when washing. The bath had a large flat area at sitting height you could transfer on to, was graded inside with several places you could sit or lower down into, and with handrails in sensible places. There were actually two showers, one low down, so you could sit in the bath to use it, and one higher up, so a standing shower was also possible. Lever taps. Handrails by the toilet. A big enough space to turn the chair round with the door closed. A good sized mirror set low down. And clean. Hurrah!
Then Mr F came in. The first thing he noticed was unless he wanted to 1) shave his chest, or 2) cut off his head whilst attempting to shave his face, or 3) bend down at an angle not condusive to the health of his back, the mirror was way too low.
He glared at the washbasin - similar issues. The basin came up to his mid thighs. It was like watching Gulliver in Lilliput.
Over at the bath, which I was already starting to beg for, he pointed out his much loved soaks in the bath could not be accomodated as it was very shallow. He didn't actually say heaving the bags and my wheelchair about means he looks forward to a long soak in the bath, but I know he does. His back isn't a major issue now, but it might be in the future. If a carer has a sore back - who cares for the carer?
I began to feel a bit guilty, which was stupid. Just for a change, it was me who was getting my own way here. It was his turn to feel left out. Against my wildest dreams, we'd stumbled into a great accessible environment for me that wasn't AB friendly. Normally on my own I'd not even have noticed...
How ironic is that?
For the first time I had to listen to him complaining about the bathroom. I tried to sympathise whilst at the same time trying to hide my glee that I could move around without getting sore or tired because the environment suited me. At times like this - when the person you love is the one struggling - you do not feel a sense of payback, justice, whatever. There are many circumstances like this where i feel like being the one saying "I told you so" or "Now you know how it is for me"... He knows how it is for me, and he doesn't go around telling me that it's right or wrong - because where's the progress in that?
What could have been changed? I suppose a longer mirror would have worked, or two mirrors like there were two showers. I don't know about the bath being deeper - because it wasn't very deep and there were two different levels to lower yourself on to before getting to the bottom, a deeper bath would have made that more difficult. There would have to be a suitable mechanism to lower yourself into a deeper bath - which I'm all for - I like deep baths too. (Although being on the petite side, anything more than a birdbath is deep to me...). I know you can get adjustable washbasins, but I've never seen one in a hotel - that would have solved that problem. As carers get older, they have health issues too, and although we're hardly pensioner material, accessible things for one are just that - with features like this, the balance shifts from helping one to harming the other - not what you'd call a real solution.
I know when we finally move to purpose built accomodation, it will be great for me, but I'd be unhappy if that meant he couldn't have his wallowing baths, or I was the one watching him strain to use something that wasn't designed to accomodate the way he does things too.... In this circumstance, complaining to the hotel that the accessible room I'd requested wasn't accessible for my able bodied husband and carer seems a bit of a joke, doesn't it?!!!
Wednesday, May 04, 2005
More Pesky Hotels
Once again (yes, my social life has picked up...) I am off to be at the mercy of another 'accessible' hotel. I booked with a big hotel chain this time, thinking, stupidly, because there was an access sign on their website, that they might be more on the ball with their premises.
To some extent this is true. They have parking. They have handrails in the bathrooms. They have lower storage space for clothes. But do they let crips loose in a double room? Na-ah. Only twin rooms, cos everyone knows we're all single, right?
Except I'm married. And I'm looking forward to a nice getaway with Mr F, husband of less than one year. And the last thing I want is to sleep in a dratted twin bed - and especially not to find out by a short e-mail the oh, by the way, madam, you know that double room you booked? Sorry. We only do twins for disabled people. That is alright though, isn't it?
No it's bloody not.
First off, I rang the hotel (as always) to discuss access with them. Fine. No mention of only twin rooms, although I said I wanted to book a double - did they do accessible doubles? Apparently yes. When I found out how much it was, I balked, and asked why the prices weren't the same as their website advertised. Because you have to book online, a-ha. Its cheaper on the website. Fair enough, it's common practice - although I prefer not to do this usually in case you can't specify stuff like access, ground floor room, and so on. So, I was concerned whether a disabled customer could make access requests online, and the staff member assured me there was a form where I could specify an accessible room was required. So that was ok. Rightie-ho. (Are any of you shaking your heads yet?)
So when I went through the booking process online, there was no form. Hmmm. But there was a booking reference number given to me after they'd taken my money and a call centre number to ring if you needed to make any further arrangements. So I cheerily rung it and explained the situation. Could I please have an accessible double room?
"No." she said. "Can't change any specifications." and just stopped speaking, like I might say "Oh, thank you" and go away. Bloody fussy disabled people, always wanting something extra... etc...
Instead, I said "WHAT?"
She realised pretty quickly this was the wrong answer. "Perhaps I could ring the hotel direct and make arrangements for you?"
