This Is My Blog

I'm confused by the BBC

2012-01-18T07:26:00.007Z

The last couple of weeks have seen the Coalition's Welfare Reform Bill (WRB) being voted on in the House of Lords.

There are two main aspects of disability benefits. First is ESA, Employment Support Allowance. This is the money given to people who are unable to work because of illness or disability. Then there is DLA, Disability Living Allowance. This is the money given to people regardless of their income or whether or not they are in work, in recognition of the increased costs that come with disability.

It is possible to get both; it is also possible to be eligible for either one but not the other. I myself get DLA (because I have substantial disability-related costs) but not ESA (because I am working).

Part of the WRB includes plans to replace DLA with PIP, Personal Independence Payments. One of the stated aims of the WRB is to reduce the DLA spend by 20%. Since the DWP's (Department of Work and Pensions) own figures show that fraud is only 0.5%, this means that genuinely disabled people are going to be hit by this - which is why we're all worried.

(Is everyone keeping up with the abbreviations at the back? A cynical person might think that part of the reason for renaming as well as reforming this benefit is to make it far too complicated for the average news column to be able to report on.)

Disability campaigners have been asking for a six-month pause to the WRB so that a proper independent consultation can be carried out, and to start the change slowly with a pilot project to uncover and iron out the teething troubles. We are of the opinion that if the government is going to fiddle about with the benefits that support the most vulnerable, most disabled, and/or most ill people in the country (including many who are terminally ill and only claiming for their last few months of life) they should think really carefully about it and be sure that they will do as little damage to as few people as possible.

Last night, the Lords voted. The government won, by 16 votes, the WRB rattles on to the next stage. The good news is that in order to swing the vote, Lord Freud had to make an awful lot of promises - under oath and on the record - about the implementation of PIP. Our amendments aren't passed, but some of what we were asking for in them has been conceded, and that's more than many of us expected.

What does the BBC have to do with this?

Well, the BBC is confusing me.

First, they ignored the issue. If you were on Twitter, you can't have missed the #spartacusreport hashtag that was top trending in the UK for most of last week. It refers to the Responsible Reform report. Auntie Beeb had time to do all sorts of analysis about middle-class shoplifting, but did not so much as acknowledge our existence.

Then Radio 4's News Quiz did sterling work using comedy to demonstrate exactly how ridiculous the proposals are. Hat-tip to Sandy Toksvig and Sue Perkins in particular.

But from there on in, and in the sections of the Corporation that are defined as News rather than Entertainment, it's been the government line all the way.

For instance, Maria Miller, the person who is laughably job-titled Minister "For" Disabled People, was given unchallenged airtime to claim that Responsible Reform had only used 10% of the responses to the initial WRB proposals. Technically, that's true. There were over 5,000 responses and we only used about 500. Why? Well, the 500 responses we were allowed to use were official responses from "public" people like the Mayor of London (who objected to the proposals on several counts) and organisations like the Papworth Trust, Mind, and Scope (who also objected to the proposals on several counts). The report uses all of the "official" responses to which we were granted access. However, for obvious reasons, we weren't allowed access to the private responses from private individuals. This includes the responses from many campaigners who had written to describe how they, personally, as individuals, would be affected and what their fears were. Yet to hear Miller speak, you'd think we'd cherry-picked a tiny number of supportive statements and ignored thousands of reports in support of the WRB.

Where was the balanced reporting? Where was the skeptical journalist to ask Miller if the thousands of private responses we weren't allowed to use were broadly for or against the government proposals? Why are her vague and often misleading comments allowed to pass unchallenged?

And then this morning, this article (which I'm copy/pasting from in case it gets edited in future, as the BBC often do):

"The government has headed off a House of Lords defeat over plans to replace the Disability Living Allowance.

Ministers want to amend the system to make sure claimants undergo more testing, but opponents say this will mean 500,000 people will lose benefits."

Firstly, the 500,000 losing benefits. The WRB has a stated aim to reduce DLA by 20%. There are 3.2 million people on DLA (source: dwp.research.gov.uk); a 20% reduction is therefore 640,000 genuinely disabled individuals. So we say that the WRB - not the testing - will mean 500,000 people lose benefits partly because it's a nice round number and partly so that no one can accuse us of over-egging the pudding.

Secondly, ministers do not want to make sure we undergo more testing. They want us to undergo different testing (for which they will pay a private company because they think asking our NHS doctors for medical evidence is inappropriate) and they want us to undergo more frequently repeated testing.

We have said that making claimants with incurable conditions undergo frequently repeated testing is a waste of governmental time and money ("no, my leg still hasn't grown back").
We have also said that, particularly with regard to people with mental health issues, too frequently repeated testing causes distress to claimants which may impair their recovery.

We do not pretend, nor have we ever said, that making claimants undergo more testing will mean 500,000 people losing benefits. Those two items don't belong in the same paragraph, let alone the same sentence.

You get the idea. There are scores of examples just from the last two days - far too many to deconstruct all of them. We are not seeing balance from the BBC. First we were dismissed and ignored, now we are being misrepresented as ill-informed scare-mongerers making disjointed and illogical claims that we have never made, while Miller and her ilk are permitted to broadcast spin and propaganda that the WRB itself and the DWP's own statistics disprove.

The reason I feel upset by this behaviour from the BBC when I can usually ignore it from the Daily Mail is the same reason why I feel more betrayed by the 65 Liberal Democrat lords who voted with the government than I do by the 150 Conservative lords. When people or organisations behave in the way you expect, it doesn't bother you - but when people or organisations you believe in let you down, it stings.

We don't expect the BBC to support us, but we expect neutrality, balance, investigation, factual reporting. We're obviously upset that the Lords' vote went against us, but the way the BBC are treating and portraying us only increases the negative image of disabled people and adds insult to injury.

Healthy Eating With Mary

2012-01-03T19:47:00.002Z

Hello everybody. I feel that I really should be doing some sort of New Year post, and maybe I'll get to that later, but today, we're going to talk about Healthy Eating, which is very important after the excesses of the holiday period.

This... is a Banana.

A banana is a wonderful fruit, with lots of lovely vitamins, and counts as one of your five-a-day.

However, while the banana is delicious when eaten fresh and unaugmented, the essence of cooking is to improve upon the raw materials by combining them while retaining the goodness of the basic ingredients.

For this reason, I have added a few chocolate buttons.

You will notice that the chocolate buttons in the picture are from Montezumas. By using these chocolate buttons I am supporting ethically-trading British artisans, so really this is a contribution to both the planet and the economy - quite apart from the well-known virtues of quality cocoa including its antioxidant properties and its ability to trigger a release of your body's natural endorphins.

However, we again face the problem of core ingredients on their own being boring so I have decided to add a secondary chocolate element to complement the buttons - Ben & Jerry's Chocolate Fudge Brownie ice cream.

My next addition provides much-needed calcium as well as offsetting the cocoa level of the dish. Yes, it's squirty cream.

My personal belief is that the satisfaction gained from a good squirt is a restorative to the soul, making this a dish with psychological benefits in addition to the nutritional aspects already discussed.

Finally, a drizzle of chocolate sauce adds aesthetic appeal and pulls the whole dish together.

I feel much healthier now.

(This blog post completed before the inevitable sugar crash. Apologies for typos.)

Disabled, not dead

2011-11-04T18:33:00.003Z

Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...

I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.

But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.

Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*

Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.

Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?

Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".

We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.

* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.

Second lesson

2011-09-07T12:40:00.002+01:00

I recovered pretty well from my first riding lesson. On day 1 I had sore muscles, but nothing too upsetting. On day 2, my muscles had settled down considerably, but my ME/CFS symptoms (sore throat, headache, etc) flared. But on day 3 I was back within normal parameters.

Today was my second lesson. There were good bits and bad bits.

Things started off well. I got onto the horse correctly and was led into the school. I was sitting much more comfortably, I was wearing different shoes and I think that helped my position. I remembered how to hold the reins, and I felt good and confident and totally ready to balance on top of Harvey as he went round and round the school.

Then I realised that, although the instructor (different instructor today) was going to be walking around with me, Harvey wasn't actually on a lead rein. I was supposed to be in charge of getting him to go and stop and turn.

In many ways this makes sense. A lot of how you're supposed to communicate with the horse about going and stopping and turning has to do with how you sit and conversely how you sit is going to be communicating with the horse. So it's a bit unfair and confusing and counter-productive for all concerned if the horse is being tugged left by the instructor when everything in the rider's body is saying Turn Right (and the newbie rider doesn't realise that's what she's doing). It's also about as safe as it could be - unlike cars, horses don't tend to crash into walls when you get something wrong.

However, all the sense in the world could not quell my rising sense of panic. I wanted to beg them to just let me get "sitting" nailed before I tried actual "riding". I was genuinely surprised when my pride and positivity managed to get in between my brain and my mouth, to morph the phrase "no! nooo! let me off! can't do it! don't wanna!" into "okay, absolutely, so what do I need to know?"

To my amazement, I did manage to persuade Harvey to start and stop and turn and change direction several times. But what we then experienced was a clash between my ability, and the principles of teaching.

Principles of teaching are to keep pushing the student to improve. Sit up straight - good! Now put your shoulders back - good! Now try and have your hands about the same width apart as his ears - good! But don't look at the horse, or at your hands, keep looking where you want to go - good! Let your hips move - good! Aim towards the H - use your outside leg - don't lean forwards...

My ability considered on a scale of 1-10 where 10 is my top performance, probably started at about a seven. I got on the horse, I warmed up a bit, my confidence grew, I got a few things right, and I was functioning at a ten! for ooh, maybe a minute and a half. The demands of the teacher increased. My brain was trying to handle more instructions. My body was getting tired. Gradually my ability dwindled to maybe a three. I was dizzy and not breathing well because I was holding my breath as I tried to follow all the instructions at once. We rounded another corner and I was trying so hard to remember which is my "outside leg" that my concentration on sitting up straight all but vanished, and whichever leg it was, the passable squeezes and kicks I was managing at the beginning of the lesson had turned into rather pathetic flops.

At this point Harvey quite reasonably decided that in the absence of a decent rider or a lead rein, he certainly wasn't going to be taking half-baked instructions from the weak and wobbly sack of jelly perched atop his saddle. His walk slowed to a meander and eventually stopped altogether. With the instructor, the supervisor, and the people who were there for the previous and next lessons all calling out words of encouragement, I got another few metres out of him, but by that point I was just burning with humiliation and wanted to not only slide off the horse, but continue right on into the ground.

Of course the ground doesn't work like that, and neither do horses. It's surprisingly difficult to fall off a large horse when you're sitting comfortably with a leg either side and he's standing still, and given a choice, I'd rather not cover my clothes in grubby sand/sawdust/whatever it is. My chair was still outside by the ramped mounting block and my walking stick was in my bag which was hanging on my chair, so I was sitting up there in front of the audience as I waited for someone to bring me one or the other and help me dismount.

I managed to get down more easily than last time, although I still needed help and was hardly elegant. As I joined the other students, a couple of them made sympathetic noises about how difficult it is when you're first learning... but this didn't help, as my tired and embarrassed brain, a hair's breadth away from bursting into tears with frustration and exhaustion, could only hear that people who'd watched my efforts had found me so utterly incompetent that they could only offer pity about just how awful I was. I paid and booked my next lesson as quickly as I could and then went and sat in the car park so that I wouldn't have to talk to anybody for the half-hour until my taxi arrived.

Of course after getting home and having a rest, a cup of tea, and a spot of lunch, I can acknowledge how ridiculous this was (I could sort of acknowledge it at the time but it didn't help). It's not the job of the other students to praise or encourage me, they were trying to be nice and I was behaving like a bit of a twit to run off and hide from the world. It was my second ever lesson, and I did about as well as anyone can be expected to on their second ever lesson. I can even - grudgingly - accept that I do have an illness with physical and cognitive components, and that my rapidly dwindling ability in the latter part of my lesson was to be expected and will probably happen again.

What would be useful is if any readers who've done/are doing horse riding could give me a clue how long I should persevere before I say "no, clearly I'm not cut out for this and should call it a day." When does it become fun rather than a confusing, exhausting struggle?

Riding for the Disabled

2011-09-01T11:55:00.002+01:00

A few weeks ago, I decided to embark on a bit of an adventure. For ages I'd been trying to think of something new to do that would enable me to get out, get some exercise, meet people, but be in a safe environment and within my own abilities. Eventually I got in touch with the Riding for the Disabled Association and after a couple of false starts (many of the groups listed as being local to me were for children during term time only) I found that the nearest place for an unaffiliated disabled adult to try riding was at Lowlands Farm, in Warwickshire.

Steve took me there for an initial visit which made the whole idea seem a lot more realistic. I was able to propel myself around the site and all of the people were incredibly welcoming and friendly. I found myself really looking forward to giving it a try once the paperwork was complete (a sign-off from my doctor to confirm the basics of my condition, not too complicated, but it took a couple of weeks).

Meanwhile, I attended to watch another lesson. If I'd watched someone who knew what they were doing and had lessons X times a week trotting about being excellent on a horse, I probably would have just dropped the whole idea. I've no desire to compete, or even to excel. I don't want to own a horse or spend half my life hanging around stables. I am not really a horsey person. But instead, I was able to watch the lesson of a woman who appeared to be more or less on the same page as I was but a few months into the process. Benefiting from the stretch and the movement, her posture and muscle tone were improving. That was what I wanted to achieve and it made me even more impatient for my paperwork to come through.

Which brings us to yesterday morning and My First Riding Lesson.

First we got me kitted out with a helmet and then I rolled up the wheelie-accessible mounting block. This brought me alongside Harvey at a height that made it easy to sit on him. That was okay, I was all, hey, check me out, I'm sitting on a horse, how good is this?

Then the lady holding the lead rein started to take us away from the ramp and into the huge barn that is the riding school, and I realised just how high up I was sitting, on a moving animal, without any kind of grab rail. I didn't want to touch the reins in case I did something wrong, so I just gripped the saddle and prayed that we would stop soon. Thankfully we did come to a reassuring halt just inside the school and my instructor started adjusting bits of saddle so that I was sitting properly.

Of the next fifteen minutes, I just have a hazy recollection of going round and round the school trying to follow a thousand instructions at once while moving the whole time. I kept wanting to say look, I would be able to sit up/lean back/head up/hands here/feet there/etc if only I wasn't being jolted around on the back of this moving horse! A lot of the instructions made sense. For instance, it was actually more comfortable when I looked up and didn't lean forwards. But then she'd tell me to bang my heels into his sides and (even apart from the yes-I-know-it's-stupid fear that I would hurt the horse) I'd concentrate so hard on that, I would end up automatically looking down again at my feet/my hands/the horse/the instructor.

Nevertheless. There was an awful lot of support and positive reinforcement in with the continuous flow of instructions - it was a really good demonstration of how it's possible to push somebody in an encouraging way.

Getting off the horse was interesting, too. I couldn't get off the way I got on, with the horse alongside the great big ramped mounting block, because it's all metal and concrete and one wrong move could cause no end of trouble. Instead, one lady held Harvey still, while another stood on my right-hand side to help me swing my right leg up and over the back of the horse. My instructor was on the left-hand side and guided both my legs as I slid down to the floor, and then I stood still for a minute or two with my body against the horse, arms on his back, and the instructor supporting me from behind until the world stopped spinning. Hopefully as I gain a better idea of where I am and where the horse is, I'll be able to do that on my own.

Everyone warned me that I'd be sore the next day, but to be honest, it isn't too bad. I mean, I can feel it, certainly, especially in my back and my inner thighs, but I've woken up with worse pain and the regular ibuprofen that I take anyway seems to be holding it in check. I can still move as much as I usually can, and I've even managed to get a load of laundry done.

Next week's lesson is already booked, and I can't wait.

Restrictions Apply

2011-08-30T17:28:00.003+01:00

Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?

As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.

I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!

My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:

What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."

What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."

What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.

You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.

I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.

Repeat

2011-07-27T07:53:00.002+01:00

I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:

If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.

If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.

If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.

If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).

Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:

7% were incapable of any work (Support group)

17% were able to do some sort of work given the correct support (Work-related activity group)

39% were deemed to be fit for work and were moved onto jobseeker's allowance

36% dropped out of the application process

1% of applications were still in progress

Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".

I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

RAF Cosford

2011-07-02T20:12:00.003+01:00

This weekend Steve and I did something completely not-wedding-related. We went to RAF Cosford, a RAF museum in Shropshire.

Getting there was an adventure in itself. We decided to invite our twitterfriend @gentlechaos along and offered to give her a lift. This meant fitting three adults and two wheelchairs, plus all the other "stuff" we were each bringing along for a daytrip, safely and legally and comfortably enough for a 25-mile journey, into a three-door fiat Punto. It was a little bit on the tricky side, but we managed really quite well.

We also met up with one of Steve's friends who was able to give me a few more photos from the wedding. That was great, but the best bit of it was going around in a group of four like that - two walking and two wheelchair users. It was a wonderfully normalising experience as it meant none of us were the odd one out.

Being an airfield, Cosford starts off ahead of the game on wheelchair access. It's a huge flattish self-contained area and the buildings are huge aircraft hangars with lovely smooth flat floors that are a positive delight to move along. However, to make it even better, they have a small fleet (possibly a fleetlet?) of mobility scooters and a few manual wheelchairs available for no charge. There's also no charge for entry, although there is a small car parking fee (even for blue badge holders) of £3 per car.

There's a brilliant hands-on area with lots of little gadgets and gizmos that demonstrate, and allow visitors to experiment with, the principles used in different types of aircraft. It's allegedly for kids, but most of the people ~~playing with~~ appreciating the demonstrative devices were 5ft or taller.

The Cold War exhibition is particularly striking, with aircraft suspended from the ceilings in a very dramatic (and slightly unnerving) fashion.

Like most museums, there's far too much information to absorb on a single visit, which is a shame because by the time we next go back I'll have probably forgotten most of what I did pick up. On the other hand, it means we'll be able to go back without it being repetitive or boring, even if the exhibits themselves haven't changed.

Wedding Venue: Stoneleigh Park

2011-06-24T14:41:00.004+01:00

Apart from the date and the dress, the other big thing I didn't want to broadcast online until after the wedding was the venue.

In England, you can get married in a church, in a register office, or (since the 1990s) in "approved premises". Since neither I nor Steve have any religious beliefs, it would be disrespectful of us to get married in a church, not to mention meaningless. And there's no parking - not even blue badge parking - at the register office's "Ceremony Rooms", so approved premises it was. This has the other big advantage that you can have the ceremony and reception in the same place.

We had already decided that I would use my chair for as much of the day as possible, and of course there's always the chance that guests may have their own access requirements, so accessibility was important to us. I regret to say that most of the venues in our area either admitted outright that they could not provide proper wheelchair access, or simply didn't bother to respond to my queries. This took us from the choice of fifty-odd venues that a non-disabled bride would have, to a choice of about half a dozen.

Stoneleigh Park, also known as the National Agriculture Centre, is an absolutely unique venue. They've got all sorts of on-site facilities (4x4 offroading? Segways? Helicopter landing pads?) and different styles and sizes of room. Access, while far from perfect, is much better than at many of the other Approved Premises, but what really swung the decision was the attitude of the staff.

You see, there are plenty of wedding venues that hold perfectly "nice" weddings as long as you are having the wedding they want you to have. If you want a lovely ceremony and then reception drinks and then a mediocre yet formal sit-down three-course meal followed by speeches and a cheesy disco, they'll make it happen, but heaven forbid you suggest anything outside that template. They look at you like you've grown a second head or something.

Not Stoneleigh. I'm sure they could do that sort of wedding, and they'd probably make a perfectly good job of it, but it would be a wasted opportunity. They're used to holding Major Events. They're not primarily a hotel, or a golf club, or a village hall. They're a dedicated events venue accustomed to dealing with hundreds, thousands of guests at a time. This means that they aren't scared of doing something different. They pride themselves on flexibility. The only limits were (1) the laws of time and space, (2) the law of the land, (3) imagination and of course (4) money. Not as much money as you might think, though. I mean, they're not a budget option, but their quote was competitive with the hotels and golf clubs who were really offering much less for the money.

The Stoneleigh Park staff were absolutely awesome. My first point of contact was a woman called Rachel and she co-ordinated all the planning for rooms, facilities, liaising with our on-the-day suppliers, making sure we had all the right contracts and invoices, that sort of thing. Whenever I had a problem or a query I could go straight to her, and especially in the last few days when last-minute things popped up, she was wonderfully calm and capable at dealing with them.

The other main staff member we dealt with was a man called Mark who was in charge of our catering, and was our "on the day" co-ordinator. He worked closely with Rachel to be sure he knew what our plan was, and then on the day he oversaw events and, with his team, made sure the day went absolutely smoothly. Armed with a phone, a walkie-talkie, and a little golf-buggy type vehicle for zipping about the site from location to location, he anticipated everything. I haven't seen him in a single photo, yet somehow he was always there if we had a query and the answer to any query was usually "already being taken care of," which gave the day an almost dream-like quality.

There was not a single moment, from the initial enquiry to the post-wedding feedback enquiry, where Steve or I felt our wedding was receiving any less attention than the larger events hosted at Stoneleigh Park.

The level of privacy we had was wonderful, too. There was another event on-site that weekend (a scout camp) but the buildings, gardens, and other facilities we were using were for our private use and completely separate from anything else that was going on. We didn't have to fight town-centre car parking or put up with intrusion from pub regulars. We didn't have to schedule our food around other patrons of the restaurant or try and ignore the decorations from a playgroup. There was a handy on-site hotel, but our celebrations were in a completely different building. It was like having a tiny world set up entirely for the convenience of us and our wedding guests.

So we got our bouncy castle. We had a garden. We had comfy sofas. We had pictures by a lake. We had a cream tea. We had platters on tables rather than a buffet. We didn't need a seating plan. We were able to choose what drinks were served at the bar. Our estimated finish time of "erm, we'll have to see how it goes," was acceptable. They were completely unflappable and didn't say No to a single suggestion, although they often made suggestions that enhanced our ideas with the benefit of their experience, which was very welcome.

I really would recommend Stoneleigh Park as a venue to anyone planning a wedding.

Wedding: the Aftermath

2011-06-21T21:19:00.003+01:00

There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:

I do something active.

I feel tired, often rather more tired than the activity warrants.

I have a rest.

I feel, not 100% better, but significantly improved.

I carry on with my life.

... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.

The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.

First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.

We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.

My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.

That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.

One month on and things that are done include:

We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.

We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.

I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.

We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.

We've had some of the photos back and have been able to print ourselves some copies to show people.

We've given or posted all of the thank you notes.

We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.

I also need to do another blogpost or two about some of our vendors who really were exceptionally good.

Wedding: the party

2011-06-20T12:24:00.003+01:00

This is me and Evilstevie enjoying our first hours of married life:

After the ceremony described in my previous post, we bundled into a car with our Official Photographer (Steve's cousin) and went to a more scenic part of the venue to take some nice, couple-y photos. I'd recommend this to anybody. It allowed us to have some time to just cuddle each other and marvel at the fact that we were actually married, rather than having to dive straight in to a busy mishmash of family politics and being congratulated for a ceremony we were still getting our heads around.

This took maybe half an hour or so, and then we headed over for the reception. I had decided ahead of time that I would walk for the ceremony but use the chair for the reception, and I think this was a good idea. Our reception room was advertised as accommodating up to 160 people. Our guest list was about 80 and about 75 came. It did look a little bit sparsely populated - especially as the summery weather saw a lot of people hanging around the outdoor areas - but it also meant that I had plenty of room for manoeuvring the chair, that parents didn't have to worry about where to put buggies, that strangers weren't sitting more or less on top of each other - all of which are good things. If I was doing it again, which I don't intend to do, and if I had a free choice of room sizes that met my other requirements, then I'd probably go for something nearer the "seats 120" capacity for an 80-person guest list.

The reception was going well when we arrived. Rather than a disco drowning out all hope of civilised conversation, we'd opted for quiet chill-out jazz and this worked really well.

We'd invited all the kids (mostly little boys between 2 and 10) to come dressed as pirates. The idea was that this way their parents wouldn't have to fork out for uncomfortable suits that would be ripped and outgrown within minutes. We'd hired a bouncy castle shaped like a pirate ship, complete with giant purple octopus overhanging the prow.

We also had heaps of chocolate coins/pirate treasure on every table, in lieu of favours...

... and our cake table had several chocolate pirates on the beach, alongside their enormous treasure chest.

We did have our Wii set up in one corner to entertain the kids in case of bad weather, or if the bouncy castle was too full. It was set to just scroll through a slideshow in the meanwhile. None of the kids even noticed it.

Lunch was an assortment of sandwiches, and scones with cream and jam. The venue caterers served these in large dishes to each table, a happy medium between the awkwardness of a buffet and the unwanted formality of a plated meal and seating plan. Obviously at this point Steve and I were both making our way around the tables, with the tragic result that I had to eat two scones. Just to be polite, obviously.

You can't put helium balloons and engineers in a room together without there being an effort to get something floating. At our wedding, this was one of the pirate ship table decorations...

... shortly followed by the Stunt Bride And Groom.

We only had one Stunt Bride and Groom which we really didn't want to lose, but we had plenty of table decorations. With this in mind, when a certain young lady begged for permission to take the floating pirate ship out and launch it... well obviously it's irresponsible and we couldn't endorse it, but we felt equally unable to say no. And it did look beautiful drifting off into the dusk.

Technically the bouncy castle was for children only, although at one point Evilstevie and I did, erm, pose on it for wedding portraits that may have had a slight bouncing element.

By the evening some people had left and others had changed into more comfortable, less formal clothes. At Jiva's suggestion, I too had a less formal outfit of black trousers and a white top to get changed into for the evening. This was another one of the Really Good Ideas. My dress wasn't uncomfortable to wear or difficult to manage as wedding dresses go, but it was more effort than my normal clothes and I was starting to get really quite tired. Also, dinner was bangers and mash with vegetables and gravy. Getting changed was definitely a good way forwards.

The bangers and mash had another effect we hadn't predicted. All those little pirates, who'd spent the day hopped up on sugar enjoying sunshine, a big grassy area to play on, and an unlimited-access bouncy castle, suddenly had bellies full of a nice solid hot dinner, and very nearly fell asleep on the spot. It was magic.

The last guests left a little while after 9pm. By that point I wasn't making sense any more, but I was very happy and had enjoyed the most wonderful day.

Wedding Ceremony

2011-05-24T09:06:00.002+01:00

Evilstevie and I were married at noon on Saturday, 21 May, 2011.

The day was everything we wanted it to be. Our friends and families all made a big effort to ensure that the day was as relaxed and happy as it could possibly be.

I don't have any pictures yet. There are about 700 pictures on Evilstevie's camera but we haven't had a chance to go through them! The lovely Carie has put up a few of her shots which can be seen on her blogpost here (I'm afraid I can't link them as images).

What we do have, though, is the text of our vows. Evilstevie had gone to a lot of trouble setting up our home server to tweet the vows at the appropriate time (much like he did for the engagement proposal). Unfortunately, this was thwarted by our plan of having our Wii set up at the reception - on the morning of the wedding, in the hurry of extracting the TV, Wii, and associated cables from the heap of tech in the corner of our lounge, the cable connecting the server to the internet got dislodged, and although the script fired as planned, it had nowhere to fire to.

So, for internet friends, here are our wedding vows, and the reading a friend did afterwards. If you want the music as well, here's a YouTube link for my entrance music - Reunion by John Williams, from the AI: Artificial Intelligence soundtrack.

