Keeping Warm

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

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

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

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

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

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

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

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...

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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!

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

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

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...