I said "YES!" ans then after a small pause, added "Please".
Now, I'm a bit cantankerous, and frankly in my old age, suspicious of young sounding people in call centres. When I was a student, my flatmates worked in call centres, and it's a crappy job with crappy treatment for crappy money. Consequently, commitment to the job was not high, so to cover all the bases, I dropped the hotel sales department an e-mail saying this was my booking reference, I'd like an accessible room, and was it possible to reserve parking?" It's a bit sad when you're driven to do stuff like this, but honestly, previous bad experiences have the habit of turning you into a bit of a manic sometimes. I mean. look at me.
So I got home recently to find this e-mail saying (but not answering my question) that there was parking, and telling me where I'd find it. Not a direct no, we don't reserve it, which I'd not have really minded about, not being on my own. The real purpose of my contact had been simply to warn them a wheelchair user was imminent. On the end of the e-mail was this little remark, by the way, you're not booked in a double, it's a twin - ok?
Cue fuming and the inevitable question every crip has to face at one time or another... AM I GOING TO DO ANYTHING ABOUT THIS?
Like what? I really can't be bothered to find another hotel and go through all the bloody access foreplay all over again. I decided to ring the hotel and barter.
Could they move a double bed into the room? Where they aware that offering access wasn't really effective if the customers could access specific information about what it was? Would they give me a discount if they couldn't move a bed? Why doesn't the staff, the website and the call centre have anyone able to explain the policy of crips always = twin rooms? Do they swap other customers who've booked doubles into twins? and so on. Worst case scenerio, twin beds and a discount. Best outcome, a double bed gets put into one of the accessible rooms and the hotel staff, call centre and website enable people to specify double or twin accessible room in future. I feel you have to do this went you're a disabled person, or people'll never change. And it's cathartic to get something done, either for yourself or for everyone. Better than just sitting here and venting all this up, then going into a single bed muttering about how unfair life is. Spread it around!
So I'm ready to fight another day tomorrow. They're ringing me promptly at 9.00. Diligence to my concern is good, but I have shot myself in the foot - and done myself out of a lie-in.
You can't have everything, can you?
To some extent this is true. They have parking. They have handrails in the bathrooms. They have lower storage space for clothes. But do they let crips loose in a double room? Na-ah. Only twin rooms, cos everyone knows we're all single, right?
Except I'm married. And I'm looking forward to a nice getaway with Mr F, husband of less than one year. And the last thing I want is to sleep in a dratted twin bed - and especially not to find out by a short e-mail the oh, by the way, madam, you know that double room you booked? Sorry. We only do twins for disabled people. That is alright though, isn't it?
No it's bloody not.
First off, I rang the hotel (as always) to discuss access with them. Fine. No mention of only twin rooms, although I said I wanted to book a double - did they do accessible doubles? Apparently yes. When I found out how much it was, I balked, and asked why the prices weren't the same as their website advertised. Because you have to book online, a-ha. Its cheaper on the website. Fair enough, it's common practice - although I prefer not to do this usually in case you can't specify stuff like access, ground floor room, and so on. So, I was concerned whether a disabled customer could make access requests online, and the staff member assured me there was a form where I could specify an accessible room was required. So that was ok. Rightie-ho. (Are any of you shaking your heads yet?)
So when I went through the booking process online, there was no form. Hmmm. But there was a booking reference number given to me after they'd taken my money and a call centre number to ring if you needed to make any further arrangements. So I cheerily rung it and explained the situation. Could I please have an accessible double room?
"No." she said. "Can't change any specifications." and just stopped speaking, like I might say "Oh, thank you" and go away. Bloody fussy disabled people, always wanting something extra... etc...
Instead, I said "WHAT?"
She realised pretty quickly this was the wrong answer. "Perhaps I could ring the hotel direct and make arrangements for you?"
I said "YES!" ans then after a small pause, added "Please".
Now, I'm a bit cantankerous, and frankly in my old age, suspicious of young sounding people in call centres. When I was a student, my flatmates worked in call centres, and it's a crappy job with crappy treatment for crappy money. Consequently, commitment to the job was not high, so to cover all the bases, I dropped the hotel sales department an e-mail saying this was my booking reference, I'd like an accessible room, and was it possible to reserve parking?" It's a bit sad when you're driven to do stuff like this, but honestly, previous bad experiences have the habit of turning you into a bit of a manic sometimes. I mean. look at me.
So I got home recently to find this e-mail saying (but not answering my question) that there was parking, and telling me where I'd find it. Not a direct no, we don't reserve it, which I'd not have really minded about, not being on my own. The real purpose of my contact had been simply to warn them a wheelchair user was imminent. On the end of the e-mail was this little remark, by the way, you're not booked in a double, it's a twin - ok?