Evilstevie: I give you this ring as a sign of our marriage and a symbol of our love. I will always be there for you, to comfort and support you, and share in the joy and happiness of our love.
Cherish my faithfulness, my loyalty, and my trust, they are yours forever.

Mary: I give you this ring as a sign of our marriage and a symbol of our love. As we face the future together, I promise to be a companion worthy of your friendship. I promise to support your hopes, dreams, and goals. I vow to be there for you always.
When you fall, I will catch you.
When you cry, I will comfort you.
When you laugh, I will share your joy.
On this day, together with our friends and families, we can cherish the memories of our individual pasts, and create new ones, as, through our union, we accomplish more than we could alone.

Reading: A Lovely Love Story by Edward Monckton

The fierce Dinosaur was trapped inside his cage of ice. Although it was cold he was happy in there. It was, after all, HIS cage.
Then along came the Lovely Other Dinosaur.
The Lovely Other Dinosaur melted the Dinosaur's cage with kind words and loving thoughts.

'I like this Dinosaur,' thought the Lovely Other Dinosaur. 'Although he is fierce he is also tender and he is funny. He is also quite clever though I will not tell him this for now.'
'I like this Lovely Other Dinosaur,' thought the Dinosaur. 'She is beautiful and she is different and she smells so nice. She is also a free spirit which is a quality I much admire in a dinosaur.'

'But he can be so distant and so peculiar at times,' thought the Lovely Other Dinosaur. 'He is also overly fond of Things. Are all Dinosaurs so overly fond of Things?'
'But her mind skips from here to there so quickly,' thought the Dinosaur. 'She is also uncommonly keen on Shopping. Are all Lovely Other Dinosaurs so uncommonly keen on Shopping?'

'I will forgive his peculiarity and his concern for Things,' thought the Lovely Other Dinosaur. 'For they are part of what makes him a richly charactered individual.'
'I will forgive her skipping mind and her fondness for Shopping,' thought the Dinosaur. 'For she fills our life with beautiful thought and wonderful surprises. Besides, I am not unkeen on shopping either.'

Now the Dinosaur and the Lovely Other Dinosaur are old. Look at them.
Together they stand on the hill telling each other stories and feeling the warmth of the sun on their backs.
And that, my friends, is how it is with love. Let us all be Dinosaurs and Lovely Other Dinosaurs together.
For the sun is warm. And the world is a beautiful place.

Guestbook

2011-05-17T08:19:00.004+01:00

The wedding looms ever closer. The craft-project chaos of my lounge is gradually turning into stacks of boxes with neat little contents-lists stuck to them, Evilstevie has confirmed his time off work, and really, everything's on track.

I keep telling myself, and anyone who has a tizzy at me, that the venue is booked and paid for, the registrar is booked and paid for, and we have the rings - therefore a wedding will take place. Everything else is fluff.

But fluff is fun, and today's fluff is the guestbook.

The guestbook isn't really a book. We're doing it in the form of lots of luggage labels, which our guests can write on or otherwise decorate as they see fit, and pin to a line at the reception.

I'd quite like to pre-populate the line, to get the ball rolling. So here's my idea. If any blog readers who aren't coming to the wedding would like to add a message to our wedding guestbook, then pop it in the comments, or email me, and I will be able to print it out and stick it to a label.

I know to new readers this may sound a bit "internet! validate me!" - no. If you don't feel you know us, or you've nothing to say, then there's no need to say anything. It just felt a little bit strange not to include the online side of our lives in our wedding day.

Oops

2011-05-10T10:44:00.002+01:00

Should have seen this one coming, really.

For several years now I've been considered by Social Services to need help in the mornings, to get properly and safely washed, dressed, medicated and generally ready to face the day. We only took it up a few months ago (whole other story), and it has been working well and has made a very welcome difference to my life.

This morning my assistant arrived and rang the doorbell - some people have key safes but since I can usually get to the door one way or the other, we've chosen not to have one. Normally that's fine, but today, the Roomba was running. I did not hear the doorbell. I did not hear the doorbell again. I did not hear the knock on the door or the call through the letterbox. The blinds were all shut (unsurprisingly as I was not yet dressed). The poor woman ended up basically running around the house knocking on all the windows with increasing panic. Eventually she reached the one by which I was sitting, but by the time I'd levered myself up to crack the blinds and see who was knocking, she'd already run back round to the front of the house and was about to call base and ask them to ring me... she was extremely relieved when I opened the door.

We've decided that while the Roomba is a wonderful thing, it's best not run when I'm expecting my care calls.

Peeling petals

2011-05-07T07:20:00.002+01:00

Gazing down the final straight towards w-day.

I was a bit panicky over the bank holidays - not about the getting married bit, just about the co-ordinating the wedding bit. I don't think the fuss and drama around the Royal wedding helped at all. I mean, on the one hand, I don't have to try and decorate the entirety of Westminster Abbey with actual real-life still-growing trees, on the other hand, I would love to have access to start decorating the venue a week beforehand and a couple of dozen helpers in hi-viz jackets.

Anyway. Since then, we've settled a lot of the accounts that we had so far only paid deposits on, and we've checked and re-checked the budget to make sure that we definitely have all the money we need for the few on-the-day costs, and having that all sorted out makes both of us feel a lot better. Wedding Zen is returning, and the to-do list is down to chasing the last handful of RSVPs and finishing off a few details.

One of these details is the petals. I had this absolutely terrific idea that a few petals might be a nice finishing touch to the room decoration. There are four options for this:

Real petals, fresh, ripped off the heads of actual flowers shortly before the ceremony begins. This option was rejected because no one's going to want to dirty their wedding clothes by ripping up flowers that morning, and also the venue might get unhappy about juicy fresh vegetation getting crushed underfoot and then being left to rot.

Real petals, dried, basically pot pourri. This option was rejected because they look manky.

Fake petals, fabric. Wild variations in quality and quite expensive. There was also the consideration that the petals may get blown outdoors and the venue have asked us to be sure to only use biodegradable confetti.

Fake petals, paper. Again, wild variations in quality, but biodegradable and also a bit cheaper than fabric.

All things considered, I decided to go with paper petals. I ordered them from eBay - about £10 for about 1,000 of them. They're lovely - the colours are pretty, the quality is terrific, they're proper three-dimensional petal shapes, it's exactly the look I wanted.

The only thing I didn't realise, and I'm posting this as a warning to other brides, is that paper petals... well, I'm not sure if it's how they're dyed or how they're cut or shaped or packaged or stored, but the fact is that the fibres are ever so slightly stuck together. It's like when you spill a drink on a book, and then when it dries, the fibres of the pages are slightly stuck. You can pull them apart quite easily, but it also has to be done with care to avoid tearing, and one page at a time.

Or in this case, one petal at a time.

1,000 of the damn things. The box is full of little bags, and each little bag has five compressed stacks of about 80 petals each.

What makes it even more fun is that, once separated, 160 petals is more than enough to completely fill a 2.6l tupperware box. Can't squash them down, that would defeat the object of having bought these nice three-dimensional-shape petals. So they have to be reassembled into stacks, uniform enough to minimise storage space, but also loose enough to ensure that the paper fibres don't meld again.

I'm about three-quarters of the way through, but it is taking FOREVER.

It is possible

2011-05-01T10:10:00.003+01:00

Today is Blogging Against Disablism Day 2011, hosted once again at Diary Of A Goldfish - and many thanks to her for this.

Last year I was in the early stages of wedding planning, and meeting with barriers, discrimination and disablism every step of the way, so my post, It's Not Bridezilla To Want Access, detailed a few of the difficulties I was running up against.

This year... well, the wedding is this month and I can't really think about much else. So this is a short, wedding-focused post. You'll forgive me for not posting the exact date, time and location online until after the fact.

I am pleased to be able to report that we have, after a great deal of time and effort, managed to find sensible, flexible suppliers for everything we needed and wanted. The registrars have agreed that it's not necessary to ask us or our guests to stand during the ceremony. The venue rep has been awesome about communicating mainly via email as this is easiest for me. We went out of area and found a couple of accessible dress shops who eagerly helped me to try and find the perfect dress. A lovely family business who deal mainly with repairs and alterations to leather motorbike clothing have created me a beautiful pair of ivory wheelchair gloves with padded leather palms, that are both practical and feminine. A terrific Folksy seller has created our flowers, including an extremely custom corsage for me to wear on my wrist for the ceremony, that is also the perfect shape and size to adorn the controls for my wheelchair during the reception.

The triumph is bittersweet. I really do feel that I should have been able to expect businesses to be accessible. I feel that, in 2011, I should be able to make my decisions based on things like cost, quality, and attractiveness of product, rather than on which businesses were willing to have me as a customer.

All that aside though - I'm getting married. I'm disabled, I'm overweight, I have bad skin, small boobs, and terrible posture, I wear glasses, I have extremely low earning potential, and later this month I am marrying a man who was entirely uninterested in the amorous advances of at least two of the non-disabled guests attending. As a couple that faces disablism (because yes, it affects him too) every day of our lives, we have managed to put together what promises to be a wonderful, enjoyable, accessible wedding ceremony and a relaxed, personal reception party. I believe as a society we CAN get past disablism.

Deserving

2011-04-22T08:13:00.003+01:00

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:

The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".

No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:

"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."

Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

Oh but it's easy!

2011-04-13T14:37:00.003+01:00

Anyone who's ever so much as hovered on the fringes of wedding planning will have seen one of these articles. Shocking rise in the cost of the average wedding, picture of tasteless pink bride standing next to cake the size of a respectable starter home, reassurance that it doesn't have to be that way, followed by awesome photographs of a stunning wedding and reception that, according to the bride (I'm afraid it is usually the bride) involved, cost less than £500 and a marvellous day was had by all.

Great! you think, and start reading through for hints and tips. And then you start to realise that what she actually means is that the wedding expenses that were significant enough to be counted only cost her and her husband £500, and she either hasn't realised the cash value of other people's contributions, or she's choosing not to count them in a bid to gain moral high ground on the basis of frugality.

You realise that the wedding was conducted by Uncle John the vicar, who was able to waive all fees from venue hire to bell ringers, and jolly the Church Ladies into making that week's floral decorations in the preferred wedding colours.

You find that the dress (normal shop price: about £800) was made by the bride's ex-housemate who just happens to be a wedding dress designer/seamstress, that the fabulous cake (normal shop price: about £400) was donated by Auntie Linda who just happens to be a baker and decorator of wedding cakes, and that the food (normal shop price about £20 per head) is being provided free of charge by the groom's parents who just happen to own a catering business. A cousin who's on a hairdressing course, an uncle with a posh or classic car, and a friend-of-a-friend who's just setting up in the DJ business are optional.

You are told that "it's easy" to make your own invitations and place cards and so on for a modest outlay of about £50. Assuming, of course, that you have already invested several hundred pounds in a decent trimmer and a selection of corner punches, a proper craft knife and cutting board, a decent printer, endless accessories like glue dots, pritt stick, and backing card - and assuming that you possess a certain degree of design aptitude.

Next you discover that the amazing photos were taken by a professional. The fact that a decent professional photographer will often charge a three or even four-figure sum for shooting a wedding isn't mentioned - the photographer was either another person the couple just happened to know who owed them a massive favour, or he was hired by the families as a gift.

Yes, it turns out that the way to have a wonderful wedding on a budget is to be surrounded by generous, interested family and friends who are already (a) professionals in wedding-related industries, (b) incredibly creative, and/or (c) prepared to spend their own money so that you don't have to. Easy! Erm...

We're spending money on professionals to take care of certain aspects of our wedding. This is not a moral issue.

We're definitely looking forward to getting married, and to having the party with our nearest and dearest, but I think we'll also be glad to escape from the insane and contradictory world of wedding planning.

Naidex

2011-04-12T14:01:00.004+01:00

Following on from my last post, I carried on in the bit-under-the-weather vein for a few days and met with repeated frustration on the balloon-quest and several other things I wanted to push forwards with. It wasn't a great week.

Nevertheless, some wonderfully good things happened - we started to get RSVPs from wedding guests, and Pip has got a decent job that actually uses his skills and qualifications, and Steve had a much-needed full weekend away with a friend. I was able to get quite a bit of rest in, and then on Tuesday, I just turned into an incredible luck magnet.

The first thing that happened on Tuesday, was that I managed to book a new balloon decoration firm.

The second wonderful thing happened - Shopmobility had received my innertubes and my wheels were fitted and ready to collect.

The third wonderful thing was that the ever-lovely Carie, ably assisted by the charming Miss Kitty, gave me a lift into town to collect the wheels. While we were about it we had a spot of lunch and cooed over lovely little baby-hats. This seems to me like a marvellous way to spend a lunchtime.

I should have bought a lottery ticket at that point, but I had to go home and recharge my batteries, physical and metaphorical, so that I would be able to thoroughly enjoy my trip to Naidex the next day.

My PA picked me up bright and early in the morning and we managed to get to the NEC with only one minor burst of getting lost (the NEC is so well signposted that several roundabouts actually have more than one exit marked as "NEC" which is generous, I'm sure, but ultimately not helpful for navigation purposes). My Blue Badge was checked and we were ushered through to the disabled parking hangar, and from there on in... it was weird. But in a good way.

I've never been to a crip-centric event before and suddenly there were these three huge halls full of companies wanting to sell me stuff. Not to prescribe like NHS/Social Services/AtW and other 'official' groups do, and not to find a way of adapting their existing product or service to find a halfway point like shops do. But to actually sell. It wasn't all or even mostly wheelchair users, but everything was accessible and there were enough of us that it felt entirely normal to be at seated height (usually I feel a bit like I'm trying to navigate a foreign world made up of steps and buttocks). I also saw at least one other person with the e-motion m15s, which was nice and made up for the man who perhaps didn't realise how loudly he was saying "f---ing show-off with fancy wheels grumblegrumble etc."

There's some wonderful inventions out there. A few of my favourites were:

A small phone, too small to be much use as a general phone, but that wasn't what it was for - it had just two buttons to be preprogrammed with emergency numbers and was small and light enough to be worn as a wristwatch (it also tells the time). Infinitely preferable to those emergency-button lanyards that reside uselessly on the bedside tables of elderly people up and down the country.

Adjustable height kitchen worktops, so that a prep space, sink, or hob can be raised or lowered at whim enabling one kitchen to be usable for multiple people with different needs in the same household - like a woman who wants to sit down and a man who's tall and dislikes having to stoop all the time.

SafeSpaces, which are basically like indoor tents. Designed with autistic kids in mind, they create a small, manageable, safe place for sleep and timeouts. They're soft, waterproof, wipe-clean, with low beds, and they're anchored to the floor 10 inches from the walls of the room so that the user can't hurt themselves. Inside, there's all sorts of sensory therapy stuff, and it was so soothing... I sort of wanted one myself!

Then there was all the tried-and-tested stuff - mobility scooters, wheelchairs, lifts, ramps - and I remember being thrilled to spot grab rails in a whole rainbow of colours rather than just boring clinical white/dark blue.

A number of Twitterers had been planning to go, and although due to the harsh realities of spooniedom some people couldn't make it, I was pleased to meet up with @GentleChaos and @FunkyFairy22 at lunchtime. My PA, although employed directly by me, has been involved with Social Services for several years, so we decided that she would go and say hello to a few familiar faces in the halls while the three of us chatted. It was marvellous, we thoroughly put the world to rights. It's been years since I met new "internet people", particularly on my own, and particularly meeting females, rather than being one of a couple of incidental females in a male-dominated group. I'd like to do it more often.

Unfortunately on the Thursday morning I woke up with no spoons (expected) and an absolutely stinking cold (wasn't quite prepared for that). Each is making the other that bit more unpleasant. However, once I've shifted the cold and can breathe through my nose again, we should be full steam ahead for the wedding!

slow progress

2011-03-26T17:19:00.003Z

I was hoping to be able to bounce in here with a post saying that, after all the things which went wrong on Wednesday, everything was back on track and totally fluffy.

Perhaps unsurprisingly, that's not the case. But things are slowly and steadily turning back to positive.

On Thursday morning I got a lift to Shopmobility, who are the nearest vendors trained and approved to carry out work on e-motion wheels. They took the tyre off and showed me the state of the inner-tube (I felt quite embarrassed) and they've ordered in new ones for me. Several friends encouraged me to try bike shops, or order online and do my own inner-tube replacements, but I'm not that keen to invalidate the warranty and insurance just to see if I can save £2 or get it done a day sooner - besides, Shopmobility schemes are worth supporting. I should be whizzing around again some time next week.

A big thing that went well is that I managed to get some affordable coloured envelopes online (from Ideal Envelopes, if anyone's wondering). I ordered them late Wednesday night, they arrived on Friday morning. I spent much of Friday writing out addresses in my Very Best Good Handwriting, and by the time Steve and I went to bed, all but one of them (waiting on a new address) was stamped, sealed, and ready to go. There was a little pang of frustration when I remembered I couldn't just trundle out to the post office with Steve (he's hurt his back and can't push the manual wheelchair either) but instead we drove around to several different post offices until we found one with wobbling-distance parking outside. UK envelopes in the box, overseas envelopes weighed and stamped for airmail by the post office clerk, and then as we went back to the car, a Royal Mail van pulled up to collect. So hopefully soon we'll start getting RSVPs!

Meanwhile, friends on Twitter and on other forums have provided a number of balloon company recommendations, so I've been phoning and emailing to try and get more quotes, and have booked an appointment to see one company next week. Hopefully I'll get something sorted out fairly soon and then everything weddingy will be right back on schedule.

Unfortunately I'm having the sort of day where being a passenger on a drive to a post office this morning wore me right out for the day - I spent most of the afternoon asleep and I'm still in bed typing this. It is therefore with a slight feeling of shame and a huge amount of gratitude that I say thank you to the protesters who marched in London today, including several of the Where's The Benefit posse. I only hope that a difference can still be made. As DavidG put it:

It’s quite simple, Mr. Milliband, we want an alternative strategy. If cuts must be made, we don’t want them to be targeted at those least able to bear them. And that is where the Labour Party is failing us. It was a Labour government that introduced ESA and ATOS screening, it was the Labour government that stood hand in hand with the Heil, the Scum and the Vexpress in demonising those of us on IB and ESA as fraudulent scroungers and under your leadership it is the Labour Party in opposition that is still supporting those policies.

People who voted for the Conservatives knew exactly what kind of ideology they were voting for and are probably very pleased about the cuts that are being made to services for poor people, disabled people, disadvantaged people, young people, and People Who Simply Aren't Our Sort Of People, but let's not pretend that Labour were or would be any better. Our political system is supposed to provide a formal means of opposition within the political system and I think the biggest motivating factor in all these protests is that meaningful opposition, carried out on our behalf by those who are supposed to represent us, is failing to take place as MPs scramble for a slice of the power pie and focus on relaxing the rules and increasing the spend on their own benefits.

Stuff going wrong

2011-03-23T18:01:00.003Z

As you can probably tell from the sparse posting, I'm not doing amazingly well at the moment.

Despite that, today was a gloriously sunny day, and I went into town fully intending to make the most of it. I had a lovely picnic lunch by the river in the park, then I went into town, planning to drop in on the shop that we had booked to do our balloon decorations for the wedding, because I figured they were a likely candidate to have some other party supplies I wanted.

They didn't.

I know they didn't, because when I rolled up to the shop, there was a big "To Let" sign over the door, and the windows were soaped over, and when I found a gap to squint through, the shop was completely empty apart from a couple of cardboard boxes. Their website had been taken offline, and their phone number just rang and rang and rang.

I can only assume they've gone bust. It's late March. The wedding is in May. I wonder if or when they were going to tell me.

So, if anyone can recommend a balloon decoration firm in the Warwickshire/West Midlands area, reasonably priced, who might still have availability for a Saturday in May, that would be helpful. Yes, I can JFGI, but I thought I'd ask for personal recommendations first.

I had a semi-fruitful search for the additional party supplies I was looking for - as in, I found some, but they were quite a bit more expensive than I could justify. Scratch that idea.

I got a cup of tea, which helped, and then started to make my way back to the other end of town to be picked up, and that was when I realised that one of my Awesome Wheels had a flat. Happily, since I was being picked up anyway, I was rescued within the hour - unhappily it's a real flat, pump it up and you can hear the air hissing out, rather than just a bit of a drop in pressure. Tomorrow I'm off to see the chaps at Leamington Shopmobility to find out how much it will cost to sort out.

I'm trying to focus on the positive - I had my lunch in the sun by the river, I did get rescued, Shopmobility will be able to get me mobile again one way or the other, and at least I found out about the balloon place now rather than in six weeks' time - but it does feel like it's been rather a crappy day.

Census 2011

2011-03-15T13:03:00.002Z

About a week ago, the 2011 UK Census dropped through our door along with more or less every other door in the country.

The instructions on the front require people to fill in the questionnaire on or as soon as possible after 27th March 2011.

This is probably why the letters page of the Times on the 9th March carried indignant missives from people complaining that they'd filled in the form already and attempted to post it back but couldn't fit it in the postbox (I'd link but it was a paper copy of the Times that I'd picked up in a McDonalds in Norwich). I think that if we applied DWP form-filling rules and charged every household who couldn't follow that instruction £50, we'd have a chunk off the deficit in no time or at least be able to fund an adult education programme in English Reading and Comprehension.

The other bit which makes me smile is the indignation about a thirty-two page form!!!!! which is considered by many members of 'alarm clock Britain' to be an astonishing amount of difficult and time consuming paperwork, while us filthy disableds are going "only 32 pages, sweet!"

Better yet, once you're past the opening questions about "how many people live here" and "list their names", there's only four pages per person and most of that is tick boxes. I can't imagine it taking anyone more than five minutes unless they live in a house full of people who are unable to fill out the form on their own behalf, in which case we'll call it half an hour but that includes finding a biro that works.

Finally, I'd like to encourage all my readers to take the advice of the excellent @Scaryduck on the thorny issue of Question 17.

Brave vs Stupid

2011-03-12T09:25:00.002Z

IF you have a painful injury or condition which manifests itself by way of inflammation...

... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.

Take the freaking ibuprofen already.

It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.

If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.

Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.

It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.

Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.

Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".

And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!

I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.

Time is ticking

2011-02-26T13:47:00.004Z

The wedding is less than three months away. I am oscillating between

(a) Everything is absolutely fine and well in hand. The venue and registrar are both completely booked and paid for so a wedding will definitely happen. Our families have had Save-The-Dates and some have booked hotel rooms so guests will be there even though the proper invitations haven't gone out yet. We have the rings, my dress, and his suit. The DIY projects are on schedule for completion within the next month. The vendors are all booked, deposits are placed, timescales are sensible, and this whole thing should come off without any difficulties at all.

and

(b) PANIC! TOO LITTLE TIME!! TOO MUCH STILL TO DO!!! EVER-DECREASING TIME UNTIL W-DAY!!!! HOW THE SHUDDERING F&%K ARE WE GOING TO GET EVERYTHING SORTED OUT BY THEN?!?!?!?!?!

To err is human...

2011-02-19T08:00:00.003Z

... but if you do it on DWP forms, you can expect a fine.

A £50 fine, to be precise, although that's just a starting figure. It could be as much as £300.

Apparently the point of this fine is to get claimants to take "responsibility" for their claims, because "I have to fill in this form right or I won't have any money for rent, bills or food" doesn't have enough impact on your life to make you take it seriously. Or something.

Leaving aside the class war bit where a bunch of millionaires (who make plenty of "mistakes" in their own benefit claims and consider £50 to be the cost of lunch) are imposing these fines on DWP claimants who are, for obvious reasons, some of the poorest people in the country for whom £50 is two weeks' groceries or more...

I'm reasonably bright. Not exceptionally so, but I have my selection of higher-tier grade GCSEs including English and Maths, I've been able to read and write since before I started primary school, most of the jobs I've held have had some sort of administrative element. I should be as well-equipped as anyone to fill out those forms correctly, and I have a distinct advantage over many claimants who are less academically inclined.

And I have made errors on my claims.

The first one, was when I first got sick and lost my job. Let's set the scene. I'm in my early twenties. I'm sick, so sick I cannot work, and more or less confined to bed so that I can manage the big bursts of effort needed to go out (I haven't yet been taught about pacing). I don't yet know what's wrong with me, so I'm scared. I have no income and the Jobcentre have given me three forms. The biggest one is for Incapacity Benefit. The next biggest is for Housing and Council Tax Benefit. The smallest - which is still some thirty or forty pages - is for Income Support, which I am told is a "safety net" in case my Incapacity claim is rejected.

Bear in mind the reason for my claim was that I was too sick to work in my mostly office-based job. I had something symptomatically akin to 'flu. I was not in a top form-filling state.

I worked on the forms as best I could. By the time I got to the IS one, time was running out, but I did my best and felt quite proud of myself for finishing it all within the deadline.

My mistake? In the Pensions section. Having ticked that no, I was not in receipt of any pensions, I was told to go to the next section of the form. So I skipped over all the questions about what type of pension do you have to the next section of the form, About Other Benefits. What I missed, was that "War Pensions", although tacked onto the end of "Pensions", was in fact a section in its own right - a one-inch strip with the single question are you in receipt of a War Pension and Yes/No tickboxes. The form was sent back to me, red-penned and with a stern letter of admonishment.

I've also made errors on my DLA forms before now, again usually at the level of missing a tickbox, although thankfully I've always caught them before sending.

The BBC article says:

The proposals also reveal that the government assumes there will be very few appeals against these fines.

Well, yes. If my incorrectly completed form and nasty letter had also included a £50 fine, I certainly wouldn't have had it in me to argue the toss, because I was too sick to do so, and THAT was the reason why I was filling in the forms in the first place.

That's the thing about benefits. You claim them when your life gets to a desperate stage. You're sick, perhaps terminally so. Your spouse has emptied the joint account and run off with So-and-so from Marketing, leaving you with a broken heart, no money and two kids who want to know where Mummy/Daddy's gone. You've finally managed to get up the courage to get out of a violent and abusive relationship even though you took nothing with you other than the clothes you stand up in. At the very least, you've lost your job. You're stressed. You're upset. You're running around trying to improve your situation and get back something which is recognisable as Your Life, whether that means you're attending countless hospital appointments or applying for countless jobs, and on top of this, the Jobcentre have presented you with over a hundred pages of forms to fill in?

And while we're at it, let's not forget the cuts to legal aid and the closures of Citizens' Advice Bureau offices which will make it even harder for people to get help filling in forms or conducting appeals. Nice one, George. Withdraw the support, thereby increasing the rate of mistakes, then charge people for those mistakes on the basis that they'll be unable to argue. It would make a wonderful Dilbert cartoon, if only it weren't targeted at real and vulnerable people at their time of need.

Minor mistakes are inevitable when people in these circumstances are filling in these forms. Fining people who can't afford to pay but aren't in a position to defend themselves, is appalling.

DWQ Part 7

2011-02-14T15:00:00.003Z

Part 7 of the Discworld Wedding Quotes project. This is the final instalment. It would include The Amazing Maurice if I had been able to find anything in there, but I couldn't, so we are simply rounding off with a short and sweet selection from Nanny Ogg's Cookbook.

“They say that the way to a man's heart is through his stomach, which just goes to show they're as confused about anatomy as they gen'rally are about everything else.”

“It is foresighted and useful for a young woman to become proficient in those arts which will keep a weak-willed man from straying. Learning to cook is also useful.”

“When I hear someone say that a husband cooks, I generally reckon it means he's got a recipe for something expensive and he does it twice a year. And then leaves the pans in the sink 'to soak'.”

On Courtship:
“It may come as a surprise that anyone needs any instructions about this, but even I was once a rather shy girl who had difficulty meeting young men. But it wore off by mid-morning when I realised what I was doing wrong.”

“We breed good men in Lancre, but I have to say sometimes they could do with a good ding around the lughole.”

“On long cold winter nights, when the young man may have come a long way, he is allowed to share a bed with the young lady, although both remain fully clothed and a bolster is put down the middle. However, since love traditionally laughs at locksmiths, it probably grins widely at a pillow full of feathers.”

"Lots of people have asked me for advice about this. They say, 'Mrs Ogg, can you just rely on there bein' a fight?' And, yes, you gen'rally can. My advice is to make sure the drink is strong enough and that people are seated right to make it happen quite soon. That way you've got it over with and can get on with things without that naggin' feelin' that something's wrong."

There we go. Thank you for reading, and I hope some brides and grooms to be find this series useful.

For me, the next step will be to shuffle these about in an Open Office Draw file, then print them out and try and do something pretty and papercrafty with them, so that they can be used as additional decorations.

Today is Valentine's Day. Steve and I have been engaged for a year and now have something less than 100 days to go until we tie the knot. We have the registrar, the venue, and the rings, so we definitely meet the basic criteria for a wedding - we even have the dress, the cake, and the full guest list complete with addresses. From here on in it should just be the frantic completion of dozens of DIY projects that seemed like a good idea when our Days Until count was still in three figures.

DWQ Part 6

2011-02-11T14:55:00.002Z

Part 6 of the Discworld Wedding Quotes project. This covers the Tiffany Aching books: The Wee Free Men, A Hat Full Of Sky, Wintersmith, and I Shall Wear Midnight.

The Wee Free Men

“She'd never really liked the book. It seemed to her that it tried to tell her what to do and what to think. Don't stray from the path, don't open that door, but hate the wicked witch because she is wicked. Oh, and believe that shoe size is a good way of choosing a wife.”

“'We've scrubbed up quite nice, ye ken,' Rob Anybody said. 'Some o' the lads actually had a bath in the dewpond, e'en though 'tis only May, and Big Yan washed under his arms for the first time ever, and Daft Wullie has picked ye a bonny bunch of flowers...'”

Neither Rob nor Tiffany want to get married, but custom dictates that they must be betrothed, and that the bride must name the day...
“Tiffany took a deep breath. 'At the end of the world is a great big mountain of granite rock a mile high,' she said. 'And every year, a tiny bird flies all the way to the rock and wipes its beak on it. Well, when the little bird has worn the mountain down to the size of a grain of sand... that's the day I'll marry you, Rob Anybody Feegle!'
Rob Anybody's terror turned to outright panic, but then he hesitated and, very slowly, started to grin.
'Aye, guid idea,' he said slowly. 'It doesnae do tae rush these things.'
'Absolutely,' said Tiffany.
'And that'd gi' us time tae sort oout the guest list an a' that,' the pictsie went on.
'That's right.'
'Plus there's a' that business wi' the wedding dress and buckets o' flowers and a' that kind of stuff,' said Rob Anybody, looking more cheerful by the second. 'That sort o' thing can tak' for ever, ye ken.'”

A Hat Full of Sky

“He hadn't been a husband for very long, but upon marriage men get a whole lot of extra senses bolted into their brain, and one is there to tell a man that he's suddenly neck deep in real trouble.”

“If there's one thing a Feegle likes more than a party, it's a bigger party, and if there's anything better than a bigger party, it's a bigger party with someone else paying for the drink.”

Wintersmith

“'Aye, but the boy willnae be interested in marryin',' said Slightly Mad Angus.
'He might be, one day,' said Billy Bigchin, who'd made a hobby of watching humans. 'Most bigjob men get married.'
'They do?' said a Feegle, in astonishment.
“Oh, aye.'
'They want to get married?'
'A lot o' them do, aye,' said Billy.
'So there's nae more boozin', stealin' an' fighting?'
'Hey, ah'm still allowed some boozin' an' stealin' an' fightin'!' said Rob Anybody.
'Aye, Rob, but we cannae help noticin' ye also have tae do the Explainin', too,' said Daft Wullie.”

“She'd sometimes wondered if she'd get married one day, but she was definite that now was too soon for 'one day'.”

“'This lad Roland who is not your young man,' said Nanny, when Tiffany had paused for breath. 'Thinking of marrying him, are you?'
Don't lie, the Third Thoughts insisted.
'I... well, your mind comes up with all kinds of things when you're not paying attention, doesn't it?' said Tiffany. 'It's not like thinking.'”

The Nac Mac Feegles are debating Romance...
“'So it is like how babbies are made?' said Daft Wullie.
'No, 'cos even beasties know that but only people know aboot Romancin',' said Rob. 'When a bull coo meets a lady coo he disnae have tae say, “My heart goes bang-bang-bang when I see your wee face,” 'cos it's kinda built in tae their heads. People have it more difficult. Romancin' is verrae important, ye ken. Basically it's a way the boy can get close to the girl wi'oot her attackin' him and scratchin' his eyes oot.'”

I Shall Wear Midnight

“Rob Anybody put a finger to his lips. 'Ah, weel, it can be a wee bit difficult with womenfolk arguing, ye ken. Keep right oot of it, if ye'll tak' ma advice as a married man. Any man who interferes in the arguin' of women is gonnae find both of them jumping up and doon on him in a matter o' seconds.'”

“'There's a reason for all the superstitions. The time around weddings and funerals is fraught with stress for all concerned, except in the case of the funeral, for the chief, as it were, player.'”

“'I hear that the lads came back from their stag night fun,' said Nanny, 'but it seems to me they've forgotten where they left the groom. I don't think he is going to go anywhere, though. They are pretty certain they took his trousers down and tied him to something.' She coughed. 'That's generally the usual procedure. Technically the best man is supposed to remember where, but they found him and he can't remember his own name.'”

On the word “buxom”...
“'Yes,' said the bride-to-be. 'I'm afraid I'm not, very, um, large in that department.'
'That would have been a bit unfortunate a couple of hundred years ago because the wedding service in those days required a bride to be buxom towards her husband.'
'I'd have had to push a cushion down my bodice!'
'Not really; it used to mean kind, understanding and obedient,' said Tiffany.
'Oh, I can do those,' said Letitia. 'At least, the first two,' she added with a grin.”

“Weddings can be quite similar to funerals in that, apart from the main players, when it's all over, people are never quite sure what they should be doing next, which is why they see if there is any wine left.”

DWQ Part 5

2011-02-09T11:14:00.002Z

Part 5 of the Discworld Wedding Quotes project. This covers books 28 - 32 of the series: Monstrous Regiment, Going Postal, Thud!, Making Money, and Unseen Academicals. It also includes the graphic novel The Last Hero and the OOK! Ankh-Morpork Librarians' Award - Children's Winner Where's My Cow?

Monstrous Regiment

“His wife's long illness and Paul's long absence had taken a lot out of her father. Polly was glad some of it was being put back. The old ladies who spent their days glowering from their windows might spy and peeve and mumble, but they had been doing that for too long. No one listened any more.”

“'Sorry, what was that?' said Polly.
'Going to find my husband,' said Shufti, only a little bit louder.
'Oh, dear. How long had you been married?' said Polly, without thinking.
'...not married yet...' said Shufti, in a voice as tall as an ant.
Polly glanced down at the plumpness of Shufti. Oh, dear.”

“'There's a kind of beetle where she bites his head off right while he's exercisin' his conjugals, and that's what I call serious grief. On the other hand, from what I heard he carries on regardless, so maybe it's not the same for beetles.'”

Going Postal

“Would you like to have dinner tonight?”
“I like to have dinner every night. With you? No. I have things to do. Thank you for asking.”

Thud!

“'Lady Sybil sighed. 'I think I shall have to have a word with Havelock about the hours he makes you keep,' she said. 'It's not doing you any good, you know.'
'It's the job, dear. Sorry.'
'It's just as well I got the cook to make up a flask of soup, then.'
'You did?'
'Of course. I know you, Sam.'”

“'And incidentally, tomato ketchup is not a vegetable,' Sybil added. 'Not even the dried stuff around the top of the bottle.'”

“Usually she got her own way and he was happy to give it to her, but the unspoken agreement was that when he really insisted, she listened.”

“Against all common sense, he agreed with Sybil. Home was where they were together.”

“”But it was a wife thing. She took such a... a pride in him. He could never work out why.”

Making Money

“'Do you have a young lady?' she asked, raising the glass.
'Yes.'
'Does she know what you're like?'
'Yes. I keep telling her.'
'Doesn't believe you, eh? Ah, such is the way of a woman in love,' sighed Mrs Lavish.
'I don't think it worries her, actually. She's not your average girl.'”

“Moist drummed his fingers on the desk. A year ago he'd asked Adora Belle Dearheart to be his wife, and she'd explained that in fact he was going to be her husband. It was going to be... well, it was going to be some time in the near future, when Mrs Dearheart finally lost patience with her daughter's busy schedule and arranged the wedding herself.”

“'I think my secretary is, uh, getting sweet on me. Well, I say secretary, she's sort of assumed that she is.'
Some fiancées would have burst into tears or shouted. Adora Belle burst out laughing.”

“'He acted as if he'd never seen a woman before!'
'He's just not used to things that don't come with a manual,' said Moist.
'Hah,' said Adora Belle. 'Why is it only men get like that?'
Earns a tiny wage working for golems, thought Moist. Puts up with graffiti and smashed windows because of golems. Camps out in wildernesses, argues with powerful men. All for golems. But he didn't say anything, because he'd read the manual.”

“'It Does Not Say Anything About Dusting Under The Floor In Lady Waggon's Book Of Household Management.'
'Gladys, a man may be dying under there!'
'I See. That Would Be Untidy.' The beams rattled under a blow. 'Lady Waggon Says That Any Bodies Found During A Week-End Party Should Be Disposed Of Discreetly, In Case Of Scandal.'”

“…the staff had realized what their ears had heard, and closed in on the couple, the women drawn to the soon-not-to-be-Miss Drapes by the legendarily high gravity of an engagement ring, while the men went from slapping Mr. Bent on the back to the unthinkable, which involved picking him up and carrying him around the room on their shoulders.”

Unseen Academicals

“'Writing a poem is often the way to the intended's heart,' said Nutt.
Trev brightened. 'Ah, I'm good with words. If I wrote 'er a letter, you could give it to 'er, right? If I write it on posh paper, something like, let's see... “I think you are really fit. How about a date? No hanky panky, I promise. Luv, Trev.” How does that sound?'
'The soul of it is pure and noble, Mister Trev. But, ah, if I could assist in some way...?'”

Nutt has written a poem for Trev to give to Juliet... “Broadly speaking, sir, it carries the message you have asked for, which is to say 'I think you're really fit. I really fancy you. Can we have a date? No hanky panky, I promise.' However, sir, since it is a love poem, I have taken the liberty of altering it slightly to carry the suggestion that if hanky or panky should appear to be welcomed by the young lady she will not find you wanting in either department.”

“'There is to be no sexual congress.'
This did not meet with the reaction he had expected.
'That means talking about it, doesn't it?' said the Chair of Indefinite Studies.
'No, that's oral sex,' said Rincewind.
'No, that's listening to it.'”

The Last Hero

“'How about Pamdar the Witch Queen?' said Evil Harry. 'Now there was--'
'Retired,' said Cohen.
'She'd never retire!'
'Got married,' Cohen insisted.
'But she was a devil woman!'
'We all get older, Harry. She runs a shop now. Pam's Pantry. Makes marmalade,' said Cohen.
'What? She used to queen it in a throne on top of a pile of skulls!'
'I didn't say it was very good marmalade.'”

Where's My Cow?

“Hooray, hooray, what a wonderful day, for I have found my cow!”

DWQ Part 4

2011-02-08T18:04:00.003Z

Part 4 of the Discworld Wedding Quotes project. This covers books 22 - 27 of the series: The Last Continent, Carpe Jugulum, Fifth Elephant, The Truth, Thief of Time, and Night Watch.

The Last Continent

“'I don't think I'm related to any apes,' said the Senior Wrangler thoughtfully. 'I mean, I'd know, wouldn't I? I'd get invited to their weddings and so on. My parents would have said something like, “Don't worry about Uncle Charlie, he's supposed to smell like that,” wouldn't they?'”

“Wizards lack the HW chromosome in their genes. Feminist researchers have isolated this as the one which allows people to see the washing-up in the sinks before the life forms growing there have actually invented the wheel.”

“'So how exactly does it work, then?' said the Senior Wrangler. 'A female baboon sees a male baboon and says, “My word, that's a very colourful bottom and no mistake, let us engage in... nuptial activity”?'
'I must say I've often wondered about that sort of thing myself,' said the Lecturer in Recent Runes. 'Take frogs. Now, if I was a lady frog looking for a husband, I'd want to know about, well, size of legs, competence at catching flies-'
'Length of tongue,' said Ridcully. 'Dean, will you please take something for that cough?'”

“On these occasions when he had spent some time in the intimate company of a woman, it was generally when she was trying to either cut his head off or persuade him to a course of action that would probably get someone else to do it. When it came to women he was not, as it were, capable of much fine-tuning.”

Carpe Jugulum

“'It's amazing what a wife can do if she knows her own mind, or minds in your case, course. Look at King Verence the First, for one. He used to toss all his meat bones over his shoulder until he was married and the Queen made him leave them on the side of the plate. I'd only bin married to the first Mr Ogg for a month before he was getting out of the bath if he needed to pee. You can refine a husband.'”

Magrat is teasing Nanny Ogg that Igor has a crush on her...
“'I think he's a bit of a romantic, actually,' said Magrat.
'Oh, I don't know, I really don't,' said Nanny. 'I mean, it's flattering and everything, but I really don't think I could be goin' out with a man with a limp.'
'Limp what?'
Nanny Ogg had always considered herself unshockable, but there's no such thing. Shocks can come from unexpected directions.
'I am a married woman,' said Magrat, smiling at her expression. And it felt good, just once, to place a small tintack in the path of Nanny's carefree amble through life.”

Magrat is musing on married life...
“'But now I understand what your jokes were about.'
'What, all of them?' said Nanny, like someone who'd found all the aces removed from their favourite pack of cards.
'Well, not the one about the priest, the old woman and the rhinoceros.'
'I should just about hope so!' said Nanny. 'I didn't understand that one until I was forty!'”

More vampires...
“The Countess clutched his arm. 'Oh, this does so remind me of our honeymoon,' she said. 'Don't you remember those wonderful nights in Grjsknvij?'
'Oh, fresh morning of the world indeed,' said the Count solemnly.
'Such romance... and we met such lovely people, too. Do you remember Mr and Mrs Harker?'
'Very fondly. I recall they lasted nearly all week.'”

Fifth Elephant

“A marriage is made up of two people who are prepared to swear that only the other one snores.”

“Sam Vimes could parallel-process. Most husbands can. They learn to follow their own line of thought while at the same time listening to what their wives say. And the listening is important, because at any time they could be challenged and must be ready to quote the last sentence in full. A vital additional skill is being able to scan the dialogue for telltale phrases, such as 'and they can deliver it tomorrow' or 'so I've invited them for dinner' or 'they can do it in blue, really quite cheaply'.”

“She was proud of Sam. He worked hard for a lot of people. He cared about people who weren't important. He always had far more to cope with than was good for him. He was the most civilized man she'd ever met. Not a gentleman, thank goodness, but a gentle man.”

“'My husband is a little unwell at the moment,' said Serafine, in the special wife voice which Vimes recognised as meaning 'He thinks he's fine right now but just you wait until I get him alone.'”

The Truth

“'You're not going to kill anyone, are you?'
'Miss, we don't do that sort of thing!'
Sacharissa looked a little disappointed. She'd been a respectable young woman for some time. In certain people, that means there's a lot of dammed-up disreputability just waiting to burst out.”

“William had never seen anyone to whom the word 'harangued' could be so justifiably applied. It meant someone who'd been talked at by Sacharissa for twenty minutes.”

Thief of Time

“Wen considered the nature of time and understood that the universe is, instant by instant, re-created anew. Therefore, he understood, there is, in truth, no Past, only a memory of the Past. Blink your eyes, and the world you see next did not exist when you closed them. Therefore, he said, the only appropriate state of the mind is surprise. The only appropriate state of the heart is joy. The sky you see now, you have never seen before. The perfect moment is now. Be glad of it.”

“'We're having rabbit,' Mrs War said. 'I'm sure I can make it stretch to three.'
War's big red face wrinkled. 'Do I like rabbit?'
'Yes, dear.'
'I thought I liked beef.'
'No, dear. Beef gives you wind.'
'Oh.' War sighed. 'Any chance of onions?'
'You don't like onions, dear.'
'I don't?'
'Because of your stomach, dear.'
'Oh.'
War smiled awkwardly at Death. 'It's rabbit,' he said.
Despite himself, Death was fascinated. He had never come across the idea of keeping your memory inside someone else's head.”

“According to the food standards of the great chocolate centres in Borogravia and Quirm, Ankh-Morpork chocolate was formally classed as 'cheese' and only escaped, through being the wrong colour, being defined as 'tile grout'.”

“Against one perfect moment, the centuries beat in vain.”

Night Watch

“'Oh dear.' The lady gave him a smile. 'You are incorruptible?'
Oh dear, here we go again, thought Vimes. Why did I wait until I was married to become strangely attractive to powerful women? Why didn't it happen to me when I was sixteen? I could have done with it then.
He tried to glare, but that probably only made it worse.”

“'You don't have to ask him, Rutherford, it's his duty to protect us,' snapped the woman who was standing beside the man with an air of proprietorship. Vimes changed his mind about the man. Yes, he had that furtive look of a timid domestic poisoner about him, the kind of man who would be appalled at the idea of divorce but would plot womanslaughter every day. And you could see why.”

“Lord Albert Selachii didn't much like parties. There was too much politics.”

“'Ah, you must be the lady from Genua,' he said, taking her hand. 'I have heard so much about you.'
'Anything good?' said Madam.
His lordship glanced across the room. His wife appeared to be deep in conversation. He knew to his cost that her wifely radar could fry an egg half a mile away. But the champagne had been good.
'Mostly expensive,' he said.”

DWQ Part 3

2011-02-07T11:42:00.002Z

Part 3 of the Discworld Wedding Quotes project. This covers books 15 - 21 of the series: Men At Arms, Soul Music, Interesting Times, Maskerade, Feet Of Clay, Hogfather, and Jingo.

Men At Arms

“Sergeant Colon had been happily married for years, perhaps because he and his wife arranged their working lives so that they only met occasionally, normally on the doorstep.”

“It takes a very special and strong-minded kind of atheist to jump up and down with their hand clasped under their other armpit and shout, 'Oh, random fluctuations in the space-time continuum!' or 'Aaargh, primitive and outmoded concept on a crutch!'”

“She vaguely suspected that Carrot was trying to court her. But, instead of the usual flowers or chocolates, he seemed to be trying to gift-wrap a city.”

“As for Gaspode, he was resigning himself to a life without love, or at least any more than the practical affection experienced so far, which had consisted of an unsuspecting chihuahua and a brief liaison with a postman's leg.”

“The service itself was going to be performed by the Dean, who had carefully made one up; there was no official civil marriage service in Ankh-Morpork, other than something approximating to 'Oh, all right then, if you really must.'”

“'And the best man?'
'What?'
'The best man. You know? He hands you the ring and has to marry the bride if you run away and so on. The Dean's been reading up on it, haven't you, Dean?'
'Oh, yes,' said the Dean, who'd spent all the previous day with Lady Deidre Waggon's Book Of Etiquette. 'She's got to marry someone once she's turned up. You can't have unmarried brides flapping around the place, being a danger to society.'”

Soul Music
Strangely, I couldn't find anything at all in Soul Music.

Interesting Times

“It was, as always, a matter of protocol. Of discretion. Of careful etiquette. Of, ultimately, alcohol. Or at least the illusion of alcohol.”

Maskerade

“Of course, it was nothing but an old superstition and belonged to the unenlightened days when 'maiden' or 'mother' or ... the other one ... encompassed every woman over the age of twelve or so, except for maybe nine months of her life. These days, any girl bright enough to count and sensible enough to take Nanny's advice could put off being at least one of them for quite some time.”

“And pretty soon now young Mildred Tinker's mother would have a quiet word with Mildred Tinker's father, and he'd have a word with his friend Thatcher and he'd have a word with his son Hob, and then there'd be a wedding, all done in a properly civilised way except for maybe a black eye or two.”

“While kissing initially seemed to have more charms than cookery, a stolid Lancre lad looking for a bride would bear in mind his father's advice that kisses eventually lost their fire but cookery tended to get even better over the years, and direct his courting to those families that clearly showed a tradition of enjoying their food.”

“Agnes's life unrolled in front of her. It didn't look as thought it were going to have many high points. But it did hold years and years of being capable and having a lovely personality. It almost certainly held chocolate rather than sex and, while Agnes was not in a position to make a direct comparison, and regardless of the fact that a bar of chocolate could be made to last all day, it did not seem a very fair exchange.”

“Nanny enjoyed music, as well. If music were the food of love, she was game for a sonata and chips at any time.”

“They say that Queen Ezeriel of Klatch had a squint, but that didn't stop her having fourteen husbands, and that was only the official score.”

Feet Of Clay

“Good old Sybil - although she did tend to talk about curtains these days, but Sergeant Colon had said this happened to wives and was a biological thing and perfectly normal.”

“Words In The Heart Can Not Be Taken”

Hogfather
I couldn't find anything wedding-related in Hogfather, but I did like this computer-related one which resonates to any computer user who has been designated as their family's tech support...

“Hex worried Ponder Stibbons. He didn't know how it worked, but everyone else assumed that he did.”

Jingo

“'You will try to look dignified, won't you?' said Lady Sybil, adjusting his cloak.
'Yes, dear.'
'What will you try to look?'
'Dignified, dear.'
'And please try to be diplomatic.'
'Yes, dear.'
'What will you try to be?'
'Diplomatic, dear.'
'You're using your “henpecked” voice, Sam.'
'Yes, dear.'
'You know that's not fair.'”

“'Sam?'
Vimes looked up from his reading.
'Your soup will be cold,' said Lady Sybil from the far end of the table. 'You've been holding that spoonful in the air for the last five minutes by the clock.'
'Sorry, dear.'
Belatedly, his nuptial radar detected a certain chilliness from the far side of the cruet.
'Is, er, there something wrong, dear?' he said.
'Can you remember when we last had dinner together, Sam?'
'Tuesday, wasn't it?'
'That was the Guild of Merchants' annual dinner, Sam.'
Vimes's brow wrinkled. 'But you were there too, weren't you?'”

DWQ Part 2

2011-02-05T13:01:00.002Z

Part 2 of the Discworld Wedding Quotes project. This covers books 11 - 14 of the series: Reaper Man, Witches Abroad, Small Gods, and the one everyone thinks of as the wedding book, Lords and Ladies.

Reaper Man

“'And you're a vampire too, Countess Notfaroutoe?' Windle Poons enquired politely.
The Countess smiled. 'My vord, yes,' she said.
'By marriage,' said Arthur.
'Can you do that? I thought you had to be bitten,' said Windle.
'I don't see why I should have to go around biting my wife after thirty years of marriage, and that's flat,' said the Count.”

“Bill Door was no good at reading faces. It was a skill he'd never needed. He stared at Miss Flitworth's frozen, worried, pleading smile like a baboon looking for meaning in the Rosetta Stone.”

For some quite complicated reasons, Death, as his alter-ego Bill Door, is taking Miss Flitworth to a dance. Not being experienced in these matters, he falls back on clichés...
“'Bill Door? You gave me quite a start-'
'I have brought you some flowers.'
She stared at the dry, dead stems.
'Also some chocolate assortment, the sort ladies like.'
She stared at the black box.
'Also here is a diamond to be friends with you.'”

Witches Abroad

“When Desiderata Hollow was a girl, her grandmother had given her four important pieces of advice to guide her young footsteps on the unexpectedly twisting pathway of life. They were:
Never trust a dog with orange eyebrows.
Always get the young man's name and address.
Never get between two mirrors.
And always wear completely clean underwear every day because you never knew when you were going to be knocked down and killed by a runaway horse and if people found you had unsatisfactory underwear on, you'd die of shame.”

“The coachmen and footmen were sitting in their shed at one side of the stable yard, eating their dinner and complaining about having to work on Dead Night. They were also engaging in the time-honoured rituals that go therewith, which largely consist of finding out what their wives have packed for them today and envying the other men whose wives obviously cared more.”

“It is a universal fact that any innocent comment made by any recently-married young member of any workforce is an instant trigger for coarse merriment among his or her older and more cynical colleagues. This happens even if everyone concerned has nine legs and lives at the bottom of an ocean of ammonia on a huge cold planet. It's just one of those things.”

Small Gods
Not strictly wedding-related, but excellent life advice.

"The Turtle Moves!"

“I. This is Not a Game.
II. Here and Now, You are Alive.”

Lords and Ladies
Sorry about all the introductions. So many of these had explanations that were several pages long and references buried in the opening sections of the book. I've done my best to condense.

King Verence has just proposed to Magrat, leaving her rather nonplussed as it was not the proposal she had hoped for...
“Perhaps that was normal. Kings were busy people. Magrat's experience of marrying them was limited.”

“'Nanny, would you like to be a bridesmaid?'
'Not really, dear. Bit old for that sort of thing.' Nanny hovered. 'There isn't anything else you need to ask me, though, is there?'
'What do you mean?'
'What with your mum being dead and you having no female relatives and everything...'
Magrat still looked puzzled.
'After the wedding, is what I'm hinting about,' said Nanny.
'Oh, that. No, most of that's being done by a caterer.'”

On the difficulties of arranging a royal wedding...
“It's different, for royalty. For one thing, you've already got everything. The traditional wedding list with the complete set of tupperware and the twelve-piece dining set looks a bit out of place when you've already got a castle...”

On the difficulties of arranging a royal wedding...
“And then there's the guest list. It's bad enough at an ordinary wedding, what with old relatives who dribble and swear, brothers who get belligerent after one drink, and various people who Aren't Talking to other people because of What They Said About Our Sharon. Royalty has to deal with entire countries who get belligerent after one drink, and entire kingdoms who have Broken Off Diplomatic Relations after what the Crown Prince Said About Our Sharon.”

Granny Weatherwax and Archchancellor Ridcully, once teenage sweethearts, meet again for the first time in decades...
“- there should have been violins. The murmur of the crowd should have faded away, and the crowd itself should have parted in a quite natural movement to leave an empty path between her and Ridcully.
There should have been violins. There should have been something.
There shouldn't have been the Librarian accidentally knuckling her on the toe on his way to the buffet, but this, in fact, there was.
She hardly noticed.”

It's the evening before her wedding, and Magrat has locked herself in her room and is refusing to talk to her groom-to-be...
“'Tell you what,' said Nanny, patting him on the back, 'you go and preside over the Entertainment and hobnob with the other nobs. I'll see to Magrat, don't you worry. I've been a bride three times, and that's only the official score.'
'Yes, but she should-'
'I think if we all go easy on the “shoulds”,' said Nanny, 'we might all make it to the wedding.'”

“Nanny Ogg was an attractive lady, which is not the same thing as being beautiful. She fascinated Casanunda. She was an incredibly comfortable person to be around, partly because she had a mind so broad it could accommodate three football fields and a bowling alley.”

Magrat tries on the wedding dress Verence has ordered for her...
“It fitted. Or rather, it didn't fit but in a flattering way. Whatever Verence had paid, it had been worth it. The dressmaker had done cunning things with the material, so that it went in where Magrat went straight up and down and billowed out where Magrat didn't.”