Cue fuming and the inevitable question every crip has to face at one time or another... AM I GOING TO DO ANYTHING ABOUT THIS?
Like what? I really can't be bothered to find another hotel and go through all the bloody access foreplay all over again. I decided to ring the hotel and barter.
Could they move a double bed into the room? Where they aware that offering access wasn't really effective if the customers could access specific information about what it was? Would they give me a discount if they couldn't move a bed? Why doesn't the staff, the website and the call centre have anyone able to explain the policy of crips always = twin rooms? Do they swap other customers who've booked doubles into twins? and so on. Worst case scenerio, twin beds and a discount. Best outcome, a double bed gets put into one of the accessible rooms and the hotel staff, call centre and website enable people to specify double or twin accessible room in future. I feel you have to do this went you're a disabled person, or people'll never change. And it's cathartic to get something done, either for yourself or for everyone. Better than just sitting here and venting all this up, then going into a single bed muttering about how unfair life is. Spread it around!
So I'm ready to fight another day tomorrow. They're ringing me promptly at 9.00. Diligence to my concern is good, but I have shot myself in the foot - and done myself out of a lie-in.
You can't have everything, can you?
Tuesday, May 03, 2005
Fish Poo Stew
I'm supposed to be out shopping for an outfit to wear to various weddings and events this summer, but instead, I'm lurking at home suffering from a stomach upset. It's probably to do with the weekend, well, definitely it is. There are so many culprits over the past three days I can't be sure whether it's bad chinese food, alcohol, playing in the dirt (I'll get to that in a minute) or scoffing loads of white chocolate maltesers and a white chocolate maltesers ice cream. I do love white chocolate maltesers, and as a demonstration of how sick I'm feeling, I had some left, but threw them in the bin this morning as I can't bear to look at them.
Mr F and I were due to go out with a friend (whose hubby is working away) for a chinese on Friday, but a frantic phone call that afternoon revealed she'd got home to find the pump in the fish pond wasn't working. This is a big deal cos they have lots of expensive koi carp, who are breeding. So we went over to assist after realising she was tired, emotional, and playing with electricity and water trying to get the pump started. At 7.30 Mr F was up to his thighs in pooey pond water scaring the koi, and at 8.00 we gave up and decided new parts were in order, which would be available from the garden centre on Sunday. I can't help much with these practical things, so I just sat and watched them wade around in the pond. Shame.
On Saturday one of my mates in Leicester had a 30th birthday do. We went to a chinese all-you-can-eat buffet who had cunningly declared they were accessible to get our business - not according to the two wheelies present they weren't anyway. Luckily where were people in the party who were able to lift us over the step, which was twice as chunky monster bastard as the one at the hotel in Brighton. A big crowd gathered, and we did a few royal waves. On occasions like these I try to imagine I'm just employing an entourage, which helps make me feel less self concious... The rest of the evening passed in a blur, so I think it was good. I remember the manager looking horrified as myself and my friend asked him to help carry us to the toilets "and you'll have to help us on too, you know..." (as they didn't, after all their claims, have accessible loos), but we were joking. He probably didn't see the funny side, nor believe us when we said we were disability access inspectors, but maybe he'll remember telling people your restaraunt is accessible - when it is not - means drunken disabled patrons will take advantage of your lies and riot on you.
Mr F stayed at home, won a large sum of money in a poker game and played paintaball on Sunday morning.
We're turning into poker fiends, but that's another story.
Sunday day brought the trip home for me. In the afternoon there was another attempt by Mr F and Kate to fix the pump. A new motor was put in. More pond wading. It all got very complicated, and once again I was completely no help. Kate kept apologising for wasting our time, in between her and Mr F getting covered in fish poo. The pump was absolutely full of the evil stuff, so to keep my hangover in check and forget about being as much use as a chocolate teapot, I sat on the expansive gravel path and tried to find something to do. I started collecting suitably shaped stones to make a piece of art on a big slab of stone by the path. I was trying to make myself scarce, really. When you are unable to do practical fish poo projects, feighing interest only gets the people struggling to do the job more fed up. For them, nothing seems to work, your 'helpful' comments fail to have any impact (being based on sheer lack of insight), and you are dry and clean to top it all off.
First I did a sun. Started out with a small circle and surrounded it with swirly rays. It didn't look right with the rays, so I made it a bit bigger. Kate looked up at me. "You're a 35 year old child" she said. It's true. I am. The afternoon sun was hot on my back. The sky was blue. There was a gentle breeze. 30 feet away from me two, people were wading around the pond frantically seeking precious parts of the pump mechanism that someone had dropped into the deep end, and I couldn't do a damn thing about it. Time like this I realise disability has its up sides too.