“'That's the thing about the future. It could turn out to be anything. And everything.'”

“Nanny said, 'Funny to think of our Magrat being married and everything.'
'What do you mean, everything?'
'Well, you know - married,' said Nanny. 'I gave her a few tips. Always wear something in bed. Keeps a man interested.'
'You always wore your hat.'
'Right.'”

“'I thought the wedding feast was very good, didn't you? And Magrat looked radiant, I thought.'
'I thought she looked hot and flustered.'
'That is radiant, with brides.'”

DWQ Part 1

2011-02-04T14:31:00.002Z

Part 1 of the Discworld Wedding Quotes project. This covers the first ten books of the series: The Colour of Magic; The Light Fantastic; Equal Rites; Mort; Sourcery; Wyrd Sisters; Pyramids; Guards! Guards!; Eric; Moving Pictures.

The Colour of Magic

“Hrun met her gaze. He thought about his life, to date. It suddenly seemed to him to have been full of long damp nights sleeping under the stars, desperate fights with trolls, city guards, countless bandits and evil priests and, on at least three occasions, actual demigods - and for what? Well, for quite a lot of treasure, he had to admit - but where had it all gone? Rescuing beleaguered maidens had a certain passing reward, but most of the time he'd finished up by setting them up in some city somewhere with a handsome dowry, because even the most agreeable ex-maiden became possessive and had scant sympathy for his efforts to rescue her sister sufferers.”

The Light Fantastic

“'What is it that you look for in a woman now?'
Cohen turned one rheumy blue eye on him.
'Patience,' he said.”

“'This is, uh, serious?' he said. 'You're really going to marry her?'
'Shure thing. Any objections?'
'Well, no, of course not, but - I mean, she's seventeen and you're, you're how can I put it, you're of the elderly persuasion.'
'Time I shettled down, you mean?'”

Equal Rites
I didn't find anything in Equal Rites. If you can, tell me!

Mort

“His mouth opened and shut. Mort wanted to say: thirdly, you're so beautiful, or at least very attractive, or anyway far more attractive than any other girl I've ever met, although admittedly I haven't met very many. From this it will be seen that Mort's innate honesty will never make him a poet; if Mort ever compared a girl to a summer's day, it would be followed by a short explanation of what day he had in mind and whether it was raining at the time. In the circumstances, it was just as well that he couldn't find his voice.”

“'Obviously we shouldn't get married, if only for the sake of the children.'”

“The Disc's greatest lovers were undoubtedly Mellius and Gretelina, whose pure, passionate and soul-searing affair would have scorched the pages of History if they had not, because of some unexplained quirk of fate, been born two hundred years apart on different continents.”

“Look, how about this? Let's pretend we've had the row and I've won. See? It saves a lot of effort.”

“'To be frank, I thought you were going to marry the princess.'
Mort blushed. 'We talked about it,' he said. 'Then we thought, just because you happen to rescue a princess, you shouldn't rush into things.'
'Very wise. Too many young women leap into the arms of the first young man to wake them after a hundred years' sleep, for example.'”

Sourcery

“'They'll throw you into a seraglio!'
Conina shrugged. 'Could be worse.'
'But it's got all these spikes and when they shut the door--' hazarded Rincewind.
'That's not a seraglio. That's an Iron Maiden. Don't you know what a seraglio is?'
'Um...'
She told him. He went crimson.”

“The world had suddenly separated into two parts - the bit which contained Nijel and Conina, and the bit which contained everything else. The air between them crackled. Probably, in their half, a distant orchestra was playing, bluebirds were tweeting, little pink clouds were barrelling through the sky, and all the other things that happen at times like this. When that sort of thing is going on, mere collapsing palaces in the next world don't stand a chance.”

Wyrd Sisters

“The best you could say for Magrat was that she was decently plain and well-scrubbed and as flat-chested as an ironing board with a couple of peas on it.”

“The Fool held his breath. On long nights on the hard flagstones he had dreamed of women like her. Although, if he really thought about it, not much like her; they were better endowed around the chest, their noses weren't so red and pointed, and their hair tended to flow more. But the Fool's libido was bright enough to tell the difference between the impossible and the conceivably attainable, and hurriedly cut in some filter circuits.”

A nervous Magrat has spent a couple of hours trying to improve her appearance...
“In a certain light and from a carefully chosen angle, Magrat was not unattractive. Whether any of these preparations did anything for her is debatable, but they did mean that a thin veneer of confidence overlaid her trembling heart.”

Pyramids

“He glanced down involuntarily and saw that every toenail was painted. He remembered Cheesewright telling them behind the stables one lunch-hour that girls who painted their toenails were... well, he couldn't quite remember now, but it had been pretty unbelievable at the time.”

“Deep in the duffel coat of his mind he hoped to one day find a nice girl who would understand the absolute importance of getting every detail right on a ceremonial six-wheeled ox-cart, and who would hold his glue-pot, and always be ready with a willing thumb whenever anything needed firm pressure until the paste dried.”

“'There you are, then. I knew the two of you would get along like a house on fire.' Screams, flames, people running for safety...”

Guards! Guards!

“'It's not that they don't like you, you're a steady lad and a fine worker, you'd make a good son-in-law. Four good sons-in-law. That's the trouble. And she's only sixty, anyway. It's not proper. It's not right.'”

“Sergeant Colon owed thirty years of happy marriage to the fact that Mrs Colon worked all day and Sergeant Colon worked all night. They communicated by means of notes. He got her tea ready before he left at night, she left his breakfast nice and hot in the oven in the mornings. They had three grown-up children, all born, Vimes had assumed, as a result of extremely persuasive handwriting.”

“This morning I went for a walk with Reet and showed her many interesting examples of the ironwork to be found in the city. She said it was very interesting. She said I was quite different to anyone she's ever met.”

“And then it struck Vimes that, in her own special category, she was quite beautiful; this was the category of all the women, in his entire life, who had ever thought he was worth smiling at. She couldn't do worse, but then, he couldn't do better. So maybe it balanced out. She wasn't getting any younger, but then, who was? And she had style and money and common-sense and self-assurance and all the things he didn't, and she had opened her heart, and if you let her she could engulf you; the woman was a city.
And eventually, under siege, you did what Ankh-Morpork had always done - unbar the gates, let the conquerors in, and make them your own.”

Eric

Eric wants to meet the Discworld equivalent of Helen of Troy. Rincewind objects...
“'Listen,' he said. 'We're in the middle of the most famously fatuous war there has ever been, any minute now thousands of warriors will be locked in mortal combat, and you want me to go and find this over-rated female and say, my friend wants to know if you'll go out with him. Well, I won't.'”

Moving Pictures

“'You know, this place looks familiar,' he said. 'We did our first click here. It's where I first met her.'
'Very romantic,' said Gaspode distantly, hurrying away with Laddie bounding happily around him. 'If something 'orrible comes out of that door, you can fink of it as Our Monster.'”

“'The boy isn't doing anything.'
'He's useless,' said the mouse.
'He's in love,' said Gaspode. 'It's very tricky.'
'Yeah, I know how it ish,' said the cat sympathetically. 'People throwing old boots and things at you.'
'Old boots?' said the mouse.
'That'sh what's always happened to me when I've been in love.'”

“She don't know what she wants. I do what she want, then she say, that not right, you a troll with no finer feelin', you do not understand what a girl wants. She say, Girl want sticky things to eat in a box with bow around, I make box with bow around, she open box, she scream, she say flayed horse not what she mean. She don't know what she wants.”

The Discworld Wedding Quotes Project

2011-02-04T14:04:00.010Z

It's time for another wedding project!

I've been working on this one for the best part of a year. Steve and I are both Discworld fans - you can determine the point at which we moved in together by checking at which point in the series we start to only have one copy of each book in the house - and I wanted to incorporate some Pratchett into the wedding in some way.

The wedding ceremony as described in I Shall Wear Midnight seemed somewhat impractical for a person with limited mobility, and our venue probably would have had something to say about it as well, so I settled for digging up a few choice quotes about relationships.

My first stop was the internet, but googling for "discworld wedding quotes" just seemed to turn up forum after forum where brides and grooms asked if anyone knew of Discworld quotes suitable for weddings, and not much by way of answers.

So I decided to check for myself. One book at a time. Through the currently published canon of 32 Discworld Series books, 5 Discworld for Younger Readers books, and several "extras" such as The Last Hero, Nanny Ogg's Cookbook, and of course, Where's My Cow?. It took a while.

The biggest difficulty is that Pratchett is a master of extended metaphor. You find the most beautiful descriptions of love and relationships, but you also find that you'd have to copy out three sections of five pages each of backstory, most of which would be completely irrelevant text, to explain why something like "but they went the long way, and saw the elephant," is so meaningful.

Nevertheless I now have a document with some 17 pages of Discworld quotes relating to weddings, marriages, and love in various forms. I see no point in keeping this to myself when other people clearly want the information, so I will spread them over several posts and then edit this post to link back to them.

There are some books I haven't checked - the diaries, for instance - and some whose inclusion I'm still unsure about, such as Nation and Good Omens. There will also be quite a few quotes that I've missed. Please feel free to fill any gaps.

Part One
The Colour of Magic, The Light Fantastic, Equal Rites, Mort, Sourcery, Wyrd Sisters, Pyramids, Guards! Guards!, Eric, and Moving Pictures.

Part Two
Reaper Man, Witches Abroad, Small Gods, and Lords and Ladies.

Part Three
Men At Arms, Soul Music, Interesting Times, Maskerade, Feet Of Clay, Hogfather, and Jingo.

Part Four
The Last Continent, Carpe Jugulum, Fifth Elephant, The Truth, Thief of Time, and Night Watch.

Part Five
Monstrous Regiment, Going Postal, Thud!, Making Money, and Unseen Academicals, plus The Last Hero and Where's My Cow?

Part Six
The Tiffany Aching books: The Wee Free Men, A Hat Full Of Sky, Wintersmith, and I Shall Wear Midnight.

Part Seven
The Amazing Maurice (except I couldn't find anything) and Nanny Ogg's Cookbook.

Good news

2011-02-01T08:36:00.003Z

This post is not wedding related. And truth be known, I feel guilty about posting it at a time when cuts and reforms are playing merry hell with the lives of so many of my disabled friends.

I appear to have won at Social Services, and now I don't know what to do with my good fortune.

As part of Steve going back to work, I've been reassessed. Steve's new job involves a much longer commute as well as regular trips further afield, and that in turn means that there's less expectation on him to provide my care.

This is going to get complicated so first I have to explain about Direct Payments.

Direct Payments are paid into a bank account in my name and I am the only person who can access that account and distribute the money. All contracts are between me and the PAs or agencies who I choose to employ. This gives me control over my care. To give a simple example, I could decide to skip showering on a Thursday in order to 'carry over' enough time for a long bubble-bath on Friday.

What I can't do is take the money and spend it all on sweeties and computer games. Social Services closely monitor the account to make sure that it is only spent on items and services approved in my Care Plan. I can't invest it, and it doesn't even count as my money on my tax return. And once it's gone, it's gone - if I have long bubble baths every day for a fortnight and then realise there's no money left in the account to pay the agency for the rest of the month, that's entirely my problem and my responsibility.

Supposedly this reduces the admin costs for Social Services as they are no longer the first point of contact and no longer have to manage the carers or negotiate with agencies. They identify needs and then supply the money. Choosing the best way to spend the money to meet those needs is no longer anything they have to worry about.

So I've been identified as needing 45 minutes of help with personal care each weekday. I have some interviews (sales pitches) with agencies this week and hopefully something will be set up soon. Once it's set up, there's also scope for us to call in an agency carer should I need one when Steve's away from home for longer periods - even if we had to add the extra money privately, the 'account' would be in place.

They've also changed my social care. Previously I got money for the stated purpose of employing a PA for three hours a week to help me do "out and about" things I needed help with. This was about £30 per week - most of it for the wages of the PA, the rest to cover specified necessities like Employer's Liability Insurance, placing job adverts when I need to hire a new PA, that kind of thing.

Now, my assessment says I am at risk of social isolation (the internet doesn't count, who knew) and therefore eligible for two days per week of "daytime opportunities", but thankfully identifies that it would be inappropriate to send me to a daycare centre for two days per week. So what Social Services are doing, is taking the money they would spend on my daycare centre place, and giving it to me as a Direct Payment. It is rather more than £30.

We've identified that I will continue to employ my PA for three hours each week as a baseline, but after that, it's looking a bit blank, because I simply can't think of much to do.

This is apparently an indicator that I have already become used to social exclusion.

I don't just have to use it on PA wages. For instance I asked if I could use it for taxi fares to go to a knitting group or to a friend's house, situations where I don't need a PA sitting right there with me for two hours, but I need someone to make sure I get safely there and back. Apparently I can, as long as I get a receipt, and keep a log of the purpose of the journey (which must be 'social').

The best and worst of this system is that there's no list of approved uses. There couldn't be, because there's so many different things a person could do. I have to think of something I'd like to do, and then find out how much it costs, and then they'll tell me whether I can use my Direct Payments account for all, none, or some of those costs.

It's also a bit experimental. My Independent Living advisor tells me I'm the only person on her caseload so far with this setup. So no clues from that direction.

Ideas, anybody? So far all I've got is an Action Point of going to the library on Wednesday to see what clubs and groups and things are running in the area.

Stunt Bride and Groom, complete

2011-01-31T08:10:00.003Z

Further to my previous post, I am pleased to present the completed Stunt Bride And Groom!

I'm quite pleased with how they came out, really. I think we hit the right level of detail. For instance the Stunt Bride definitely looks like a bride, but her dress gives away only the already-known facts about my dress, namely that it is white and that it is a wedding dress without a train. I am also happy to reveal that my full-size dress is not made out of felt. We considered making the dolls hair and glasses but decided that it was better to keep it at a completely non-detailed "concept" level.

I was wrong about the jacket being the most complicated item. I'd overlooked the facts that:

The jacket is open at the front, whereas every other item of clothing would ordinarily be done up with zips or buttons. Except I don't have zips and buttons that small, so the clothes that needed to be done up had to be sewn onto the dolls. This involved a lot of mattress stitch and, for Stunt Bride in particular, an undignified experience with a teaspoon up her skirt.

The dolls have metal poles up their bottoms which rather interferes with the proper fit of trousers. I think it took me nearly as long to properly stitch what Steve refers to as the "arse-fly" as it did to do all of the leg seams. However at least Stunt Groom won't get debagged at his wedding reception.

The dolls both balance nicely, Stunt Bride can certainly stand up for much longer than the real bride ever can, and the arms and legs and heads are still poseable, so hopefully they will keep the photography posse amused and we'll get some good pictures.

Meanwhile the happy couple are posing together in our living room, and it's making me feel really happy to look at them.

Edit 19:50 31/01/11 to fix link.

Stunt Bride and Groom

2011-01-27T12:08:00.003Z

I’ve been stressing out a little bit about the wedding photos. With Steve and many of his friends being keen amateur (and in some cases, semi-professional) photographers, there are going to be hundreds, if not thousands, of photos taken at the wedding.

I don’t photograph well at the best of times - I always have my eyes half-shut, I’ve got terrible skin, my posture is awful, and I’m that kind of overweight that is noticeably flabby but still too skinny (and with too small a cleavage) to be able to wear the stuff at plus-size clothing stores that makes larger people look good. Steve also has a tendency to, in his words, "look dead" in photographs. We have many strengths as a couple but conventional attractiveness is perhaps not one of them.

Over the last year I have seen many, many wedding photographs. Some have been beautiful. Others have been hideous. The ones that scare me aren't the Big Fat Gypsy Wedding ones full of orange faces and enormous pink dresses, because the people in those photos have achieved the 'look' they were aiming for and the fact that I don't find it attractive is irrelevant. No, the ones that scare me are the ones where someone has tried to achieve a look and they haven't quite managed it. Cakes that cost a fortune but look tiny and forlorn. Venue decorations that make you think the venue probably looked better without. And above all, brides and grooms looking tired and miserable.

Looking through yet another set of ugly, depressing wedding photos, I turned to Steve and asked if I could have a Stunt Bride for the piccies.

He said yes. We formulated a PLN.

For Christmas, we asked my parents for a couple of those little wooden poseable artist’s models, which we now have. One is six inches tall and the other is five and a half inches tall. These are our Stunt Bride and Groom. Stage 1 of the PLN was complete.

The next phase of the PLN is to dress them in very rough approximations of our outfits (partly because future-mother-in-law will kill us both if I reveal too many details of The Dress). I'd been planning to get cheap "Barbie and Ken wedding" dolls clothes but then I discovered that dolls are generally bigger than six inches and that dolls clothes are Not Cheap. However I used to make clothes for my dolls all the time as a kid, so I decided it would be worth a try. Discussion with knitting friends brought me to the conclusion that the best way forward would be to buy some squares of felt (soft, durable material without a distinctive grain or bias, unlikely to fray, reasonably cheap to buy in small quantities) and take it from there.

I am happy to report that I have just finished making the Stunt Groom's jacket.

This was the most complicated item and the successful completion has put me in a very positive frame of mind for the rest of the project.

We will therefore have pictures of “the bride and groom” at all areas of our wedding, with all the unique features of our wedding, having a lovely time, without a spot, scar or cellulite wobble in sight… just in case the real pictures are too awful to look at.

I shouldn’t feel this much better for such a silly solution, but I do.

Ugh!

2011-01-18T10:34:00.002Z

Over the last few months I've been hanging around on a couple of bridal/weddingy forums.

For very good reasons, it's not the Done Thing to out and out criticise other people's wedding choices.

It's acceptable to offer constructive input when asked, and to show respectful interest in the different customs and traditions being observed. That's a good thing. When someone is trying to decide between bows and floral swags to decorate the ends of the pews in their church, it's a good time to offer any experience of those products, but it's not the time to spark a fundamentalist religious debate about whether they should be getting married in a church at all. Tolerance is important in a community and it's great that different people, in different countries, having very different weddings, can all support each other.

This, however, is not a community. This Is My Blog, just like it says at the top of the page, which means it's not inappropriate for me to voice my opinions, and this has been bubbling up inside me for months now. In the interests of civility, I must stress that I recognise that different people have different tastes and if you want any of this stuff at your wedding, you go ahead, it's your wedding. If you are planning a wedding, or you just had one, you may prefer not to read any further. This is your fair warning: you may be offended.

But at last, I must say that I find the following things hideously tacky.

White hoodies with diamante transfers saying “Bride” or “Maid of Honor”. (American spelling intentional.) Yes, while getting ready for your wedding it's a good idea to wear something warm and comfortable that can absorb any spills. It's good to wear something that is fully front-fastening so it can be removed without disturbing your hair and makeup. But white with diamante? My dear, you will get enough attention today once you're in the dress. Be content.

Flip-flops with soles that print “Just” and “Married” as you walk along wet sand. My PA spotted these in a craft store and proposed them as the winner of that store's Wedding Tat collection. And believe me, they had some tat.

Hen parties with “naughty” games and gifts. Well done, it's a (whatever) shaped like a penis. It's not comical, it's not erotic, and the faint air of desperation is unsettling. Lingerie and sex toys can be great, but I can't imagine there's anyone who's actually turned on by pink plastic fluffy handcuffs, or anything with a picture of a cat and “Sex Kitten!” emblazoned across the front.

Music on the wedding website. Internet access has reached a point where even your parents have it, so a wedding website is no longer necessarily a celebration of self-obsession viewable only by other geeks who aren't invited to the wedding anyway. But automatically playing music is a step in the wrong direction, as are hearts falling across the screen, or anything that won't properly load onto the smartphone of a guest who's got lost on the way to the venue.

Vistaprint overdose. On the one hand, Vistaprint do a very good line in affordable, fuss-free printing that can be invaluable for things like invitations and RSVP cards. On the other hand, just because they can put your picture on more or less anything, doesn't necessarily mean it's a good idea. The overdosing idea also applies to people who went to a venue dresser for a few flowers/balloons/table decorations, and ended up ordering a twenty-foot-tall inflatable Bride and Groom in the belief that these would somehow look appropriate outside their elegant, classy venue.

Pretending to be something you're not. This covers people getting married in churches who don't believe in God, people getting married in libraries who don't read, people who order glass carriages and aren't princesses (Kate Middleton got that bit spot-on), and people who order fancy formal meals that they're not sure how to eat. You make some pretty hefty promises on your wedding day - make them as yourselves.

Ohhhhhh, that feels better.

One Month Before Heartbreak

2011-01-15T17:06:00.005Z

This post is rambling, but that can't be helped. There's just too much to cover.

One Month Before Heartbreak is a blogswarm to try and raise awareness about the consultation on DLA reform, which ends on 14th February. I'd like to encourage anybody, disabled or otherwise, who is bothered by these reforms, to join in.

This post from the Broken of Britain explains a bit more about it, or if you're feeling brave you can download the official DWP consultation document from the DWP website.

The short version is: DLA is a benefit paid to long-term disabled people with significant care and/or mobility needs. It is paid regardless of whether or not a person is working, in recognition of the fact that the expenses of disability are non-negotiable - to give just one example, a working disabled person who finds their budget is tight is probably unable to save money by choosing to get rid of their car and walk places.

The coalition government intends to rebrand DLA as PIP (Personal Independence Payment). As part of this rebranding exercise, the qualifying criteria will be shifted with a stated aim of reducing the caseload by 20%.

As we've looked at before, benefit fraud is only around the 1% mark, and for DLA it's even lower, at just 0.5%.

This means that there's about 19% of the caseload (that's 570,000 people) who are genuinely disabled - not just that, but disabled enough to pass the already stringent tests - and legitimately claiming help with the unavoidable costs associated with disability, who are suddenly going to find themselves up a rather nasty creek.

We don't know who's going to be "safe". The document talks about continual reassessment (at great expense to the taxpayer and great profit to ATOS) even for people with lifelong and incurable conditions.

It talks about withdrawing support from people who use wheelchairs independently on the basis that since the DDA, the whole country must now be fully accessible to wheelchair users and thus there is no additional expense and support is no longer needed. The fact that many of those wheelchairs were purchased using DLA is not properly addressed.

It talks about introducing not just more restricted residency rules, but also rules about "presence" (ie attending regular meetings at the Jobcentre, a far from easy task for a disabled person) to bring it in line with other income replacement benefits and encourage people into work. Except DLA is not a sodding income replacement benefit and has bog-all to do with whether or not a person is working! And what if you are working? Will you be expected to take time off to attend your DLA interviews? Will your employer be expected to just suck it up that you are unavailable?

How am I affected personally? If it hits me, I will no longer have any personal income beyond my part-time self-employed earnings, and as I've already admitted, my business income after business expenses does not cover even the most minimal costs of living. Without DLA, not only will I be dependent on Steve to meet our combined bills like rent, council tax and electricity - I will have to go to him with my hand out for most of my clothes, and when I need a taxi to a medical appointment, or to buy a new prescription prepayment card, or replace my mobility aids.

That's not the point, though. At least there is someone in my life who will, in a crisis, fund the essentials of life. Many people are not so fortunate. They don't have anyone to help them out, or worse, the person who helps them may easily become resentful of the extra costs and start withdrawing support.

Finally...

The single thing I have done in my life which has saved the Great British Taxpayer the most money was getting together with Steve. All of a sudden, they no longer had to pay my housing or council tax, and the care I was deemed to need was greatly lessened by the fact I was living with a non-disabled adult. Then, thanks to the support and stability Steve gave me, I was at last able to get a part time job, which meant I was no longer claiming Incapacity Benefit or Income Support, either, which meant I was no longer entitled to free prescriptions or dental care, nor could I claim back costs of transport to medical or DWP appointments, and of course I was now paying in tax and NI. I still cost the system money, true, in the form of my DLA, the Access to Work scheme, and my little bit of social care. But this is much, much less than it cost to keep me alive as a single person.

I would not have been able to develop this relationship and thus become a working member of society without the independence DLA gives me.

It's not something that's going to persuade the coalition, but the fact remains - a non-disabled person might willingly move in with a disabled partner who is independent and only increases the food bill, but they're not so likely to take on someone with higher than normal expenses and no income at all.

I apologise again for the disjointed nature of this post, the probably appalling grammar, and the fact it's a bit late. As usual for winter, I don't have an excess of spoons right now and I'm using up most of the energy I do have on frivolities like eating, washing, work, and my duties as an employer of PAs (more on that another time).

2010 - A Roundup

2011-01-01T16:03:00.003Z

January
My PA having left on maternity leave in mid December, in January I began working with a new, temporary, cover PA. I had another ATOS medical examination for my DLA renewal which went about as smoothly as these things can. I gave up on the business support organisations that had been messing me about and got in contact with The Prince's Trust, who were much more positive and useful about things, and helped me to write a business plan.

February
On February 5th I took the plunge and declared my little business “open”. Obviously there was a lot still to be accomplished in terms of developing and marketing, but it meant I was able to start invoicing and earning little bits of money from clients I already knew. As if in reward for taking the plunge, I found out that following my medical I had been awarded DLA “indefinitely” which meant it would likely be several years before I had to go through the process again.

Then, just when I thought life couldn't get any better, Evilstevie whisked me away for a surprise Valentine's weekend, and pulled off the most beautiful, geeky, romantic proposal I ever could have wished for with twitter, automated computer activities, stunning scenery, photographs throughout, and a gorgeous diamond ring. I said yes.

March
Since this was not a proposal for the sake of being romantic, but a real engaged-to-be-married one, wedding planning started with looking at potential venues and crunching through lots of brochures. At the same time, with the business “open” and a business plan completed, I was able to properly apply for, and was assessed and approved to receive, practical and financial help from the Prince's Trust, as well as Access to Work support in the form of an appropriate powered wheelchair.

April
This April I got very much into an online event called Such Tweet Sorrow - Romeo and Juliet, set in the modern age, with the core characters “acting” in real time by posting tweets, blog entries, YouTube videos and other interactive media. Usually you go to a theatre and suspend disbelief for two hours, but this was five weeks of having six additional people popping up in my twitter feed at all hours of the day and night, and audience participation was encouraged and responded to in character. This meant that the fictional, scripted characters were just as “real” to me as many of the people I interact with online in my wider social circle.

Meanwhile the business was still at a stage of mostly waiting on other people, and the wedding planning was at a level of research research research.

May
As usual, May opened with Blogging Against Disablism Day. Becoming increasingly immersed in wedding planning, my post was entitled It's Not Bridezilla To Want Access and highlighted the ignorance shown to disabled brides by the wedding industry. On a happier wedding note, we picked a date and a venue.

I also went to vote - not that it's done any good - and the Such Tweet Sorrow event reached its conclusion.

June
In June the Awesome Wheelchair was delivered and the world opened up for me. Steve was taking a holiday from work and we were able to go on many days out to properly enjoy the summer sunshine, and even took a short trip back to Lowestoft to say hello to everyone there.

June also saw the beginning of an amazing government-backed propaganda campaign against disabled people which laid the groundwork for the increasingly severe cuts to essential services that have been being announced ever since.

July
In July we officially gave our notice to get married, which is an interview where they check all your documentation to make sure that you are who you say you are, and you're eligible to get married in the UK. We also booked our bouncy castle, started buying pirate accessories, and made our Save The Dates.

August
Another wedding-focused month. I learned how to make balloon swords, because we don't want any injuries from people bringing their own wooden/plastic/metal ones. I also went dress-shopping with Steve's mother, which was an accessibility nightmare but happily resulted in the purchase of a lovely dress at a reasonable price.

September
In September I decided to start working on layouts and discovered Google's SketchUp software. I got a bit carried away, which means that yes, on the one hand, we have a to-scale representation of the reception building, with the correct number of to-scale chairs and tables and other items of furniture, all based on real measurements, which can be moved around to try out lots of different ideas. On the other hand, it means I sunk several hours into it and now have what might be called an excessively accurate 3D colour model of all indoor and outdoor areas when really, a bit of graph paper and some post-it notes would have probably sufficed.

Away from the wedding front, I went to the Food Festival with my PA, and had a wonderful time browsing around and enjoying the atmosphere. And Carie knitted a baby!

October
In October the attacks on support and welfare for disabled people became even more definite in the Comprehensive Spending Review. One of the most shocking cuts being made is the withdrawal of DLA Mobility from people living in care homes. We also saw the severe restriction of the Independent Living Fund (with a view to its closure in the next few years), the restriction of contributions-based benefits to a period of one year, shuffles to Housing Benefit which will see many vulnerable people being split off from their informal support networks of friends and neighbours, and drastic cuts to local authority budgets which are having a direct impact on Social Services.

Due to my privileged position as the de facto housewife of a man who earns enough money to keep a roof over our heads, petrol in the car, and food in the cupboards, I am not as severely affected as some. However it is no exaggeration to say that my independence will be affected, and that if I was still on my own, it wouldn't be a question of independence or of quality of life - I would be struggling to survive, and many other people aren't as lucky as me.

November
In November Steve took a permanent job, as opposed to the contracting work he has been doing so far. It has been taking some adjustment to get used to, but it is in many ways a relief to have a regular and predictable income and it has enabled us to push forward with a few more aspects of the wedding planning. My maid of awesome, Jiva, came to see us for a visit and we arranged the cake, tried on the dress again, and made a bit more headway with the planning.

Every 2011 bride I know held their breath as Prince William and Kate Middleton announced their engagement. Eventually they named their day and along with many others I breathed a huge sigh of relief that it wasn't going to clash (and my phone buzzed with “thank goodness! not your date!” messages). We must feel sorry, though, for the people who had already planned to get married on 29th April, who are now wrangling with Bank Holiday issues, London transport/major event issues, and the risk of being rather dramatically upstaged.

December
Early December saw the arrival of Pip's new Littlun (actually a Littlunette) who I am looking forward to meeting at the wedding if not before. As usual, December was largely focused on steering Steve and myself through Christmas. We got off to a flying start - the cards were written and 90% of the presents wrapped before the halfway point - but then illness and weather started to interfere, with the result that our final Christmas card was only delivered on New Year's Eve and we still have a present lurking under the tree. I've also had PA problems - the young lady who went on her maternity leave last year didn't come back, but she also didn't resign or let me know what she was doing, so I'm grinding through the disciplinary process which is a whole drawn-out procedural mess of formal letters and hearings and paperwork that I could have done without. I also found myself writing a guest post for Where's the Benefit when David Cameron made his priorities clear in a sickening if predictable way.

Nevertheless it was a very enjoyable Christmas. We saw in the New Year with friends (although, unusually for us, without fireworks), and we're confident and ready for 2011.

Keeping Warm

2010-11-30T11:59:00.003Z

I just got my blog stats and found that a lot of people have been turning up here looking for information about help with heating bills.

So, I thought I'd do a recap with information and useful links double-checked for 2010.

There are two types of help with winter heating. One is the Winter Fuel Allowance, the other is the Cold Weather Payment.

The Winter Fuel Allowance is a one-off tax free payment of between £250 and £400 per household. It is paid to everybody over the age of 60 who is normally resident in the UK. It is not means-tested and payment is automatic (Peter Stringfellow got some cheap headlines by offering to give his back). Recipients don't even have to be living in the UK during the winter - it will still be paid automatically even if the recipient is a millionaire who decides to go on an extended holiday in warmer climes for the next few months.

Winter Fuel Allowance is NOT paid to anybody under the age of 60 in any circumstances.

The Cold Weather Payment is a bit more complicated. It is a payment of £25 paid out to eligible people if there is a "period of very cold weather", which is defined as when the local temperature is recorded as below 0 degrees Celsius for seven consecutive days.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment will be made. People do not need extra heating in this circumstance as this is not considered by the government to be a period of very cold weather.

You can find out whether the government thinks your local weather has been Very Cold by using this handy DirectGov tool. Just type in your postcode and then click on the orange "Submit" button that is down and to the right.

My postcode is deemed to have had one period of Very Cold Weather during November. However I'm not eligible for any payment. You see, eligibility is rather more complicated as well.

The over-60s on pension credit get it, on top of their Winter Fuel Allowance. From there on in, it's breadline only. People on Income Support or Income-based Jobseeker's Allowance may be eligible if they also have a disability or pension premium, a disabled child, or a child under five years old. It is also available to most disabled people on Income-based Employment Support Allowance.

It is NOT paid to people on contributions-based benefits, nor is it paid to people on benefits like Disability Living Allowance or Working Tax Credits of any kind, unless they are also on those named income-based benefits and they meet the additional conditions described above.

Both types of payment are automatic - if you are eligible for it, it will be paid. The unfortunate news is that unless you're over 60, you're probably not eligible for anything.

Doctors

2010-11-29T16:01:00.002Z

I had to go and see my GP today. Nothing's wrong - it's just that every so often there will be a note on my repeat prescription asking me to make an appointment for a "medication review" and then I have to attend.

Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:

Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.

The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.

A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.

The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.

And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.

So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.

Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"

To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.

So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.

Cllr Simon Button

2010-11-22T13:17:00.002Z

I've been meaning to post this for a while but I kept looking at it hoping I'd imagined it. This is a scan of the front-page article of a local town council newsletter. It's the "winter 2010" issue and was delivered in mid-November.

The article complains that nobody has come forward to help Cllr Button to organise a local Fun Day. In many ways it's like every other self-important council newsletter you ever read. The bit that stands out, though, is the second paragraph on the second column, reproduced here verbatim:

"It is very sad these days that the old Winston Churchill philosophy still stands - "So much is owed by so many to so few". It seems that everybody wants these events, but nobody is prepared to help out. How sad!"

Yes, Councillor Simon Button draws a parallel between the organising of a tiny local "Fun Day" which entertains a few people for an afternoon and raises a small amount of cash for local charities... and the ultimate sacrifice made by thousands of soldiers in WWII as they fought, with their lives, to save not just the UK but the whole of Europe from the Nazi regime.

I'm not big on the politics of war but even I'd consider that kind of comparison both inappropriate and grossly offensive, especially when written for publication by a town council and even more especially when aired in November, at a time when the nation honours those who died.

The Wedding Of The Year

2010-11-18T12:46:00.002Z

Please don't hate me for bringing up the Prince William/Kate Middleton/engagement thing. Yes, I know, it's already hideously overexposed. Yes, I know, you're sick of hearing about it. I'm sorry.

If it helps, this post isn't about them as such. If I wasn't in the middle of wedding planning myself, then the entirety of my response to the news of their engagement would consist of "oh, that's nice for them," and wouldn't warrant a tweet let alone a blog post.

However I have been nurturing a Bridal Brain since February, so my initial response was "oh, that's nice for them... hang on! Spring or Summer 2011?!? AIEEAAAAGH!!!" Ever since the drive home from Wales back in February, Steve and I have been planning for Spring/Summer 2011 (we've settled on a date in May) and now I am having irrational fears of our wedding being upstaged, sidelined, downplayed, faded out and all sorts of other directional diminishment.

A couple of times I very nearly tweeted "if they steal our date, I'll bloody well kill them," but recent events mean that even though I would only mean this in the figurative sense, and even though it should be apparent that someone with my physical attributes poses very little threat to a healthy Forces-trained male even without a constant bodyguard presence, it would still be a bloody stupid thing to say. So instead I went with "If they pick our wedding date, I'll... I'll... I'll be quite annoyed #IAmNotBraveEnoughToBeSpartacus" and felt like an enormous coward.

I mean, it's bad enough to end up sharing your wedding day with a major sporting event (Wimbledon, World Cup, Test Match Cricket, whatever) that your guests are going to be sneakily trying to keep track of. To clash with the hype of a major royal wedding... it doesn't bear thinking about!

The biggest problem is that, for obvious reasons, I have to spend a lot of time resting, and if I can't sleep, I tend to daydream, and my daydreams aren't always kind to me. This opened my brain to the horrific possibility that if they get married in, say, March, and they have, for the sake of argument, a pirate theme to entertain the kids who are attending, then when people come to our wedding in May and see all the pirate party bags and whatnot, then even though we bought that stuff in summer 2010, it'll look like we're trying to emulate them. Same goes for music, readings, colour schemes, dress style... it's unlikely they're going to have anything like what we've chosen, as they'll be restrained by a lot of protocol, but what if? What if our carefully planned and very personal wedding just looks like a poor imitation of the most highly publicised marriage so far this century?

I know this is irrational! I know that even if they want pirates, they won't be allowed pirates! I know none of our guests will be making comparisons! But Bridal Brain is not conducive to sane, rational thought!

.

..

...

I'll understand if anyone wants to just come back in June.

Back to work

2010-11-13T20:36:00.003Z

No, not me, but Steve. We had a lovely summer together, but we also have a wedding to pay for, so after his much-needed break poor Evilstevie has trudged back to the coalface of the IT industry to earn us some beans.

It's a bit of a shock to the system, but it's also kind of nice to be settling back into the work-day routines again. I have resumed my wifely task of making him a nice packed lunch every day. "Making" is stretching the point a little as it consists of making some kind of sandwich, putting it in a box, and then adding little pre-packed snacks of varying unhealthiness (from fruit cereal bars to bacon frazzles) until the box is full. But it's something I enjoy doing, and it's something he enjoys eating, and it also gets me points with my future-mother-in-law because while Jamie Oliver would probably scream with disgust, at least it means Steve eats something during the day.

Once Steve and his snacks have gone to work, I've got the house to myself for the day, which is taking some getting used to. Obviously I've been working all along so it's not like we've been spending every waking moment together, but I'd got quite used to the way that every couple of hours one of us would decide to make a cuppa and say hello while we were at it. I'm certainly drinking less tea without him here.

The other thing I'm trying to do (although so far I've only managed it two days out of five) is to try and play on the Wii a bit each day, in the name of moving about properly and maybe even trying to get a bit of weight off pre-wedding. My favourite game for this is Just Dance, which differs from most dance games in that instead of demanding intricate footwork on a floor pad, which would see me flat on my face within about fifteen seconds, it's big movements with your arms and body - you can play it standing still, or sitting down, or on one leg or jumping about the place if that's your thing. There's also a nice warm-up session on it, which I can't manage all of, but I do my best and at least it means I've stretched a bit. Pre-disability I really enjoyed dancing, so this is good fun and the music makes it easier than doing physio in silence.

If anyone else can recommend any good Wii games that move more than just one arm, don't require good balance, and have varying levels of physical impact, please leave a comment. I wouldn't have even known about Just Dance until I happened to hear another crip mention it. I'm a little bit limited on space - 160cm between the TV and the sofa, which isn't enough for me to lie down full length - but beyond that I'm open to suggestions.

Proud of the BBC

2010-11-06T09:55:00.005Z

I know I've mostly been talking about the welfare aspect of the planned cuts going on. That's because I believe that it's important for people to have the absolute basics of life - a safe place to sleep, food to eat, warm clothes to wear, necessary medical attention, the ability to develop and maintain social contact with other human beings - over and above everything else. Arts and culture is important, certainly, but I don't believe anyone could stand in front of a disabled person and say "I'm sorry you're having to choose between having your heating on and buying food this winter, but we're sure you'll feel better for knowing that the money we're saving on your benefits means that the massive art gallery down the road can stay open. And keep their heating on. You could go there every day to keep warm! Well, you could if we hadn't cut the accessible transport service..."

And the BBC has its failings. Extreme health and safety. Multiple layers of bureaucracy. Their persistent habit of sending threatening letters to houses with no television sets demanding that the licence fee be paid.

Nevertheless, I'm proud of the BBC and agree with every sentiment in this wonderful song:

I do watch TV, and I pay the licence fee, and I'm okay with that. I don't always watch BBC channels but many of the programs I like were originally developed for/by the Beeb and have been bought for repeat by other channels. I also listen to the radio/podcasts, I participate on a couple of messageboards, and I adore the BBC news website. During the Chilean miners' rescue, for instance, the BBC was a definitive source of information. It was clearly laid out, well-presented, low on sensationalism, high on commitment. The feed and the articles were being echoed around international forums as being superior to the coverage offered by other news outlets. The BBC has a lot to be proud of and in turn we can be proud of the BBC!

Mitch Benn's Proud of the BBC is available via many download sites listed here.

Alas, poor Roomba

2010-10-28T10:37:00.003+01:00

In November 2007, Steve and I purchased a Roomba robot vacuum cleaner. In our household, it is probably the most-used domestic appliance after the kettle and the microwave. Certainly it gets used much more frequently than any of my traditional vacuum cleaners ever have (even pre-disability - I was never a great housekeeper), the happy result being that when I hit the deck I am able to just relax until I'm able to stand up, rather than lying there trying not to breathe too deeply for fear of inhaling several months' accumulation of crumbs and dirt. It's that independence thing again. If I think the carpets are too filthy to lie around on, I can just push the button and clean them rather than having to beg and pester and nag and cajole and use up favours to get someone else to do it.

Our Roomba is now very nearly three years old. And he is starting to feel the strain. He was absolutely fine until about a month ago, then one day he worked for about ten seconds and then stopped and sang his sad little song of woe. Slightly concerned, I dismantled his user-serviceable parts (oo-er) and extracted several handfuls of fluff from mechanism areas where fluff should not be. One charge cycle later, and he was fighting fit again.

A week later the same thing happened. This time Steve dismantled him rather more thoroughly and removed another handful of fluff from hard-to-reach areas. One charge cycle later, and he was cleaning the hallway with a smile. On his little non-existent face. You know what I mean.

Now we're at the stage where every time we want him to clean, he runs for anything up to a minute before stopping. Then he sings the sad little song of woe and flashes his little red light, then we reset the battery and mess about with the charger and then he cleans one room, gets back on his charging base, but still sings the little song of woe the next time we try to use him.

I fear he is on his last legs. Wheels. Whatever. He's not quite ready for that great WEEE recycling plant in the sky, but (shhh) if he was claiming DLA it would probably be under the Special Rules.

Amazingly, a Roomba 560 (same model) seems to be currently £300 in the UK (or would be if it was in stock). That's particularly upsetting as we only paid £250 for this one when we bought it three years ago! I say 'only', I mean relatively...

If anyone happens to have any bright ideas, I'm open to suggestions. My instinct says to replace the battery, but a new battery is about £60 which is rather too much for something that may or may not solve the problem. So it looks like we'll be pleading and coaxing him into occasional functionality until after the wedding and putting "new Roomba" at the top of the registry.

Abandoned claims

2010-10-27T08:05:00.002+01:00

Woke up this morning to see that a certain right-wing rag has surpassed itself in the propaganda it chooses to spout about ESA.

I'm not going to link to it because it will only upset me and every reader.

The headline asserted that 75% of those who claim ESA are found "fit to work".

This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. The article did not split these figures. It did not differentiate between the Support (never likely to be able to work) group and the Work-Related Activity (may, with help, be able to do some jobs) groups of ESA - from reading the article it seems that they are only counting those who meet the Support group test criteria as "genuine". It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".

Legitimate reasons why an ESA claim may be started and then abandoned:

The claimant dies.

The claimant gets better, be it a miracle or a new treatment or being bumped up the waiting list for surgery or getting private treatment.

The claimant, having lost their job, is offered support and a place to stay by their parents or their children. They decide to abandon their claim and re-start it once their move is complete.

The claimant looks at the highly personal questions on the form and says "you know what, I'll never be this desperate for money, prostitution is less demeaning."

The claimant wins an insurance or compensation payout that enables them to survive without benefits.

Due to their condition, the claimant is unable to understand the importance of filling in the form or unable to remember that the form needs doing.

Due to their condition, the claimant is unable to fill out the forms - perhaps they have a brain injury or learning disability and cannot read and/or write, perhaps they have issues with their hands and cannot physically hold a pen, perhaps they have a mental health condition that causes panic attacks every time they approach the form.

Due to their condition, the claimant is unable to access support to fill in the forms - for instance they are unable to go out, they do not yet have formal Social Services support, and their CAB is overstretched with permanently engaged phone lines (I have personal experience of urgently needing to get to the CAB but having to wait until support is available).

The claimant completed the form, but due to their condition, they are unable to travel to and from the medical examination centre alone, and they are unable to secure help and/or funding to allow them to attend. Because their level of impairment does not exist until ATOS say it does, this is not a valid excuse for non-attendance. (I had this issue with my DLA a few years ago).

The claimant is sitting at home with the heating off, desperately waiting to hear back from the DWP about their claim, which the DWP has lost.

If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.

If you want to imagine the future...

2010-10-23T16:30:00.003+01:00

In my last post I spoke about how, thanks to my particularly fortunate circumstances, I should not be too severely affected by the proposed cuts in the Coalition's Comprehensive Spending Review.

I wrote that in the same frame of mind as a parent might hug their warm, safe, living children after hearing about a fatal school bus accident. It's okay. I'm okay. The bad things happened to someone else. It's terrible, but it was someone else.

That emotion dealt with, it's time to acknowledge that I am not so unaffected as I would like to believe. This is difficult for me to post as it involves hard truths not just about my condition but also my business and my relationship, but Bendygirl's video has persuaded me that it needs to be said.

Hard truth #1 is that I am dependent, physically and financially, on my partner. I contribute to the household in the ways that I can, but ultimately, he's providing for me.

I work, yes. I worked for a company for just over two years and now I've been self-employed for about eight months. I have a growing base of satisfied customers, I pay National Insurance, I will be doing a tax return, and each month, the business expenses are met with a bit left over. Go me!

Unfortunately, much as I hate to admit it, hard truth #2 is that the bit left over isn't a very big bit, and nor were my earnings while I was PAYE. It's always been well under £8,000 per year. I simply can't work very many hours and I'm not in a position to raise my rates.

So the long and short of it is that if my relationship fails, meaning that I am no longer housed and supported by someone else, I will have to wind up the business and seek help from the state until such time as I am able to find employment that pays enough for me to live on without demanding more than I am physically able to give.

A lovely big squishy truth now - my relationship is fine. That's why we're planning a wedding. Excuse me while I cuddle that truth for a little while.

I do feel, though, that part of what makes the relationship fine is that we both know we could leave at any time. I'm not with him just because he can pay the bills. We started our relationship in the knowledge that we can both survive as single adults - we choose to be together, every single day. It's not nice to think of exit strategies, but at least I knew that if something unthinkable happened - for example, if he were to hit me or to announce that he was leaving - I would be able to get a taxi to a friend's house and then start phoning Social Services for support. I would be able to claim money for food on an emergency basis, I would have a few hundred quid in savings to see me through for the first week or so, I would have help to apply for income replacement benefits, and thanks to my DLA status I would have to be put in appropriate accommodation.

This is no longer the case.

The Coalition are aiming to reduce the number of DLA claimants by 20% (600,000 people). That's all very well, but the rate of fraud on that particular benefit is just 0.5% (about 15,000 people), which means that there are 585,000 people who are legitimately claiming, whose conditions have not changed, and yet who are going to get kicked off a benefit which is frankly a lifeline. Believe me when I say the bar is already set quite high for who can and cannot get DLA - it's not awarded for minor illnesses. Remember the official disability facts and figures? There are 11 million disabled people in the UK and yet only 3 million of them get DLA. Long-time readers will remember all the trouble I had with my DLA appeal a couple of years ago. Spending the best part of a year trying to fight the system while also trying to cope without the money. It's not to be had for the asking.

(It should also be reiterated that this shifting of the goalposts purely a cost-cutting exercise. DLA has nothing to do with whether a person works or not. Many DLA claimants are in work and paying tax. In many cases, it is their award of DLA that allows them to buy the care and equipment that enables them to continue working.)

If I were to lose my DLA, it's not just the money that would disappear. All sorts of things go with it - daft stuff you wouldn't necessarily think of, like help getting your water if there's an emergency and your street is put on a standpipe, or eligibility for things like Disabled Person's Railcards.

Let's be positive, though, and assume I keep it. Next, I'd need income replacement benefit. This would be ESA, the benefit that is being phased in to replace the old Incapacity Benefit. ESA divides into two groups. One is for people who are never likely to be able to work - mostly people with terminal illnesses with only a few months left to live. This group get full and unconditional benefit for as long as they are ill (in other words, until they die or a miracle occurs). It's a small group - currently about 6% of claimants. The other group is for those who, with support, would be capable of some work, and their receipt of the benefit is dependent on them fulfilling "work-related activities" such as voluntary placements or work experience placements...

Actually that's not quite true. There's a third group for ESA. The third group is those very definitely disabled people whose conditions don't quite fit the boxes. Those with fluctuating conditions. Those who would be considered capable of "mobilising" fifty metres if they had an appropriate wheelchair, even if they do not in fact have such a wheelchair, nor any way of obtaining one. These people are put onto normal Jobseekers' Allowance with all the hoops and hurdles thereof, and drop out of all disability monitoring at the DWP. No specialist support. No reasonable adjustments. Just sanctions if you do not sign on or if you do not apply for enough jobs.

Assume, then, that I would get either work-related activity ESA, or that I would be discarded onto JSA. Finally, I have to find somewhere to live, and this is where it gets really tricky.

First of all, as a person under 35 I would only be eligible for a room in a shared house. Sharing a house is a tricky prospect for a disabled person. You need the people you live with to be able to understand about your disability. You need them to understand, even when drunk, that your mobility aids and assistive items aren't their toys and that you really do need a proper sleep schedule. You need to be able to get help to fulfil your share of the chores, and Social Services do not provide help with housework for people who live with "able-bodied adults". I wouldn't last five minutes.

Of course, you also might need certain adaptations to the property. That's expensive and I doubt councils will fund much of it. So maybe that would mean not having to enter a house-share because it's not physically appropriate. Which means we're looking at temporary accommodation in (a) a hospital or (b) a hotel with an accessible room. It could happen, but it'd be expensive. Perhaps a better solution would be care homes? I don't require nursing care, but it would be a room, and it would be accessible, and the other people would understand my situation.

Heh. Well, yes. That's a solution. It's already a solution for many people. Live in a care home. They remove all your income replacement benefit, and they remove all of your DLA care component, and then they give you £20 a week of "pocket money" to cover anything that's not basic food and bills. Shampoo, conditioner, deodorant, makeup? Pocket money. Clothes and shoes? Pocket money. A laptop computer to enable you to communicate with the world? Pocket money. These things could be considered luxuries, but would YOU employ someone without them?

DLA mobility component is different. People can use that however they see fit. Some people hand it all over and get a leased Motability adapted vehicle. Some people use it to hire or purchase a mobility scooter. Some people use it to cover the difference between what the NHS will pay for a wheelchair, and the price of a wheelchair they can actually use. Some people pool it with others in their care homes to fund an accessible minibus. Some people keep it and use it for taxi fares so that they can do things like, ooh, go into town and sign on or do Work Related Activity as part of their ESA/JSA requirements.

The Coalition intend to axe DLA mobility component for people in care homes. Adapted cars, taxi fares, and in many cases, wheelchairs, GONE. When challenged, the government said that local authorities should be providing transport and daytime activities for disabled people in care homes. These would be the same local authorities who have been told to reduce their spending by 25%...

So if the Coalition's plans are successful, then for the next seven years at least (until I am 35), my choices are to stay with Steve, or to attempt to bounce on a welfare safety net that will be so small as to be negligible. Can I still honestly say that we live together out of choice, when my best case breakup scenario will be either virtual imprisonment in a care home, or living out of a suitcase in a cheap hotel? Ironically, the additional pressure this puts on my relationship only increases the chance of it turning sour. And since neither of those situations are going to enable me to pick up the threads of my life and move towards getting back into employment, it makes me even more likely to remain benefit-dependent for longer.

I say again, for myself as much as for the people reading this, that my relationship with Steve is stable and loving and going nowhere. In that respect I am more lucky than many disabled people who find themselves increasingly dependent on their partners. But one thing you learn with adulthood-acquired disability is that life can change in an instant - I'm scared that the safety net which caught me once, and which I may rely on to catch me again, is being removed.

Cuts

2010-10-21T15:20:00.004+01:00

I want to post about the cuts made in the Comprehensive Spending Review yesterday.

I'm not doing so well at the moment, so for the sake of spoons this is going to be short and based on my own experiences rather than linking to statistics and documentation. That in itself is part of what makes the cuts to disabled people so underhanded - we're not all able to fight back in a planned, structured and comprehensive manner.

Personally, at this point in my life, I probably won't be too badly affected for a couple of years. Oh, there are things that I should have that are now disappeared into the long grass, but my extremely fortunate circumstances mean I am not being thrust into heat-or-eat poverty. I know just how lucky I am and I know many others will not be so lucky.

What happened to me was not unusual. One week, I was a reasonably healthy, reasonably fit, reasonably bright young woman with a reasonably well-paid job, reasonable promotion prospects, living in a small but reasonably pleasant bedsit flat and, all in all, living a reasonable life. The following week, I was being sent home from work with what was assumed to be 'flu. Three months and half a dozen failed attempts to return to work later, I was being prepared to accept that my illness might be rather more long-term, and three months after that, my work contract was ended and I was obliged to claim welfare benefits to survive.

I did survive. It wasn't without difficulty, what savings I had were eroded, and I don't know how long I would have kept it up - let's not pretend we lived like princes under New Labour - but I had practical support, an intact National Insurance record, and the wherewithal to challenge the DWP when they cocked up their own rules, and so here I am. I landed on the welfare safety net, but I bounced, and a few years later with a lot of help from loved ones I was able to start earning again.

However I feel very sorry for anyone who goes through that same not-unusual scenario with ESA (thanks to Labour for that) and the cuts proposed by the Conservative/Liberal alliance yesterday. I would not have survived.

The harshest cut? Removing DLA mobility allowance from disabled people who live in residential homes. This is the money that goes towards the difference between what the NHS will pay for a wheelchair and what a suitable wheelchair actually costs. This is the money that pays for taxis to visit friends and family. This is the money that residents pool together to get an accessible minibus for their home so that they can have trips out. I do not understand the rationale for removing it.

SketchUp

2010-09-15T09:26:00.003+01:00

I've been playing with another Google toy that I never knew existed. This time, it's SketchUp - a 3d modelling/design program. I discovered it while trying to make a start on the room layouts for the wedding.

My previous experience with 3d computer design begins and ends with The Sims. This is pretty much like someone saying their experience of English literature begins and ends with having read Peter Andre's autobiography - technically it's a book and it involves skills like the turning of pages and the reading of words, but.

Nevertheless, SketchUp is very easy to use and Google have done their usual thing of short, helpful video tutorials. Within a couple of hours, I had produced this:

That's a proper size layout of the room where the reception will be held, complete with the correctly-measured tables, chairs, sofas, bar unit and so on created from scratch (Google do have a "3D warehouse" of ready-made objects but I was having fun). At the moment I'm still populating the room with the various items it needs to contain. Then we'll be able to shuffle them about until we're happy.

Yes, I know I could do this with paper. In fact I bought a pad of graph paper for this very purpose. But a computerised layout won't scatter everywhere as soon as there is a breeze, and I can delete and move lines without making it messy. Plus, I can view it in 3d and in all sizes.