I did a bird next. This was more difficult because there wasn't was much room left on the stone, and I needed smaller pieces. In retrospect, complaining loudly about this was a mistake compared with the dramas happening over in the pond. Shouts of disbelief and a few sludgy weeds were thrown in my general direction, forcing me to retreat to a patch of lawn further away and go to sleep. The bird could have had more detail in it but it just wasn't worth the hassle. Mr F wearily crawled home, trailed fish poo around the bathroom, got into bed, and fell asleep til Monday afternoon, whereupon we tried to eat our own body weight in various chocolate confectionary.
Woke up this morning feeling extremely rough after three days of eating and sitting around playing in the gravel. So as you can see, there could be several culprits for my stomach upset. Funny what bank holidays do to you. Always need another one straight after. Watching others work, or supervising as it is also known, is a role I seldom refuse.
The pump still isn't fixed, and tonight is round three. I might stay at home this time. I hope they don't scatter my artwork.
Mr F and I were due to go out with a friend (whose hubby is working away) for a chinese on Friday, but a frantic phone call that afternoon revealed she'd got home to find the pump in the fish pond wasn't working. This is a big deal cos they have lots of expensive koi carp, who are breeding. So we went over to assist after realising she was tired, emotional, and playing with electricity and water trying to get the pump started. At 7.30 Mr F was up to his thighs in pooey pond water scaring the koi, and at 8.00 we gave up and decided new parts were in order, which would be available from the garden centre on Sunday. I can't help much with these practical things, so I just sat and watched them wade around in the pond. Shame.
On Saturday one of my mates in Leicester had a 30th birthday do. We went to a chinese all-you-can-eat buffet who had cunningly declared they were accessible to get our business - not according to the two wheelies present they weren't anyway. Luckily where were people in the party who were able to lift us over the step, which was twice as chunky monster bastard as the one at the hotel in Brighton. A big crowd gathered, and we did a few royal waves. On occasions like these I try to imagine I'm just employing an entourage, which helps make me feel less self concious... The rest of the evening passed in a blur, so I think it was good. I remember the manager looking horrified as myself and my friend asked him to help carry us to the toilets "and you'll have to help us on too, you know..." (as they didn't, after all their claims, have accessible loos), but we were joking. He probably didn't see the funny side, nor believe us when we said we were disability access inspectors, but maybe he'll remember telling people your restaraunt is accessible - when it is not - means drunken disabled patrons will take advantage of your lies and riot on you.
Mr F stayed at home, won a large sum of money in a poker game and played paintaball on Sunday morning.
We're turning into poker fiends, but that's another story.
Sunday day brought the trip home for me. In the afternoon there was another attempt by Mr F and Kate to fix the pump. A new motor was put in. More pond wading. It all got very complicated, and once again I was completely no help. Kate kept apologising for wasting our time, in between her and Mr F getting covered in fish poo. The pump was absolutely full of the evil stuff, so to keep my hangover in check and forget about being as much use as a chocolate teapot, I sat on the expansive gravel path and tried to find something to do. I started collecting suitably shaped stones to make a piece of art on a big slab of stone by the path. I was trying to make myself scarce, really. When you are unable to do practical fish poo projects, feighing interest only gets the people struggling to do the job more fed up. For them, nothing seems to work, your 'helpful' comments fail to have any impact (being based on sheer lack of insight), and you are dry and clean to top it all off.
First I did a sun. Started out with a small circle and surrounded it with swirly rays. It didn't look right with the rays, so I made it a bit bigger. Kate looked up at me. "You're a 35 year old child" she said. It's true. I am. The afternoon sun was hot on my back. The sky was blue. There was a gentle breeze. 30 feet away from me two, people were wading around the pond frantically seeking precious parts of the pump mechanism that someone had dropped into the deep end, and I couldn't do a damn thing about it. Time like this I realise disability has its up sides too.
I did a bird next. This was more difficult because there wasn't was much room left on the stone, and I needed smaller pieces. In retrospect, complaining loudly about this was a mistake compared with the dramas happening over in the pond. Shouts of disbelief and a few sludgy weeds were thrown in my general direction, forcing me to retreat to a patch of lawn further away and go to sleep. The bird could have had more detail in it but it just wasn't worth the hassle. Mr F wearily crawled home, trailed fish poo around the bathroom, got into bed, and fell asleep til Monday afternoon, whereupon we tried to eat our own body weight in various chocolate confectionary.
Woke up this morning feeling extremely rough after three days of eating and sitting around playing in the gravel. So as you can see, there could be several culprits for my stomach upset. Funny what bank holidays do to you. Always need another one straight after. Watching others work, or supervising as it is also known, is a role I seldom refuse.
The pump still isn't fixed, and tonight is round three. I might stay at home this time. I hope they don't scatter my artwork.
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