I know it's not exactly *pretty* at the moment, but there is the potential within the program to add colours and textures and shadows and whatnot. I think if I go too far with that my poor little computer might fall over, though, so we'll get the basic layout sorted and saved and then play about with details.

The Hawking Comparison

2010-09-12T15:10:00.002+01:00

As the government's attacks on welfare claimants increase, stupid and offensive comments about disabled people are being repeated more and more often. The one which is bothering me today goes something along the lines of:

"That Stephen Hawking bloke earns his own living, therefore benefits should only be given to people who are more disabled than he is."

Yes, that Stephen Hawking bloke does earn his own living, and all power to him for that. However:

1. He is a bona-fide 100% genius, and was already recognised as a genius before his illness was affecting him.

2. Quite possibly because of that genius, he has had access to custom-made adaptive and assistive technology FAR above and beyond the norm. Professor Hawking was using technology in the 80s that is not necessarily available to people with the same condition even today.

3. If the genius aspect was removed - if instead of being Professor Stephen Hawking, PhD, CBE, FRS and however much else of the alphabet you feel like adding, we just had Steve Hawking with seven mediocre GCSEs from the local comp and a bronze swimming certificate - how employable would he be? If the man who holds the workings of the universe in his head were to express an interest in coming to give a lecture at your nearest college or university, it's a fair bet that they would scramble to provide wheelchair access to as much of the campus as possible and make every other adjustment asked for in terms of allowing extra time, ensuring appropriate parking space, and whatever else is in his 'rider'. Would they do the same for someone who had applied for the minimum-wage caretaker's position?

Professor Hawking is a remarkable man and as such he is the exception, not the rule. The only possible answer to "Stephen Hawking has a job, why don't you?" goes something along the lines of "Stephen Hawking has written several best-selling books explaining scientific mysteries which have baffled the finest minds for centuries - why haven't you?"

It's one thing to aspire to the achievements of the most amazing people ever to have lived, but quite another to take them as a benchmark for what is expected of us.

Wedding dress!

2010-09-09T16:21:00.004+01:00

Short version for the easily bored: I bought my wedding dress. No, there aren't any pictures.

Long waffly version:
I wasn't expecting to have bought my dress already. Truth be known, I thought it was a process that would take months. But, I felt I should start that process sooner rather than later, so my Future Mother-In-Law (FMIL) and I decided that we would begin dress-hunting once she returned from her summer holiday. While we weren't averse to the idea of second-hand or internet-ordering, we felt it would be a sensible start to try on a few different styles and see what worked on me.

The first issue I had to sort out was the extremely limited access to bridal shops. I phoned all of the ones I could find listed locally. None of the ones in my home town were wheelchair-accessible and only one, maybe two, in the next town over were able to tell me that they had access. Not to be put off, I made August appointments with both of those. One of them cancelled, so eventually we just went to the one remaining shop, which was Eternal Bride in Warwick.

They were lovely. I don't think they were experienced with disability issues and it would have been tricky to get through the store if I was using a more typical bulky type of powered wheelchair, but they were friendly, polite, non-intrusive, and made every effort to accommodate me. I was impressed.

They even managed the Holy Grail of assistance - they asked me what I needed and then they paid attention to my answers.

We tried on loads of different shapes and styles of dresses from the racks and got a really good idea of what works well, and what I should avoid. Then I had a bit of a rest while FMIL and Debbie (the member of staff helping us) went upstairs to look through the sale dresses (three-figure price tags rather than four). They came back with about six dresses, all of which I probably would have chosen myself at that point. And once they'd been tried on, one of them was considerably nicer than the others...

Unfortunately it was a discontinued style so I couldn't simply plan to order it nearer the time, and, due to the fact a huge train skirt won't work with the wheelchair, it would have required some £150 of alterations on top of the not-inconsiderable price of the dress itself. I was tempted, but felt that I should not spend that kind of money without thinking about it, consulting Steve, and going to more than one shop. Debbie very kindly agreed to hold it for us for a few days and FMIL and I started frantically trying to find somewhere else to try dresses.

Since the biggest issue with the dresses in Eternal Bride had been the huge floofy skirts and trains, we decided that our best bet would be to try a department store. We figured this would carry outfits that were more "cream-coloured formalwear" than actual bridal gowns, and perhaps have a more modest price tag. Monsoon, for instance, used to carry a small range of dresses that would be equally suitable on a low-key bride, a grownup taking First Communion, or someone attending a prom. I'd already had a look around local department stores with this in mind, but hadn't found anything, so it was back to the phones. It seems that many department stores now only carry a bridal range at their flagship stores, but I was able to make an appointment at House of Fraser in Birmingham.

Advice: don't bother. It was all £1,000-plus floofy dresses with huge trains, and an added rather baffling feature was that many of the dresses had SHARP beading and sequins under the arms - I didn't even wheel anywhere but after half an hour of trying-on I had loads of angry red marks and scratches on my inside upper arms. Dejected, FMIL and I met up with Steve for lunch in the Bullring, where we spotted Sonique.

Sonique mainly do prom dresses, or to put it another way, they have a huge range of formalwear, in colours including white shades, many of which do not have trains and do not floof out by a metre or more. They're also that bit more affordable. And the staff know their stuff - rather than having us rummage through all of the hundreds of dresses in the store, the lady we spoke to listened to our list of features we liked and disliked and then picked two dresses off the racks and invited us to come and try them on.

Sonique are not champions of accessibility. Like every other store in the Bullring, they have level access built in from the word go, and they have kept their aisles uncluttered. However the changing cubicles are one-person size with no seat and solid swing doors, which meant that since I needed physical help getting into the dresses, I was basically expected to take my top off and then stand propped in the corner of a cubicle with the door open while the assistant got the dress over my head and did it up. I still had my jeans on underneath and I wasn't feeling very impressed...

... then I turned around, saw my reflection in the big mirror, and had the fabled "this is my dress" moment. While I stood there gobsmacked, stick in one hand and doorframe in the other, the assistant looped a matching wrap around my arms and it was perfect.

Trying not to get overexcited, but no longer so bothered about the lack of privacy, I got rid of my boots and jeans and carefully sat down in my wheelchair. It was still perfect. I could still move my arms. I could still breathe and lean and twist as much as I usually can and it wasn't at risk of tangling in the wheels. I stood up again. It was even the right length, and it didn't interfere with where I need my stick to be.

I tried on the other dress, just to be certain that it wasn't simply a case of me being relieved that I was trying on a dress that was comfortable. Nope. The second dress was nice enough as dresses go, but not WOW nice. I put the first dress back on. Miles better.

After a bit of consideration, FMIL and I decided that we'd tried on a truckload of dresses, this was the best one by far, we weren't likely to top it unless we got into the realm of full-on bespoke dresses and even then it wasn't guaranteed... so I bought it.

I'm not at liberty to disclose any major details about it (if Steve finds out what it looks like, FMIL will kill us both) although if anyone's interested, compared against a Dulux colour chart the nearest matching shade is "chalk burst".

I was a little bit anxious about phoning Eternal Bride to tell them I wasn't buying my dress from them after all, but they continued to impress me with her polite, friendly, professional approach and I really can't praise them enough. Even though it was Sonique who happened to stock the actual dress I chose, it was Eternal Bride, and particularly Debbie, who made wedding dress shopping a fun and accessible experience for me, and I'd recommend them to anyone.

Done/arranged/have a PLN:
Registrars
Venue
Food and drink
Photography
Bouncy castle
Balloon swords
Hair (sort of, I have a stylist but not a style) and makeup
Gloves (in progress)
Dress!

Still not even properly thought about:
Ceremony options
Rings
Invitations
All the flowers
Decorative balloons
Shoes, lingerie and jewellery
Nice walking stick
Table decorations
Venue floor plan

Your opinion does not change reality

2010-09-07T07:21:00.002+01:00

Yesterday I was reading an article by Naomi Jacobs that pondered a recent piece of research by Scope. According to the Scope research, 91% of Britons say that they believe disabled people should have the same opportunities as everyone else - yet 90% said that they had never had a disabled person come to their house socially.

Naomi pointed out that there are 11m disabled people in the UK and that this dissonance may be due to a poor understanding of disability issues. Yes, marginalisation of disabled people happens, for all sorts of reasons from prejudice and fear to physical access issues. But many people may well have worked with or socialised with a disabled person unknowingly, without understanding what "disabled" actually IS.

This was proved almost instantly in the comments with claims that there "can't be" that many disabled people, almost entirely on the basis that "it doesn't feel right."

Now, okay, CIF articles attract a lot of comments from people who are misinformed (or just trying to be antagonistic). However, Naomi had actually linked to a short and comprehensive document of Disability Facts and Figures(PDF) from the Papworth Trust, it's just nobody had bothered to click on it.

So. Some little summaries.

11 million disabled people in the UK:
6.9 million of working age
770,000 under 16 (83% of disabled people acquired disability during their working lives)
3.4 million people over retirement age.

1.2 million people in the UK are wheelchair users, which for many people is still the definition of disabled. However only 28% of these (about 336,000) are under 60. People often find it easier to accept that an older person may have impairments and often insist that these people "don't count" as disabled.

So if we take the common perception of disability as only applying to people of working age who are wheelchair users... that's about 0.5% of the UK population, a figure I am sure the naysayers would find much more palatable.

However, the DDA definition of disability is

“A physical or mental impairment which has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities.”

This means that as well as covering physical impairments that are visibly obvious to the layman such as the loss of a limb, it also covers everyone with less obvious but disablingly severe conditions such as learning difficulties, sight loss, hearing impairments, and mental health problems. Furthermore:

Medication or equipment (such as an artificial limb) which helps an impairment, is not taken into account when considering whether an impairment has a substantial effect.

Which means that the DDA also covers all the unnoticeable people walking around with conditions like epilepsy or diabetes or heart conditions, who with their medications are perfectly able to live entirely normal lives, but without their medications, would be hospitalised or dead.

All of a sudden, the 11m figure seems remarkably low. We're not "all a little bit disabled" (having to go to bed with a headache once in a while is not a substantial or long-term effect) but we probably all encounter disability much more than we think we do.

Endnote: Please bear in mind that the DDA definition of disability is very different to the one used for assessing disability benefits - for starters, benefits assessments assume that you have taken all your medication and that you have all the access equipment you could wish for (see the imaginary wheelchairs fiasco). So 11m disabled people does not mean 11m benefits claimants.

The Scope research was by ComRes and apparently used a statistically viable sample of GB adults that was weighted to be demographically representative, and 91% of them said disabled people should have the same opportunities as anyone else. Yet according to other research, this positive attitude is not carried through into reality. For example, a 2009 YouGovStone survey on behalf of IOSH (Institution of Occupational Safety and Health) found that 73% of employers would not even consider hiring an older or disabled person and would therefore actively deny disabled people those opportunities. It was spun it as "27% of employers would consider hiring an older or disabled person," as if it's somehow praiseworthy that a whole quarter of employers are prepared to consider meeting their basic legal obligations. We've got a way to go.

Pointless Invention

2010-08-16T07:12:00.002+01:00

Today I saw what is possibly the most pointless piece of "time-saving" technology ever.

Sainsburys are trialling Prescription Vending Machines. You log in with your fingerprint and/or ID number, put your prescription into the machine, and get your drugs out.

On the face of it, wonderful. I get pretty much the same incredibly common drugs every four weeks and it would save me about twenty minutes a month if I could insert my prescription into a slot with one hand and pick up my tablets with the other.

Then I saw this BBC piece on how it actually works (that link goes to a video piece, I haven't yet found a written article). I'll do a step-by-step description, with what happens when I use the human pharmacy in italic text and the way the machine works in bold.

I go to the pharmacy counter, write the date and sign the prescription form, and hand it to a pharmacy worker (not the pharmacist) who tells me how long it is likely to take. If it's five minutes, I hang around and wait, if it's half an hour they give me a collection ticket and I'll find something else to do and come back later.
I go to the pharmacy vending machine, write the date and sign the prescription form. I mess about for a little while logging into the system (assuming I'm at a height where I can see the screen, and have a level of vision which allows me to see and use a touch-screen interface). Then I put my prescription into a special envelope (assuming there's nothing wrong with my hands)and post it into the little slot. The machine prints off a collection ticket telling me how long I will have to wait.

So far, the machine is taking longer. But what happens next is even better - and it ensures that the wait will never be as short as five minutes. Let's assume my waiting time is 30 minutes and I've wandered off...

The pharmacy assistant places my prescription at the back of a prescriptions box. The pharmacist himself is taking prescriptions from the front and dealing with them one by one. Eventually he gets to mine. He enters my prescriptions into the computer, to make sure none of them clash (this extra layer of checking by a fresh person and a separate computer is why GPs don't tend to give out drugs directly), measures out the drugs, puts them into a paper bag, seals it with a label with my name and NHS number printed on it, and places it onto a shelf which I believe is organised alphabetically for last name.
The pharmacist at the back of the machine - yes, the machine is dependent on a human being at the back of it - retrieves my special envelope, opens it, and takes out my prescription. He enters my prescriptions into the computer (is this sounding familiar yet?), measures out the drugs, puts them into a plastic baggie with my name and NHS number printed on it, and places this into the machine, which may or may not be organised alphabetically, who knows?

Yes, in true mechanical Turk style, there's still an actual qualified pharmacist doing all the actual work. The machine is just a glorified drop-box. So far the processing system is no more automated than it's been for the last ten years or so. They've just added an extra layer of ID-checking that's going to make it difficult for shorter people, people using wheelchairs, people who have trouble with their hands, people who can't see or use touch-screens, and people who are too ill to come out to collect prescriptions and have to send a friend or assistant. I bet the thing talks as well, just to exclude those with impaired hearing/auditory processing too - they might as well try and get the full house.

Anyway, half an hour or more passes and I come back to the pharmacy...

I confirm my name to the pharmacy assistant. They retrieve my bag of drugs from the shelf of prepared prescriptions, ask me to confirm my address and date of birth, and hand it over. They will advise me of any clashes (for instance that antibiotics reduce the effectiveness of the contraceptive pill) and then off I go.
I log in to the system again, assuming as before that I am able to do such a thing. The machine retrieves my bag of drugs from the high-tech shelf inside, and pushes it into the collection chamber with a little note telling me of any clashes. I open the collection chamber, retrieve my tablets, and off I go.

So it takes longer and is no more reliable than the current system, even assuming that there are no mechanical or software issues with the machines - self-checkout, anyone? Nevertheless their claim that it will enable people to skip the queues is probably correct, as the sick or disabled people unable to use the machine will still be queuing at the normal pharmacy. It's not even as if they'll save that much on staffing costs, as the machine still requires a pharmacist to do the bulk of the work and presumably an operator to empty, fill and maintain the thing.

I love technology but I really cannot see the point of this one.

Credit profiling and benefit claimants

2010-08-11T09:33:00.003+01:00

I'm sure everyone has by now seen the articles about David Cameron's latest crackdown on benefits claimants, with plans to pay private companies to rummage through claimants' accounts. I'd refer to his crackdown "on benefits cheats" but that's not really true - benefit fraud, particularly for disability benefit, is at less than 1%, which means that for every one fraudster he cracks down on, 99 genuine claimants, already dealing with poverty, sickness, disability, job loss and whatever other issues have led to them legitimately being on benefits, are being terrified and harassed. He's attacking claimants.

More money is lost through administrative error than through fraud. So it's interesting that Mr Cameron's plan of attack involves rummaging through the personal affairs of claimants rather than training his staff at the DWP and Tax Credits units to make fewer mistakes. Surely staff training is cheaper than investigating millions of claimants?

According to the Citizen's Advice Bureau, there's about £17bn of benefit that is unclaimed because people either don't know they're entitled to it, or can't deal with the application/appeals processes. Perhaps Mr Cameron is aiming to increase the unclaimed benefit with his campaign of "if you claim anything, we're going to have our grubby little paws all over your bank accounts and make your life a misery."

I'm very relieved to not be on means-tested benefits any more (I get DLA but that's for disability-related expenses such as mobility equipment, and not dependent on earnings or work status), as I almost certainly would have had a credit profile with red flags. The most regular things I bought on my credit/debit cards while living alone on IB and HB/CTB were:

- grocery shopping for more than one person and including baby stuff like clothing, food and nappies. (While I lived in Lowestoft, friends who drove would give me a lift to the supermarket. In order to take advantage of multi-buy offers and "spend £100 and get a voucher for cheaper petrol" offers, I'd pay for all our combined shopping in one go on my credit card, and then we'd split it up and sort out the cash when we got home.)

- lots of petrol, plus various car repairs and accessories. (I can't drive, but I often bought petrol for friends who drove me places and wouldn't accept any cash, and for Pip I also covered minor repairs on his car because without it I lost a lot of mobility).

I'd also occasionally buy larger or more expensive items for friends who didn't have the credit card/internet access combination at their disposal. They'd give me the cash, I'd order their (whatever), and it would be delivered to my address - because I was in most of the time anyway, and unlike the post office, they could collect from my flat outside working hours.

So I probably credit-profiled as a car owner/driver who shopped for a household of two or three adults and one or two young children and who had a reasonably high amount of disposable income for personal electronics. Which would be rather at odds with my claim to be a single disabled person, in a tiny one-bedroom flat, too ill to drive, no kids, and a low income.

It's just as well I'm not on IB any more otherwise they would have wasted a *lot* of time investigating me. But these sorts of informal money-saving measures are common amongst people on low incomes or with limited resources.

The other thing that tickled me was the idea that they will be looking for people spending money on gardening or DIY. You show me a person with a long-term medical condition and I'll show you a person who has been told by at least three medical professionals that they should try a spot of gardening by way of occupational therapy.

Geek/crip crossover

2010-08-06T08:22:00.003+01:00

I just know that a lot of the readers of this blog will appreciate today's XKCD, even if they don't already follow it.

Description: A person saying "The sleep deprivation madness worsens. Things seem unreal. Am I even awake? Maybe I'm dreaming."
The person approaches a tree with a squirrel climbing on it. The person says "I'm pretty sure I'm hallucinating this tree. But what if I'm hallucinating that I'm hallucinating and I'm actually totally sane?"
The squirrel replies "Listen. I wouldn't worry about that."

XKCD usually adds an extra comment or punchline as alt-text. Today's is "I'm not listening to you. I mean, what does a SQUIRREL know about mental health?"

I loved this strip on so many levels. It's a perfect depiction of the kind of existential worry that you only encounter when you're sleep-deprived and/or drugged up to the eyeballs, when your grip on reality is slightly fuzzed and you start to ponder the nature of reality... after all, if I am hallucinating, I will be the last person to know that my hallucinations aren't real because they'll originate from my own brain! Maybe I'm hallucinating Steve, or hallucinating the internet...

(That's what usually settles it for me. I could not possibly hallucinate even half the stuff I see online.)

(edit for picture width, although I'm still not sure I've done it right.)

Loop

2010-08-03T17:27:00.002+01:00

Problem: In pain.
Solution: Take painkillers.

Problem: Cannot take painkillers on empty stomach.
Solution: Eat something.

Problem: Cannot prepare meal, even microwave meal, while in this kind of pain.
Solution: Eat something small that does not require preparation - a couple of biscuits, a bag of crisps, a slice of bread.

Problem: That is not a balanced diet, and if you don't eat the 'proper' food in the fridge, it will go off and you will be wasting money and killing the planet and what about the Starving Children In Africa.
Solution: Eat 'proper' meals as well, including meat/protein, fruit/vegetables, dairy products, and rice/pasta/potatoes.

Problem: Eating more calories than I burn. Cannot afford to buy whole new wardrobe.
Solution: Cut out snacking between meals.

Problem: Cannot take painkillers on empty stomach.

It annoys me that after six years I still get stuck in this loop on such a regular basis.

Save the Dates

2010-07-18T10:59:00.003+01:00

Another task on the wedding list has been completed - most of the Save-the-Dates have been received by our guests and that means I can blog about them.

Not everyone chooses to give out Save-the-Dates but the idea behind them is pretty simple. Once the wedding was booked, we wanted to make sure our important guests knew the date and venue as soon as possible. Hopefully this means that when the date rolls around, no one has to beg off attending because they booked other plans already.

On the other hand, it's still a good ten months or so to go. Sending out the actual invitations at this stage, complete with all the information about the food, facilities, directions, accommodation, and so on, would just be a sure-fire way of making sure everybody lost that information long before the wedding - not to mention that some of the information may well be out-of-date and inaccurate in ten months' time. I don't want to be sending out the formal invites until two months before the wedding, at the earliest.

Save-the-Dates bridge the gap nicely. They get tucked into the diary or stuck to the fridge in a way that is much more noticeable than a spoken reminder during conversation. They're usually postcard or business-card sized, and there's a bit of a fashion at the moment for them to be magnetic. I hopped on Vistaprint and found that magnetic business-card-sized Save-the-Dates, with a standard design and our text, would cost £5.49 for 25 - so including P&P, we'd probably be looking at just under £15. I picked out what I considered to be the three least-offensive designs and asked Steve what he thought.

He was not impressed. Even when persuaded that they were a good idea, he wanted something more "us". One thing led to another and soon I was busy googling to see if it was possible to buy or make personalised “magnetic poetry”.

Turns out it’s very possible. Magnetic paper suitable for use in a home inkjet printer costs £2.65 for a pack of 5 sheets. I ordered two packs - I can't see how having some spare magnetic paper will ever be a bad thing. While I was at it, I also ordered some little ziplock baggies to keep all the bits in, which was £1.60 for 100. Much more cost-effective than ordering ready-made cards!

While waiting for these items to be delivered, I flexed my mild obsession with spreadsheets:

Handily, since my Guest List spreadsheet is one line per household, it was easy to know exactly how many lines to 'Fill Down' with the words. I was very lucky - our number of words and number of guests enabled me to fit the whole thing onto two A4 sheets. I did do a couple of extra lines as spares, but on the whole there was no wastage. It helped not having to order in multiples of 25 as well - we have more than 25 households to invite, but less than 50, and I'm not sure what I could have usefully done with the dozen or so spare cards.

A few days later all the bits arrived, and joy of joys, the magnetic paper printed perfectly, so it was off to Staples for the rest of the necessities. These consisted of a trimmer to cut the paper (£3.95), some plain, recycled wage envelopes (£4 for 50), and some decorative pirate and monkey stickers (99p per pack). We'd have needed envelopes and stickers for the factory-made cards anyway, so I'm not really counting those when comparing the prices.

I first cut the pages into strips with each strip containing one of each word. Then for each envelope, Steve and I selected a Page 1 strip and a Page 2 strip and placed them in the individual baggies as we sliced them into individual words. This was a lot easier than cutting all the words up and then trying to make sure that everyone got one of each.

(As a minor piece of added evil, each packet included one SuperFunBonus word like "wedding", "flowers", or "celebrate". Yes, we did drive several people bananas as they tried to figure out where that word was supposed to fit. Bwahahahaha!)

An example of the finished article:

And the neatly decorated envelopes:

For guests who have trouble with their hands and may prefer to not mess about with fiddly magnetic pieces, we did another magnet sheet with half a dozen nice, plain, square, one-piece notes. We also stuck a little piece of ordinary paper in the envelopes for families with children, explaining about the pirate-themed kids' entertainment we are planning and encouraging them NOT to invest in child-sized formalwear.

Steve has been writing extra words on the offcuts and the message on our fridge seems to change every couple of days. It's sort of sweet.

If I was doing this again, I would probably try and find slightly thicker magnetic paper - ours was 650 GSM and although it works, it doesn't have quite the same feel as normal magnetic poetry pieces. I would also try and draw (or get drawn for me) a cute little picture or cartoon, as having just text sometimes seemed a little sparse - having a single bigger section to pull it all together would have been nice.

All in all, it was a fun and affordable project and we've had a lot of good feedback (most frequently "even if it hadn't had the names in, I'd have known it was from you two," which we are both taking as a compliment). It's also interesting to see the different layouts that different people have been using when assembling the words. Transferring that responsibility to each guest has meant no etiquette agonising about whose name should go first or in what order the information should be presented.

Grounded

2010-07-12T13:53:00.003+01:00

It's been a glorious month of whizzing about in my new wheelchair. From posting my own letters unaided, to trundling around shops at my own pace, to attending meetings and events, it has been amazing.

Right up until Sunday morning.

I connected the wheels to the charger and, instead of charging, it started beeping at me in a most distressing manner. A flustered few minutes with the manual, looking up the "acoustic signal" in the two-page Error Messages table, revealed that one of the wheels knows the charger is plugged in, but cannot detect a current. Swapping the charger plugs over showed that the issue was with the wheel, not the charger. The wheel must be sent for repair.

Then I burst into tears.

Sounds silly, doesn't it? Until five weeks ago, I didn't have powered wheels, and yet I was perfectly happy. But having grown used to them, the idea of them being taken away was simply shocking. It was almost as bad as the first time I fell over and couldn't get up. A huge sense of bewilderment, frustration, anger... even betrayal, if it's not too weird to use that word about an inanimate object or your own body. And powerlessness. That's a big one.

Technically the wheel hasn't been taken away yet. It's sitting right here in the room with me. A flurry of emails and phone calls has resulted in a "pass the parcel" arrangement, where the manufacturer will send a brand new wheel to the vendor today (or possibly tomorrow seeing as it's already after 3pm), the vendor will check it and courier it on to me, and then in a few weeks' time when a rep from the vendor happens to be in this neck of the woods, he'll take away the defective one. I've been told to keep the brand new wheel, probably because the expense for them of reversing the whole process to move a repaired 24-inch, 11-kilo wheel across the country in order to exchange for what will by then be a used one is not cost effective.

I am really, really, REALLY regretting that I was dumb enough to get swizzed into purchasing the wheels from the big national chair vendor rather than my first choice, the local Shopmobility (not licensed to sell the chair I was assigned, but could have sold me the wheels. It's a long, boring, complicated story). If I'd stuck to my guns and bought from Shopmobility, I could have been down there in a taxi sorting it out face to face by now. But hopefully I've been enough of a pain in the backside to the current vendor that they will come good and I'll have a new wheel in a couple of days.

So. I still recommend the e-motions - frankly, even this one month would have been worth re-mortgaging a kidney - and I cannot wait to get my shiny new wheel, but I'd really suggest being prepared for the fact that it may go wrong, and shopping locally if at all possible.

Edit added one week later, on Sunday 18th July 2010
Instead of a courier with an entire new wheel, they sent a repair guy on Saturday morning. Unfortunately they had only provided him with half the wheel components, and naturally this did not include the half that was malfunctioning. So it looks like I've got another week with no power. Well, either that or going round in circles.

Stratford Chain Ferry

2010-06-29T17:49:00.003+01:00

Just a very quick post about a little adventure Steve and I had at the weekend.

We went to Stratford-upon-Avon on Sunday afternoon, and a lovely place it is, especially in the summertime. We may also have been aided by the fact that there was some sort of sporting event happening that afternoon, so we were very nearly the only English people wandering about.

Thanks to the Chair Of Awesome, I no longer have to make the choice between staying within a few metres of the car, experiencing incredible pain, or assigning someone else the job of pushing me. So for the first time, we were really able to wander about which was great.

We enjoyed a bit of a stroll along the bank of the Avon, and then we spotted the ferry.

Built in 1937, the chain ferry is safely pre-DDA and I'd pretty much dismissed it out of hand when I heard about it as "things that just aren't designed for wheelchairs" - I don't tend to expect anything pre-war to have great access. Nevertheless we decided to mosey over for a look because, if nothing else, it's an engineering curiosity and worth a look.

I was quite impressed, then, to see that there were decent not-too-steep side-on ramps down to the jetties on both sides, and that the operator's answer to "can we bring the wheelchair aboard?" was "of course!"

The fare was a princely 50p per person.

The ferry itself does have three steps down into it at each end, but there are sturdy rails all over it that come right up to chest height so there's plenty to grab. Best of all, the operators had almost definitely had some training in disability issues, as their attitude could not have been better (or maybe they're just exceptionally nice young men). One of them physically held the ferry as stable as possible against the bank, and they also did the marvellous thing of asking and offering help for getting me down into the boat rather than grabbing and interfering. The same at the other end. I was really pleased about getting to do something I didn't think I'd be able to do, and thanked the guys for their help - to which one of them replied "it'll be better soon hopefully - we're trying to get a ramp to go into the ferry itself."

Ooh, I felt like applauding, and was a very happy bunny as we trundled away from the jetty towards the Brass Rubbing Centre and the Courtyard Theatre.

I don't know (and haven't been able to easily find out) whether the chain ferry is privately owned and run, or if it's the council, or some kind of conservation charity, or a combination of all the above.

But I was really impressed to see an historic curio making the effort for access in terms of both the physical environment and the staff attitudes, rather than hiding behind its age as a reason for not making any effort at all.

Dear Internet, Please Help

2010-06-27T08:06:00.003+01:00

Time for a wedding post.

The plans are all coming along very well, and bar a certain amount of cash to be handed over, we have everything we need booked and in place for the wedding.

This gives me a cool 11 months to fret and fuss about the trimmings - call it eight to account for my tendency to want everything done in advance.

One thing I had been pondering was gloves. It's much, much easier to propel the wheelchair wearing gloves with a leather palm, as it means the grip is part friction, rather than having to be entirely based on the muscle-power of my hands repeatedly clutching and releasing the push-rims. Seriously, after the first day's use, my hands were every bit as sore as my shoulders. I currently use these cheap cycling gloves from Halfords and very good they are too.

What they are not, however, is 'attractive' or 'weddingy'. You will also notice that despite being 'fingerless', they do cover up that bit at the base of the finger where a ring sits. On my wedding day, I do want to be displaying my wedding ring. But I also would like to not hurt my hands.

A lovely woman on a wedding board I frequent showed me a couple of glove designs that I'd never even thought of: Design 1, Design 2. I was thrilled.

But, picky me, I don't want black (it seems less 'wedding' and more 'special interest') and although of the two I prefer the second design, the palm really needs to be grippy, frictiony leather rather than spandex. I'm googling my way through but it's a bit time-consuming trying to filter out all the cricket gloves, boxing gloves, defunct websites, websites that appear in a UK search but only service the USA...

Does anyone have any ideas, contacts in the UK custom leatherworking industry, or other potential solutions?

Budget 2010: DLA

2010-06-24T07:57:00.002+01:00

Earlier this week, the new coalition government laid out their emergency budget. Many key points, like VAT rising to 20% and child benefit being frozen, are interesting, but I'm not qualified to comment.

What I am qualified to comment on is DLA, or Disability Living Allowance.

Before we go any further, the standard recap. There are two major types of "disability benefit". One is Incapacity Benefit/ESA, which is given to people who are unable to earn a living due to impairment or disability, to cover their basic living costs like food and bills. The other is Disability Living Allowance. This is money given to disabled people, regardless of whether they work or not, in recognition of the fact that disabled life involves higher expenses - having to run a car/get taxis rather than walking/cycling/using public transport, having to buy more expensive prepared meals rather than cooking from scratch, having to purchase and replace mobility aids, etc. Not all ESA claimants get DLA. Not all DLA claimants get ESA. They are different and separate benefits.

The coalition has stated that:

The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.

Let's start with these "objective medical assessments", because it seems to have given a lot of lay people the idea that DLA is currently given without medical evidence.

That's simply not true. Firstly, on the form you have to submit details of your GP, and any specialists or other healthcare professionals you see (from consultants to physiotherapists). You are also encouraged to submit any relevant medical reports, and copies of current prescriptions for medication or equipment. Secondly, they write to your GP, who is asked to fill out their own form commenting on your needs and also confirming the medical tests and assessments they have sent you for and the results. Thirdly, if the decision maker feels there is not enough medical evidence, they can demand a medical assessment by a private doctor or other healthcare professional working for a private company, Atos, who are paid a large amount of public money to conduct all government medicals (because asking NHS doctors to do it would just be too economical).

(Interesting aside: did we all see this story about Vikki Bell, a woman who worked for the DWP, was declared unfit for work by Atos in their capacity of assessing government employees, attempted to claim ESA, and was declared entirely fit to work by Atos in their capacity of assessing benefit claimants?)

So let's not pretend there's no medical assessments at present.

Moving on to "ensuring payments are only made for as long as a claimant needs them" - in their Poverty, worklessness and welfare dependency report the coalition made it clear that they regard it as a big problem that 1.1 million people of working age are "persistently" claiming DLA for five years or more.

Well, yes. You cannot claim DLA unless:

1) You have a terminal illness and are expected to die in the next six months.

2) You have had substantial care and/or mobility needs for at least three months and are expected to have them for at least another six months.

It's not a short-term benefit for easily-curable illnesses. It's mostly awarded for permanent issues, and many (perhaps even most, although I don't have the figures to hand) claimants are unlikely to regain their sight, or find that their legs have grown back, or otherwise experience a miracle cure within five years.

And it's also - apparently we cannot repeat this enough - NOT a worklessness benefit.

I am capable of some work. I work. I have worked continuously for almost three years. I earn money. I pay tax. I pay NI. I claim DLA. None of this is contradictory.

I would not, could not, stop claiming just because I work. Once I am using up time and energy on work, I have less time, energy, and flexibility for trying to manage my care needs. Once I am working, it is even more important that I have the ready cash to get taxis when I need them because I can't arrange working life around when a friend can give me a lift. It is more important that I have the extra funds to afford ready-meals or takeaways because I cannot spread a cooking effort out over the entire day. It is more important that I have money to enable me to repair and replace my mobility aids ASAP, using expensive courier services, because I can't afford to be housebound and not working while waiting for a Slow Super Saver postal rate.

Damn right we claim "persistently" - I think it is a forlorn hope on the part of the government that reassessment will cause our needs to vanish or that getting us off DLA will get us into work.

But then, for all the rhetoric, getting us into work isn't the point of the exercise. The point is to reduce the cost. If the only way to do that is by shifting the goalposts (while skimming a nice chunk off the top for their friends at Atos, the private company who conduct all government medical assessments, by creating a need for even more assessments) then that is what they will do.

I suspect the "object" of the new "objective medical assessments" will simply be to declare more people ineligible, regardless of their real needs or the impact the withdrawal of DLA will have on their lives, thus reducing the benefits budget. Regrettably, the eligibility might be reduced but the needs will remain, and someone will have to pick up the pieces - probably the already stretched and rationed health and social care services, as explained by Bendygirl.

New Chair!

2010-06-10T09:27:00.004+01:00

No, I don't have any pictures of it. I've been too busy whirling around in it to take any.

First, on Tuesday afternoon we went to Solihull, a town with a shopping centre that does unusually well on the access front, as well as a significant amount of it being indoors. It was an excellent 'training area'. Solihull also has a Hotel Chocolat. Ahem. Training opportunity. Accessible environment. Learning to use chair. Yes.

Then on Wednesday morning I got to use the chair for one of its specific stated purposes. I went to post a letter. The postbox is about 500m away so this was a trip of approximately 1km.

At this point the freedom went to my head and I decided that, dammit, for no particular reason I was going Up The Hill. Power to maximum. Anti-roll facility on. Leaning forward so that my shoulders were practically touching my knees, to avoid tipping the chair back.

(Honourable mention to the young woman coming out of her house halfway up the hill, who not only asked me if I wanted any help - gaining Good Samaritan points - but also accepted my answer of "no, it's okay thanks, I've got batteries," without any fuss, which is perfect.)

I got there:

The focus on my phone's camera isn't really set up for rolling vistas and the weather wasn't great, but you can see the significant gradient of the hill and a hint of the lovely fields beyond.

Admittedly I was a bit out of breath by that point. The salesman who took me for the test drive had used a chair that really was very different, and I should not have taken his word for it that it was comparable. On the other hand, my Access to Work grant specified that I was allowed this exact chair and no other, so it's not like it would have made a difference to the sale.

But of course I had a chair with me, so it was perfectly okay to just sit at the top of the hill and relax for a few minutes. And then... then, I got to go down the hill. The wheels are very clever indeed, the tiniest pressures were enough to make sure my descent was calm, controlled, and effortless. Then it was the 500m route home.

('Special' mention to the woman in the huge tank of a car who pulled up alongside me on my road, and then sat there impatiently waving me past. I was confused, because I wasn't in front of a driveway or anything, so I just smiled and carried on. Then as soon as I was past, she parked her behemoth up on the pavement - the entire pavement - neatly blocking the path for any other wheelchair user or person with a pushchair, and probably quite a few regular pedestrians. Inconsiderate cow.)

I'm feeling it in my hands (from gripping the push-rims) and my shoulders (from constantly moving back and forth), and I also have that very particular ME/overdid things feeling of a sore throat, random tingly sensations, and lurching vertigo. But it's not as bad as I was expecting and as long as I'm very careful today I should be alright.

And Up Again

2010-06-07T13:30:00.003+01:00

I've spent the last month or so having a bit of an ME flare-up, which hasn't been nice. What's positive, though, is that I've been ill for long enough to be able to identify that it's just a flare and deal with it accordingly. In real terms that means doing lots of things for ten minutes at a time. So, a quick run through of my usual topics...

Steve
Is lovely. He's not enjoying the heat very much (he prefers to be cold and add layers) but we've still been out in the sunshine a few times when it hasn't been too stiflingly hot - barbecues, cream teas, going to the park and suchlike.

Pip and The Boy
The Boy is fine and continuing to grow like there's no tomorrow. Pip, on the other hand, is suffering a bad case of Clumsy at the moment and has managed to sustain two entirely different injuries requiring hospital treatment in as many weeks (and on separate occasions). He says the most upsetting thing is that he is currently perfectly capable of making a cup of tea, but lacks the capacity to carry it anywhere. I desperately hope this is not the set-up for a "scald" injury to complete the set.

Wedding
Plans for the wedding are coming along nicely. We have fixed our date in May next year, booked the registrar, made an appointment to give notice, and chosen and booked our venue. We've also forked over the deposits, which means that even if we don't manage to decide on anything else, we now have everything we need in order to get legally married.

However, we haven't paid the premiums for an Approved Premises wedding (extra for venue hire, extra for the registrar to travel, etc) just to turn up in jeans and t-shirts and drag a couple of witnesses in off the street. So there's still an awful lot of planning to be done.

Business
The business is off the ground now, with "real" paying customers who didn't start off as personal friends, a website, some wonderful artwork, and best of all some really interesting jobs. Some boring ones as well, it is true, but one research project in particular I had an absolute whale of a time doing.

I really want to show it all to you, not least to give due credit to the terrific people I've worked both for and with. Also this blog, with regular-ish content, quality comments, and four years of archives, has a respectable Google PageRank which would give my business website quite a boost if I linked the two. But for now at least, I really want to keep my business and personal online identities as separate as I can.

Wheelchair
Allegedly due tomorrow morning. However given the previous issues and timelines so far (applied week1 February, assessed week1 March, approved week3 March, test drive week2 April, placed order and deposit week2 April, now it is week2 June) I am trying to not hold my breath and haven't booked any activities yet. However my friends and I have been coming up with lots of ideas for things I could do, including but not limited to:

The Cancer Research UK Race For Life next year - I won't be getting a winning time, but I should be able to accompany a friend who is expecting to walk around.

The Stratford Town Walk which is allegedly both free and accessible.

Getting a Disabled Person's Railcard and going places by train.

Going around Ikea and only needing one assistant.

Even if I don't do any of that, though, it will be nice to just go round the block and post a letter without needing help to open the garage or someone else to push or drive me. I fully expect Steve to have stuck a proximity tag on me within a month.

Anger at Current Affairs
Um, let's not. Even if I could whittle it down to just one target, we would be here far too long. Let's just say that I don't feel very represented by the new Cabinet (not that the old one was better) and can only hope that the extraordinary wealth and privilege that they do represent brings with it a sense of noblesse oblige.

Such Tweet Sorrow - applause

2010-05-13T21:24:00.002+01:00

Previous posts:
Such Tweet Sorrow posted on April 12th, 2010.
Indescribable posted on April 18th, 2010.

For never was a tale of more woe,
Than this of Juliet, and her Romeo.

That may be true. But this afternoon, when I told Steve that the five-week Twitter production of Such Tweet Sorrow was finally over, and he jokingly asked "was there a happy ending?" the answer, strangely, was Yes.

I mean, okay, four out of six characters died. But the difference in the medium changed the place where the play ended and therefore the feel of the ending.

If you see Romeo and Juliet on stage or film, you barely have time to wipe your eyes at the end of the suicide scene before you are presented with the Prince's summing-up and a curtain call.

In real-time, however... Juliet drank the sleeping draught on Tuesday night. Romeo found her early on Wednesday morning. For about an hour he agonised over what to do... then his not-so-quick drugs took another hour to work, and all we knew was silence until Juliet awoke. She took half an hour to assess the situation, sent out a heartfelt goodbye to her sister (Jess, the "nurse"), and then it was silence again until Jess found the bodies. Those long silences really took an emotional toll on the involved audience (affectionately known as #teamchorus).

Too upset to be delivering a neat and tidy epilogue, Jess spent the afternoon and evening railing at her father and portraying despair in messages that were chillingly close to those sent by the young lovers before their deaths... followed by... silence. Jess being an altered character, no one knew whether she would be likely to do something drastic. I went to bed on Wednesday night half expecting to hear news that she, too, had killed herself - the relief on Thursday morning when she tweeted complaining of a hangover was immense. Especially since Jess was one of the more likeable characters.

Over the course of the morning, Jess (and the audience!) got to grips with the facts of the deaths with the benefit of a night's sleep. The summing-up was then delivered as dialogue between Jess and the Friar and although there was a sense of loss, there was also a sense of survival and new beginnings. It felt like a positive ending.

Apparently there is a curtain call tomorrow, which I am very much looking forward to. If nothing else, I need to tell Charlotte Wakefield that it's just Juliet I couldn't stand, and that since Juliet is now dead, I no longer bear her any ill will. I might have *ahem* been a little bit aggressive about my dislike of Juliet and I really hope the actress doesn't take it personally.

Was this an accessible performance? For me, yes. Certainly it saved me from having to deal with practical access issues in and around Stratford in order to experience an RSC production (although I still want to do that one day). And the beauty of Twitter is that if you need to sleep or medicate or stretch or rest or throw up, all of the play is right there waiting for you to catch up on when you come back. However, there were a lot of tweets, and I know several people had to drop out on that basis - in many ways it is easier to devote two hours of undivided attention to the play in isolation, than to immerse yourself into a production that has more in common with a role-playing game than a theatre visit.

I will definitely want to be involved in another Twitter-Shakespeare project. A large part of that is because it is a case of "being involved" rather than merely "watching". Accessible interactive theatre in your own home, where you respond to the characters and the characters respond to you - it beats TV.

All that remains is to stand and applaud:

The Cast
@romeo_mo - Romeo Montague - James Barrett
@julietcap16 - Juliet Capulet - Charlotte Wakefield
@LaurenceFriar - Laurence Friar - Geoffrey Newland
@mercuteio - Mercutio - Ben Ashton
@tybalt_cap - Tybalt Capulet - Mark Holgate
@Jess_nurse - Jess "Nurse" Capulet - Lu Corfield

Producer
Charles Hunter

Director
Roxana Silbert

Writers
Bethan Marlow
Tim Wright

All at Such_Tweet, The RSC, Mudlark, 4ip, and Screen WM.

My fellow #suchtweet Groundlings including #teamchorus and #mercutiogroupies

and the mysterious @jago_klepto...

Stop

2010-05-06T14:31:00.002+01:00

Sitting in Steve's study this morning, sharing the first cuppa of the day, catching up on the overnight Twitter feed but discussing nothing more weighty than whether we had a good night's sleep.

A thought occurs to me, I raise my head and start with "Steve?" but before he can respond, a scythe of pain slices through me, somewhere behind my eyeballs. I can't see, the world spins, I want to lie down but I can't work out which direction that might be.

Stop.

There's ways and ways of saying Stop. Steve knows me well enough by now to understand what this one means. He doesn't ask questions, he doesn't move, he doesn't fuss, he just stops and waits. If we are lucky, I'm going to catch myself and slowly work back up to speed. If we're not lucky, he'd better be ready to catch me and make sure I don't knock the cups over.

Time passes, but we are a tableau, a freeze-frame, suspended animation. With an effort I breathe in, and then back out. A brightly-coloured wriggling skewer of pain dances in the cavern of my skull which suddenly seems to be much larger than any part of my body has a right to be. I breathe again and my outstretched hands identify the edge of the guest bed, which my upper body gratefully sinks onto. The duvet fills my eye sockets with calm, refreshing darkness, and the vicious little spears of pain begin to dissipate into a cloud which is bigger, but more muted and easier to cope with.

Slowly, the passage of time reasserts itself. Gently, Steve begins to move and both of us make a conscious effort to relax again.

Soon we start to giggle about the unfairness of him being effectively told to shut up before he's had a chance to say anything. The tea has not quite gone cold. I will have to be cautious today, avoid pushing my limits, but as long as I'm careful, I should have the spoons to manage everything essential.

Life goes on.

One of the 'essentials' today was to go and vote, with the help of my PA. I'm pleased to report that it was an accessible experience - we were able to park at the polling station, wheel in without difficulty, there was a wheelchair-height polling booth available, and I was politely advised that if I had difficulty reaching to post my paper into the ballot box, I could ask one of the officials to do it for me. I didn't - but the offer was appreciated.

BADD 2010 Roundup

2010-05-01T11:15:00.002+01:00

As usual, here are my five favourite posts from BADD 2010 so far. Bear in mind that once again the total contributions are well into three figures and I have not managed to read all of them. I may have missed the best post ever.

First up, we have Angelikitten's post about Voluntary Accommodations, exploring the positive difference accommodating attitudes in the workplace can make - and thus highlighting what a barrier negative attitudes become to disabled people who are willing and able to work if they could only rely on such adjustments being made.

Heather at OhWheely posted about those people who don't seem to realise how much more difficult they are making our lives by refusing to do their jobs properly. She also raises the impossibility of fighting every battle and the balancing act of trying to say "this is unacceptable" without sounding like a whinger.

Stephen at Single Lens Reflections brought some much needed comedy relief - and a valid point about two-way assumptions - with his wonderful post Flying the Red Flag of Understanding.

More Than A Mascot is a post from Bethany about the importance of proper, meaningful inclusion rather than sidelining and patronisation of disabled kids in mainstream schools.

And finally, Assiya at For A Fairer Today wrote Submissiveness, a post about having to be cautious because help and acceptance can be very conditional. This one really twanged for me - I am constantly conscious of not wanting to challenge or 'bother' doctors, social workers, etc, for fear that they will withdraw what assistance they do give.

Till next year...

It's not Bridezilla to want access

2010-05-01T07:37:00.004+01:00

Written for Blogging Against Disablism Day 2010.

Regular readers will know that my life at present divides into two main areas:

Planning my forthcoming wedding.

Running and developing my business.

While working on these projects, I have again and again encountered two important truisms:

"Wedding" translates roughly as "add another zero" - there's a lot of money involved.

Business is about persuading other people to give you money.

Everyone happy with these starting principles? Then let's move along to the disability angle.

I am a part-time wheelchair user. At my wedding, I will be walking down the aisle (I'm hoping to get one of these gorgeous walking sticks for that bit), but I will be using a wheelchair right up to the ceremony room door and for most of the reception. There's just no other way that I will last the whole day and yet still be able to participate.

This adds a whole range of access requirements. At other people's weddings, I'm prepared to shuffle in side entrances, withdraw to the car for a nap, sit on the floor or crawl up steps if necessary. On occasion I've attended for just the ceremony or just the reception depending on the preference of the happy couple. But damned if I'll be doing that at my own wedding. It's not Bridezilla-ish to put the needs, wishes and comfort of the bride and groom directly at the top of the priority tree.

And I swear, it's like watching a bathtub emptying as the possibilities dwindle to almost nothing on the simple query "can I get in?"

Venue is the obvious one. As a small business owner, I have been repeatedly made aware that I have a duty to consider how disabled people might access my products or services, and what adjustments I might put in place to improve access, even if it is not reasonable for me to make those adjustments at this stage. Make it as easy as possible for as many people as possible to give you as much money as possible.

Some places are honest enough to simply declare on their websites that "owing to the historic nature of the property" they'd like wheelchair users to just f--k off. They don't phrase it quite like that but it's the message loud and clear - they're not allowed to say "No Blacks, No Dogs, No Irish" any more but the cripples can Keep Out. Worse than that, though, are the ones who haven't given it any thought at all. And worse still was the hotel who claimed they had great access throughout, invited me to visit, and then we found out that the ceremony and reception rooms had decent access but there was no access to any of the other facilities included in their wedding package, such as the Bridal Suite or any other 'deluxe' room, the swimming pool and spa, the gardens, the bar, the restaurant...

I could go on for days about the barriers I've encountered, but suffice to say that based on physical access alone, from the 50 or so local venues in a range of styles and prices that a non-disabled bride could choose from, my pool of choice was down to about 10 (call it 8 because I am NOT getting married at a Holiday Inn) and it took a couple of hours of emails and phone calls plus several of my precious Social Care hours to find out that much.

I should not have to work so hard to try and spend a Wedding amount of money.

Wedding dresses are the same story. I need to be able to stand up and sit down in my dress (or possibly trousers, might be easier, not sure, but we'll stick with saying "dress" for now) and still look bridal. So the chair is definitely going to have to come in with me for dress shopping and fittings.

Another half hour or so on the phone reveals that there are NO wheelchair-accessible bridal shops in Leamington.

There's ONE in Warwick, the next town along. Possibly two - the person I spoke to told me something something side entrance should be wide enough because they're sure they've had "wheelchair people" in the shop before. The others were basically trying to persuade me that I should be prepared to crawl up and down the stairs (remember these people knew nothing about why or how I use a wheelchair) and that maybe I could get a friend to carry the wheelchair up the stairs for me.

I wonder, do they propose that non-disabled brides should attempt to do an assault course with a bridesmaid on hand to do weightlifting, just for the privilege of handing over a Wedding amount of money?

One even told me "well you have to make the effort." Excuse me, no, I don't. I am the customer. You are the business. You have to make the effort to get my money by making it as pleasant and easy as possible for me to hand it over. Not by treating me as an inconvenience and expecting me to work for it.

Business owners have a duty to consider how disabled people might access their products and services, and what adjustments might improve access. Failing to do that, particularly in the wedding industry, means failing to understand those two simple starting points - that "wedding" means "add another zero" and that business is about persuading other people to give you money.

I am enjoying the wedding planning; I have found a venue that meets our needs and I'm sure I'll find a dress as well, one way or another. But I certainly don't feel that my experiences are matching those of a non-disabled bride.

Blogging Against Disablism Day will be on 1st May, 2010

2010-04-22T14:13:00.003+01:00

Once again, the esteemed Diary Of A Goldfish is hosting the blogosphere's annual Blogging Against Disablism event. As usual, this is not a carnival of previously posted material or a "best of" selection - it's a co-ordinated effort of many people all posting fresh material on the theme of disablism.

Full information is available at the Blogging Against Disablism Day signup page along with links to archives from previous years.

Remember, you don't have to be disabled to join in. Disability is not an isolated experience and it's not something that anyone is immune from. I know I link to this every year, but I'm going to do it again - Lady Bracknell's One in Seven post spells out just how relevant, and how unacceptable, disability discrimination is to all of us.

You don't need to write an essay. You don't need to write at all. You can post video, audio, artwork, any format you like. This is about making our voices heard.

You also don't need to be filled with righteous anger or have your protesting hat on. There's room in BADD for everything and that includes some nice positive examples of the change that is slowly but surely happening. And you don't need to worry about getting all the words right - as usual, we have a Language Amnesty to account for cultural differences and to allow those who aren't politically involved to post without fear of being attacked for failing to use the most 'current' terminology.

Hope to see you there!

Indescribable

2010-04-18T21:07:00.003+01:00

In my last post, I talked about the Twitter event Such Tweet Sorrow, a production of Romeo and Juliet being played out in real time over five weeks.

We're one week in and it's still a really tricky concept to describe. The biggest problem is that first, you have to describe Twitter itself which is still really hard to do for anyone who isn't already using it. Trying to describe the Such Tweet project itself, on top of that, before you can even begin to talk about how much you're enjoying it, what you think about it, how it makes you feel... it's nigh on impossible.

I'll give it a go anyway. I think Such Tweet Sorrow is most like an immersive fantasy game along the lines of Dungeons and Dragons or perhaps Knightmare. A bunch of people improvising within their given character descriptions interact with you; you are supposed to pretend that they really are those characters. Except that it doesn't require special equipment, like-minded friends, pens and paper, or time set aside to play, and it continues 24/7. As a Twitter user, it slots almost unnoticeably into the life which I am already living.

That's the bit that makes it a little disturbing. Due to the circumstances of my life - I am disabled, I work alone from home, I cannot drive and am waiting on a decent wheelchair - most of my interaction does happen online, and as such I do have several good friends (not to mention clients and suppliers) who I have never physically met.

There are also dozens, if not hundreds, of people who I consider to be part of my wider social circle. We're not friends in the sense of having heart-to-heart private conversations about our innermost feelings, but there's some shared interests, some common acquaintances, and we've had a couple of brief direct exchanges - we're friendly even though we're not bosom buddies. This is the area that the Such Tweet cast fall into. The stream of posts about whatever happens to be on their characters' minds - the progress of a football game, a trip to the pub, a crap day at school - is melding seamlessly into all the other incoming tweets about Dr Who, Mad Cap'n Tom's bid for Parliament, current affairs, Naidex 2010, and biscuit preferences. Every so often, I reply to an incoming tweet. Every so often, someone replies to one of my tweets. It's incredibly normal social networking and an outsider with no knowledge of Shakespeare or the Such Tweet project would probably not be able to pick out the fictional characters.

With it all being mixed in, the line between characters and real people gets blurred. I am reacting to the characters' tweets in the same way I would react to those of real people. The most striking example of this for me so far was yesterday, when @laurencefriar sent out a tweet about meeting some "courageous" disabled football supporters. Anyone who knows the Ouchers knows that the best way to get our hackles rising is to start throwing around words like "courage" "brave" and "inspiration" and I simply couldn't help the way it made me feel (ie: angry). I had to seriously remind myself that @laurencefriar is a made-up character who is supposed to be the sort of person who comes out with tripe like that. Then I thought, well, I'm supposed to respond, an emotional response to well-performed characters is entirely permissible and means the actors are doing their job right.

But it's made me start to worry about what's coming. The writers have admitted that they're not observing a religious adherence to Shakespeare's storyline, but it's safe to say that the basics remain in place - which means it's not long to go before there are a couple of violent deaths in my social circle.

If I find myself getting angry about "courageous" then who knows how I'll react to that?

Such Tweet Sorrow

2010-04-12T11:43:00.003+01:00

And now for something completely different.

There is a bit of an art project happening on Twitter for the next few weeks. Under the title Such Tweet Sorrow, the tale of Romeo and Juliet will be played out, in real-time, in the social media environment.

No, we're not talking about a line-by-line recital of Shakespeare's work delivered no more than 140 letters at a time.

We're talking about a handful of people, each with a role that mmmmmmore or less translates over to modern times, tweeting in character about events, thoughts, feelings, as the storyline unfolds. At the moment they are setting the scene - so, for example, Juliet is tweeting about arranging a party for her sixteenth birthday in a couple of weeks, and Friar Laurence is blethering on about community outreach projects for disaffected youth, and Mercutio and his friends came fourth in the pub quiz. There's also a certain amount of incorporation of other social media, such as Juliet putting a guided tour of her bedroom on YouTube.

I'm quite fascinated by it.

One of the characters has already begun engaging with the audience - Mercutio tweeted that he'd woken up with a hangover and got in a discussion with a 'real' twitter user about hangover cures. From reading the tweets of one of the writers, it looks like the characters don't have to do this, but he's hoping they will. So am I, although I think it'll be a fine line to walk as they gain popularity... especially what with the whole "you cannot control twitter" can of worms. There's a space on the site for the #suchtweet hashtag and I'm not sure that's ever ended well.

The really confusing bit is that if the characters were real people, I'd have stopped following them already. Juliet is a naive and irritating 15-year-old over-privileged princess whose exclamation-mark use alone would have had me hitting the unfollow within an hour... but that's exactly who the character is supposed to be. Tybalt is the sort of sulky brat I'd prefer to avoid meeting, and while Mercutio would be great fun at a party I wouldn't give him my phone number. It's bizarre to keep reading all their tweets and reacting with "oh, FFS," and then remember that this is who they are supposed to be and it's integral to the story that they are vapid/sulky/whatever.

I'll be interesting to see how it develops over the weeks, both in terms of the characters and in terms of the audience. Usually you only care about what's going on in Verona for a couple of hours and it's constantly fast-forwarding to the 'interesting bits', not sure what will happen with this slow-burn thing.

I'm also really hoping to find out more about the smoke and mirrors part of it as well, the planning and preparation and involvement.

Test drive

2010-04-11T18:36:00.003+01:00

On Friday I had my test drive of the e-motion power-assisted wheels suggested by my Access to Work assessment.

The Invacare rep got the chair out for me and I sat in it for a while with the power-assist turned completely off, gently pushing backwards and forwards and just getting used to where everything was. The weight saved on the chair was added to by the wheels so it didn't feel too different to my existing manual chair (this is a good thing as it means if the power dies I will still be able to get myself out of the way). Then we turned the wheels on to the low setting.

Wow.

No exaggeration, I was propelling it with my fingertips.

It was a bit disconcerting... kind of like a combination of walking on stilts, and trying to stand on a balance board, you know what you should be doing but it's difficult to suppress your 'normal' reactions. In a standard manual chair, if one wheel is going a bit too fast you either tug on that rim a bit to slow it down, or you push the opposite one a bit harder to catch up. But the wheels exaggerate the force applied... I didn't come off the pavement or into anyone's garden, but it was a near thing for the first minute or so.

A couple of hundred metres later we reached the end of the block and the first uphill slope. Two metres in and I could feel some resistance (although bear in mind that with a non-powered chair I wouldn't have even got this far). So I clicked it to the higher setting, and effortlessly glided up to the road.

Now the learning really started. The kerbs around here, even the dropped ones, are a bit too vicious to just roll up. So I had to learn how to tip the chair. The way you tip a chair is by gripping the wheels and shifting your bodyweight... this allows the small front castors to get onto the pavement, and then you can tip down again and give the wheels a good shove to get properly onto the kerb. Obviously when the wheels are powered it's easier to do the shove to get the big wheels onto the pavement, but it's that bit trickier to do the tipping. Happily the wheels are paired with anti-tippers, sort of stabilisers that stick out the back so that although you can tip back a bit, you're less likely to go right over. More on that later.

That dealt with, we were on to the main slope. This part of the hill is quite steep. If the wheels were going to fail anywhere, it was going to be here, and while I hoped it would work, I was entirely prepared for getting halfway up and needing a rescue.

Nope. Straight to the top, and talking the whole way, too. We had a bit of a rest at the top - the rep needed to get his breath back after walking up the hill, and I needed to tweet about having got off the estate! I was a little bit sore, obviously, but rather than it being a muscular pain from over-exertion when pushing, it was more just the unaccustomed repetitive shoulder movement as I moved my arms back and forth to touch the wheels.

Downhill was obviously much easier. Again, the intelligent wheels made a big difference - rather than rubbing my hands and clicking my wrists trying to pull back against an uncontrolled freewheel, I just had to keep light contact which prompted the wheels to apply resistance to stop themselves getting too much speed. The tipping for the kerbs was easier second time around, and before I knew it we were back home, where we pulled up the spec sheet and started talking options.

As far as the chair goes: the basic bare-minimum cost of the chair is £1,129, and the added bits and bobs that are contractually compulsory add-ons for it to accommodate the e-motion wheels (superior axle fittings and suchlike) bring it up to £1,528. This pretty much matches my AtW grant for the chair which is £1,526.

There are a couple of other options I want on the chair which don't come as standard. Steve and my PA both have quite small cars, so I want to get the fold-down back to make the chair more likely to fit in the boot... that's an extra £265. I will still need someone pushing when I'm having a rough time or if the batteries die... Steve is very tall, my PA is my height, so height-adjustable handles, £174. Other options that would be a bit nice but not quite as important are the bag that clips in underneath the seat at £34, a seat cushion at £45, and mud-guards which are £108 (fixed) or £193 (removable). I think I'm probably not having those.

Then there's the wheels themselves, rolling in at a cool £3,995. My grant for the wheels is... £3,995. How handy! Unfortunately, those anti-tippers mentioned above? The ones that are an absolute necessity if I want to have any chance of mounting the rubbish kerbs near my house without landing on the back of my head in the road? An extra £240. I'll pay it, obviously, and I'm not complaining by any stretch of the imagination, but it's a bit of a startling unplanned expense whilst being the sort of "option" that I wouldn't really class as "optional". I would have really expected that to have been included in the original assessment along with axle fittings and brakes.

I didn't want to let the rep take the wheels away, even though the chair they were on for the test-drive wasn't quite the right size for me and a horrible colour. I'm getting really impatient to go out, especially with the sunshine! The plan is that next week, once I've really ironed out exactly what options I'm having and made my final colour choice, the rep will visit again to take a deposit and the final order. After that, it should be about two or three weeks before I can take delivery.

I am very, very, very excited.

Prince's Trust

2010-03-19T17:47:00.004Z

I had my panel interview with the Prince's Trust the other day, and the good news is they thought I was great, so I'm getting all sorts of support from them.

The most important part, to me, is being put on their "business mentor" scheme, where a young entrepreneur (I still count as young by their definitions, how good is that?) gets matched up to an older and more experienced businessperson who can offer guidance and support. This neatly bypasses the "if you know it all about business, why are you working for a teacher's wage rather than running a successful company?" question asked of all business studies teachers throughout the ages.

I have nothing but praise for the Prince's Trust so far. Everyone I've dealt with has been positive and flexible, and although there have been some unexpected access barriers I've revealed that they hadn't noticed previously, these have been dealt with rather than ignored. Admittedly not with perfect solutions, for example I had to travel to Coventry for the panel meeting and I had to pay my PA for that myself, which wasn't cheap - but on the other hand we shifted many of the things which would normally be onsite meetings to being email or phone conversations, or on one occasion, an advisor coming to meet me somewhere more local. I definitely feel like I've been met half way.

There was one marvellous moment in the panel interview where one panel member, trying to put me at my ease, started to say what I'm sure he says every time, something along the lines of "now please don't worry, I'm sure every applicant who sits in that chair feels a bit nervous but we're lovely really..." he got as far as the "ch" of chair before he remembered that he had moved The Chair because I was, in fact, sitting in my wheelchair. There were about two seconds of verbal hang-time before he grasped the word "position" and I swear, I felt like giving the man a round of applause for a wonderful save.

All in all, it's a definite improvement on the previous "business advisors" I was being passed around.

Wheelchair assessment

2010-03-09T11:53:00.003Z

Yesterday I had my Access to Work wheelchair assessment.

Wheelchairs are tricky things with strange criteria. If you tick all the NHS boxes, then you get a "voucher" towards the cost of a chair (although you may have to supplement this with hundreds if not thousands of pounds of your own money in order to get a chair you can live from rather than one which merely keeps your backside off the ground). If you don't tick the NHS boxes, then you get bog-all.

I don't tick the NHS boxes. My mobility is limited enough so that I warrant a "normal" manual wheelchair. However, since my arms are affected in much the same way as my legs are, a manual wheelchair is only any good to me if I have someone else pushing it. Obvious solution: a powered wheelchair. Unfortunately for me, to be eligible for a powered wheelchair you have to be needing to use a chair to get about inside your own home - which I don't.

I do of course have my scooter but to be honest, I've barely used it since I started working. It was great when I could go out on it for a few hours and then sleep for the rest of the day and most of the day after... but these days I just don't have the spare energy to be able to drive it all the way into town and back. It's also too big to put in a car or take in a taxi. And in work terms, it hardly enables me to present a professional image - I never cared if the shop assistants in town saw me rolling up windswept, rain-soaked and knackered from the ride in, but for potential client meetings it's a different ball game.

All this led me to ask Access to Work if I could have help getting a powered wheelchair from them. Hooray! They said yes, I could, although it would be subject to a wheelchair assessment from one of their people, and I would have to provide a letter from my doctor confirming that it would be medically appropriate and that I was fit to use a powered chair. Fine by me, and my GP has been more than happy to provide a supporting statement.

Access to Work sent a very nice man we shall call H to come and assess my needs. First we talked about what I wanted to be able to do that I currently can't do. Locally, I wanted to be able to go to the postbox or the little local post office by myself so that I could post my own letters and buy my own postage supplies without needing to arrange for an assistant or beg a favour. In the surrounding area I wanted to be able to do my banking, visit the main post office, attend meetings with clients or my Prince's Trust advisor/mentor, and access networking events.

Next, out came the measuring tape. Apparently I have very long legs. I need to find out how much I weigh.

Finally we started talking about possible solutions. And this is where I was gobsmacked. I was expecting him to suggest something like this, something that looks kind of like my scooter with the front end taken off.

His idea is more along the lines of a more traditional ultra-lightweight manual chair, but with 'intelligent' powered wheels that work in three ways:

really

The major benefit of this system would be that my powered chair would only take up the same space as a normal wheelchair including being easily foldable for transport. I also like the idea that if the chair runs out of battery, I won't be stranded wherever I stopped - I can just self-propel myself to the nearest place where it's safe to sit around, and call a regular taxi.

Also it will look much nicer.

He's going to write up his report, Access to Work will approve it or not, and then I can have some test-drives. I'm very excited.

Still on cloud 9

2010-03-01T14:03:00.004Z

I rather suspect that, no matter what happens in my life, I'm not going to trump my last post for a while yet. Even the business start-up, while consuming a fair chunk of my time, somehow doesn't seem quite as significant at the moment. A really big thank you to everyone who left a comment or phoned or emailed to congratulate us. The whole thing has been like a dream.

Now, of course, I have the new challenge of organising a wedding.

I've made a start on the research and found that it is possible to get legally wed for the grand total of £103.50 and two half-hour appointments a couple of months apart. This consists of £30 each in fees at the first appointment when we give notice of our intention to marry, and then second appointment and the rest of the cash covers the basic civil ceremony at the Registry Office (Mon-Fri only, maximum of 8 guests) and a copy of the Marriage Certificate.

From there it scales up, sometimes very rapidly. So far the biggest single number I've seen has been somewhere in excess of £5,000, although in fairness that was at a smallish hotel where they reserve the entire premises for the day, night, and morning after, including all the bedrooms, for you and your guests.

I like the idea of having it all in one place, no chances for anyone or anything to get lost or overlooked betwixt ceremony and reception, so I've asked every "approved premises" in my district to send me (a) their wedding brochure and (b) their accessibility policy. Unsurprisingly, only one venue has been able to respond with an actual proper access policy document detailing what is and is not in place. Others, when pressed for a response ("Thank you for sending me yet another copy of your wedding brochure. However before I can get excited about menus, I need to know whether I can actually get into the building...") say things like "there's a ramp kept at reception" as if that answers every possible accessibility question there is.

Even the places that I have visited for other reasons and know to be quite delightfully accessible, don't appear to have an access policy. It's frustrating, not only having to ask, but having so much difficulty getting a straight answer. Still, I'm gradually getting some options together.

I have some very definite ideas about the timetable and the food and drink. I have some less definite ideas about attendants (a decision likely to be made on who is close and sensible enough to offer support, rather than on family ties or a popularity contest) and guest list. Oh, that reminds me, if you are fairly certain you should have an invite, you should probably email me, because so far I'm not even sure I've remembered all of the family members let alone all the friends.

Things I have not even begun to properly think about yet: rings (yes), clothes (not a meringue), hair (up), makeup (photo-proof yet not orange), flowers (no idea), table decorations (even less idea), photos (Steven, you are NOT spending our wedding night on the post-processing), music, transport, guest accommodation, invitations, and probably a dozen or so other things. I hear there are books for this sort of thing. No idea which ones are worth reading, though. And so it goes round, and round, and round.

Engaged!

2010-02-15T10:05:00.002Z

Potted Summary for people in a rush who can't be bothered with all these words: This weekend, Evilstevie proposed to me. It was very romantic. I said yes.

Extended Version, with pictures**:

It all started a few weeks ago when Steve borrowed my phone and inserted a "Top Sekrit Weekend Away" at a location defined only as "Elsewhere" for the 13th and 14th of February. Nothing too unusual in that, we've had quite a few weekends away somewhere, why not do it for Valentines' Day? It's as good an excuse as any.

As the weekend drew nearer, Steve told me he was trying to figure out where to eat on the Saturday night. What with it being Valentines and all, it would be best to book a table somewhere rather than trusting to luck, but he was worried about showing me restaurant options because it would make our overall destination less of a surprise. So I told him that I thought I could guess that much anyway. I was fairly certain that he had arranged for us to stay at Rhyd Hir*, a lovely guest house run by the parents of a friend. After a moment's silence and a query about whether I'd been copied in on the reservation emails or something, he confirmed that I was correct.

Although this made deciding on a place for dinner that much easier, it did make Steve fret a little over the next few days about how much I had guessed and whether there was a security leak. Meanwhile, I was being so smugly self-satisfied about my skills of deduction concerning our accommodation, that it never occurred to me there might be more to figure out...

Forward to Saturday, and after a fairly lazy morning we got ready to leave. This took its usual pattern of me getting ready and then sitting with a book for a while so that Steve could flit about the place rearranging his camera bag, swapping lenses, hunting down memory cards, and so on. Nothing odd there. By lunchtime we were in the car and on the road, with a plan to grab some lunch on the way and then enjoy a nice, leisurely drive to Wales, diverting our route as usual on the basis of tea-breaks, interesting-looking brown tourism signs, and pretty photo opportunities.

We found the restaurant about two hours before our table reservation, so instead we went for a bit of a cruise around finding somewhere nice to watch the sun go down, which was very romantic regardless of the date. Then it was back to the restaurant where dinner was both delicious and plentiful - so much so that when we arrived at Rhyd Hir, we eagerly accepted Diane and David's kind offer of a cuppa but emphatically refused their offer of a slice of cake or a biscuit. Once we'd both regained the ability to fold in the middle, we made our way up to a nice, warm, comfortable room where a bed about the same size as my old flat was a very welcome sight indeed.

In the morning I woke up to birdsong outside, which is nice at this time of year when 'dawn' more or less coincides with a reasonable clock-time to be waking up. We'd agreed with Diane and David that we would be down for breakfast at about 9am, but this was another advantage to the small-guest-house not-a-huge-hotel thing - I didn't have to wait for Steve to be up and about and showered and awake so that he could help me traverse miles of corridor in search of a semi-decent cup of tea. I could let him get on with his shower in peace while I took myself downstairs and was rewarded with an actual pot of tea, and indeed a sofa to sit on while I drank it. This was a good thing because it meant I was properly awake to face Breakfast, a meal which deserved full attention and a capital letter. I almost regretted having cleared my plate at dinner the night before. I was utterly baffled by Steve's decision to only have porridge.

After breakfast, and in his role as "father of a friend" rather than "host", David took us for a bit of a tour around the local area, including some spots where Steve could get some nice pictures. Lots of it was places where we wouldn't otherwise have gone - in some parts of rural Wales it can be hard to tell what's a road leading to somewhere and what's someone's three-mile-long private driveway.

David took us back to Rhyd Hir, and then we picked up our bags, said our goodbyes, and set off for Lake Vyrnwy. At one point, we stopped at a viewing area with a gorgeous aspect on the lake. As Steve fiddled with his camera gear, I pulled out my phone and wondered out loud whether it was worth turning it on to see if there was a signal from this vantage point. I really should have noticed the panic with which Steve told me there wasn't and started getting back into the car saying he'd get better shots from somewhere else.

The 'somewhere else' we ended up was a place we'd been to before - still part of Lake Vyrnwy, but rather more secluded. There's a pretty waterfall, a stream, a nice grassy area with wooden picnic benches, and if you know the road (track) is there and where it goes, you can drive right up to it. Steve had told me that he wanted to try and get a nice picture of the two of us there.

So here's the nice picture of the two of us, complete with hillside, waterfall, stream and cuddle. The camera is on a tripod about two metres away from us. The car is about five metres beyond that. There is a remote control in Steve's left hand (away from the camera) which he is using to operate the shutter. I have happily stood there for a couple of minutes in my role as a marker while he takes test shots, scuttles back and forth making adjustments and so on... nothing unusual is happening. Happy with his camera setup, he keeps whispering jokes and sweet nothings to make me smile and every so often he clicks the remote to take a picture. It's all very romantic and lovely and, although I'm starting to get really tired, I'm having a great time and am really pleased that we've had such a fantastic and relaxing weekend.

Then Steve drops to one knee and asks me to marry him. Not believing him to be serious, I basically tell him not to be silly, the weekend has been fabulous and he doesn't have to start proposing in order to make it better.

Steve assures me he is serious, it's not a spur of the moment thing, he's not just trying to make me happy in the immediate sense, and that he has a ring to prove it. If you zoom in on this one, you see me gaping in shock and turning a funny colour, and him looking both smug and relieved that I hadn't guessed all of his surprises...

Predictably I've lost concentration on standing as I am slightly overwhelmed. At least now we both have wet knees. Steve gently reminds me that it is traditional for me to give him a yes-or-no answer. It's a yes.

As the good old Welsh drizzle picks up, we whisk ourselves and the camera back into the car. After a lot of giggling and deep breaths, Steve changes lenses for a shot of the ring in place. We find our way back to the main road and from there to the Lakeview Tearooms for a well-earned cuppa and something to eat - the appetite which had deserted Steve at breakfast has for some reason come back with a vengeance.

As we drive back to civilisation, Steve also explains to me why he'd been so twitchy about my phone. Knowing that we would be out of signal, he'd set up his server to upload this photograph, and tweet it with the words "fingers crossed @batsgirl says yes..." at lunchtime, so that when we got back into signal (after the proposal) our twitterfriends would have begun to respond and it would be all squeaky and yay. But in his increasing pre-proposal anxiety, he started worrying that the tweet might have gone through early, and I might see it before he'd actually asked the question and he really didn't want to inadvertently propose via twitter.

Knitters will notice that the ring has a bezel setting rather than a prong setting, so that I don't have to worry about it snagging on anything. Apparently Steve had done his research and decided on this before he set out to buy, but had a hard time explaining to the various jewellers that yes, prong settings are very pretty, and very traditional, but he wanted to get me something I could wear every day rather than something to store in my jewellery box.

I'm still getting my head around it, and we haven't set a date yet - we've got as far as "probably summertime" and "probably not this year". We're still too busy giggling to have a sensible discussion about practicalities.

*Access note: Rhyd Hir isn't wheelchair-accessible and the bedrooms are upstairs. But it's not much bigger than a large-ish family home and there's parking right by the door. So if, like me, you can manage indoor-wobbling, it's not a big challenge - plus, there's no epic trek along miles of corridor to find anything.

**All pictures are used with permission, copyright Evilstevie, all rights reserved. Click on the pictures to see the flickr pages for each photo, complete with notes.

Make Her Stop

2010-02-08T15:25:00.003Z

Scrolling through an otherwise innocuous twitter feed this afternoon, when up popped a tweet from Disability Now about the latest antics of Heather Mills.

Now, before continuing, it's only fair to point out that, generally, the online disability community regard Ms Mills as a bit of an embarrassment. Her grasp of disability politics is only marginally superior to that which you might expect of a concussed duckling. The major difference being that the duckling isn't trying to market herself as a disability spokesperson.

Usually it's easy enough to ignore her in much the same way as you might ignore a toddler who is acting up just to get some attention. But then every so often, she ups the ante enough to make me reel in shock that a person can be so stupid.

Yup, Heather says she is making a show where non-disabled celebrities pretend to be disabled so they can, in her words, "see what it's like to live with a disability." Worse, she then goes on to equate this with wheelchair use. All together now:

A Wheelchair Is Not A Disability.
A wheelchair is a piece of equipment you might use if you have any one (or more) of a thousand conditions which involve impaired mobility. Disability is what happens when, despite having appropriate equipment such as a wheelchair, you are still faced with more barriers to your day to day life than one person should have to deal with.

By voluntarily using a wheelchair for a week, you learn what it's like to use a wheelchair for a week, safe and certain that it's only for a week, and that if there was an emergency - or if you simply got bored of playing the game - you could just stand up and walk away.

You don't lose your job in a week. You don't lose contact with your friends in a week. You don't spend months on an NHS waiting list in a week. You don't have to try and co-ordinate moving house in a week. On the other side of the coin, you don't develop your upper body strength very much in a week. You don't become part of a community in a week, or learn the myriad tips and tricks for wheelie life.

In short, there is very little to be gained or lost through playing at "Cripples" for a week. At least, until Heather gets involved...

"We would also get a chef like Gordon Ramsay, blindfold him, and put him in the kitchen for a week."

Leaving aside what Ramsay himself might have to say about it if she tried such a thing - that's just dangerous. If you were to suddenly lose your sight, you would be rushed to hospital. You would be there for a while so that they could attempt to restore your sight, during which time you would slowly get used to the disorientation and to doing certain things by touch. If they could not restore your sight, you would (or at least, should) not be discharged until you've been assessed on how you will manage your basic needs at home, whether there is someone to help you manage, and referred to Social Services and an occupational therapist. You don't get dumped into the middle of a kitchen full of gas burners and sharp knives and told to get on with it. That's a reality-tv experience and has nothing to do with learning about disability.

A small glimmer of hope. The article tells us that "Although she said that the programme is in production, Mills did not reveal its transmission date or which broadcaster had commissioned it." So there is a chance that she's spouting pure, unadulterated rubbish. It's sad that this is the best-case scenario.

Definition of Relief

2010-02-06T11:09:00.002Z

Regular readers will be aware that I've been waiting for the results of my DLA renewal. To recap, that's the disability benefit that is received regardless of work or income because it is supposed to help cover some of the essential disability-related additional expenses like equipment and transport.

I've been very anxious about this. Partly because of the circus that was my last renewal and partly because my existing award was due to expire at the end of this month, and I did not need my first few months of business to be dogged by personal financial struggles as well.

So this morning, when I heard the post land on the doormat, I wobbled out to the hallway, saw the unmistakable DWP Brown Envelope, reached for it, fell over, and was ripping it open almost before I'd hit the floor...

I have an indefinite award, at the same level I've had for the last two years.

In DWP-speak, indefinite is the word they use because the word permanent doesn't allow for people recovering, and the leaps and bounds of medical science can be unpredictable.

If I get better, then I must let them know and they will reduce the award.

If I get worse, then I must let them know and they might increase the award (or they might decrease it, because who knows where the political goalposts will be?).

If someone has too much time on their hands, they might decide to review my claim at any point just for squits and giggles. The government retain the right to put me under intense covert surveillance (google "Operation Ramesses" (sic)) and generally treat me like a criminal whenever they feel like it. That's par for the course of any kind of claim for assistance.

But it means they acknowledge that I've been in the same condition for long enough that I'm really not likely to change, and that there is little point putting me through the expensive bi-annual mill of renewals and medical assessments and appeals and suchlike. The level of assistance I receive can now be considered as permanent as my condition.

I'm shaking like a leaf. I've got the letter folded open here on my desk so I can keep looking at it to check I haven't mis-read.

If I was a more spiritual person than I am, I might believe this was some sort of reward for having finally taken the plunge yesterday and registered as self-employed. Which was going to be the topic of today's blogpost, but the DLA thing has kind of overwhelmed it.

Getting on with 2010

2010-02-04T15:48:00.002Z

Life has been (mostly) nicely full since my last post.

The biggest nice thing was that Steve and I went on a little weekend jaunt to the ~~top left~~ north-west corner of Wales. There wasn't a special reason beyond "getting out" and in many ways I think that made it even more enjoyable. We were supposed to have another friend with us, but unfortunately he had to drop out at the last minute... in retrospect that's probably a good thing because I don't think Steve's car was built to hold more than two adults for long journeys.

So we spent Saturday trundling as far as Bangor, where we stopped overnight at a Travelodge, and then on Sunday we picked up a load of leaflets from the foyer to see if there were any particularly appealing attractions. Which there were, but for some unfathomable reason most of them aren't open until Easter. Tsk. So we decided to take our trek to the ~~top left~~ north west corner to extremes, and headed over the bridges to Anglesey, and thence to Holy Island.

On the way we stopped in at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and got a couple of postcards, because we couldn't not. The sun was shining and it was a beautiful day, so we then continued on to the bird sanctuary at South Stack. There was wheelie access right up to the clifftop (and probably right off the clifftop if you weren't careful) and it was lovely to be able to sit there watching the sun, sea, waves, lighthouse, birds, boats, and also looking out for our own noses falling off with frostbite because it was COLD! Still, that's only to be expected for January.

Steve tucked me back into the car to defrost while he ran about taking more photos. I got out my phone to amuse myself and was a little disturbed to find a text message from my mobile phone provider welcoming me to Ireland and advising me of the Euro Roaming Charges. I don't know whether to be peeved at the lack of local signal, or be impressed that my phone was getting a signal from over 60 miles away.

The rest of my enjoyment of the beautiful scenery was from inside the car, but it most definitely was beautiful. We found time to stop at Trefriw Woollen Mills which was nice in a "yay! found yarny!" way, but again, most of the features apart from the shop were closed up for the winter.

Poor Steve obviously had sole responsibility for the driving which meant that he was as shattered as I was by the time we got home. A substantial part of last week was spent with me taking it as easy as possible during the day, to make sure that when he crawled in after work in the evening I wouldn't have to ask him to do as much.

Then on Friday, just as we were picking up again, we both came down with the latest illness sweeping around his office! It was a really nasty one with fevers and yuck - one of those ones where you decide you can't cook, order a takeaway, and then it arrives and you just look at it, knowing that you should eat, but unable to bring yourself to actually do it. Happily it was just a two-or-three-days one and we're both feeling a lot better now.

The business stuff is all but ready to go now, thanks to the help of the Prince's Trust. There's still a few chains to be completed, silly things like: I want to pay for my insurance, domain name, etc, from the business account; I'd rather not start charging things to that account until I'm certain that the capital I paid in has cleared; I won't know if it's cleared until I've had a look in the online banking; I can't look at the online banking until I have all my login details. But the bits and bobs are in place. Mainly I just have to man (woman?) the heck up and take the plunge of registering.