That's not a compliment

Written for Blogging Against Disablism Day 2012.



I try to keep my personal and professional identities separate. When people ask me what I do, and they are potential friends rather than potential clients, I tend to grin and rather flippantly tell them that I write blethers for other people's websites. That's not all of what I do, not by a long way, although it's the favourite part of my job – it's interesting, I'm good at it, and I often enjoy it. But let's face facts, the question “what do you do?” rarely means “please describe to me in detail everything you do with your day,” rather it means “tell me something that will fill this conversational gap, and possibly help me to build my mental image of you.” Telling them with a smile that I write blethers for other people's websites is a short, good-humoured and effective way of filling this hole with the image of a woman who spends her day working in an office, at a computer, the image equivalent of a Visa card, acceptable everywhere.

What does that have to do with disablism? Well, it's about where the conversation will go from there.

Often people feel compelled to congratulate me. Good ways of congratulating a person include phrases like “Hey, that's great!”, “it must be so rewarding to have a job you enjoy,” or even “I wish I could do something like that!”

Unfortunately all too frequently I hear something along the lines of “Great! At least you're doing something with your time, not like all those lazy benefit spongers, half of them aren't what I'd call disabled anyway, I mean if you're doing it, why aren't they?” Often this is followed by an anti-welfare rant rounded off with a baseless assertion that “most” disabled people “won't even try,” and a final verbal pat-on-the-head to me for “giving it a go.”

TOP TIP. The way to compliment me is not to disparage the entire minority group to which I belong. Treating my work, where people pay me money for my skills, as nothing more than a time-filler is also insulting. Furthermore, it would be good if you can avoid waving around the negative stereotypes and slurs which have been applied to me and my disabled friends on a regular basis for the last few years, and while we're at it, please don't attack the welfare system which quite literally saved my life by keeping a roof over my head and food on my table for the first couple of years when I got sick.

I'm one of the lucky ones, and I don't want the price of that luck to be ignoramuses trying to use me as a stick to beat down the people who have not been as lucky in similar situations.

Brave vs Stupid

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

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

Take the freaking ibuprofen already.

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

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

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

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

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

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

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

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

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.

Make Her Stop

Scrolling through an otherwise innocuous twitter feed this afternoon, when up popped a tweet from Disability Now about the latest antics of Heather Mills.

Now, before continuing, it's only fair to point out that, generally, the online disability community regard Ms Mills as a bit of an embarrassment. Her grasp of disability politics is only marginally superior to that which you might expect of a concussed duckling. The major difference being that the duckling isn't trying to market herself as a disability spokesperson.

Usually it's easy enough to ignore her in much the same way as you might ignore a toddler who is acting up just to get some attention. But then every so often, she ups the ante enough to make me reel in shock that a person can be so stupid.

Yup, Heather says she is making a show where non-disabled celebrities pretend to be disabled so they can, in her words, "see what it's like to live with a disability." Worse, she then goes on to equate this with wheelchair use. All together now:

A Wheelchair Is Not A Disability.
A wheelchair is a piece of equipment you might use if you have any one (or more) of a thousand conditions which involve impaired mobility. Disability is what happens when, despite having appropriate equipment such as a wheelchair, you are still faced with more barriers to your day to day life than one person should have to deal with.

By voluntarily using a wheelchair for a week, you learn what it's like to use a wheelchair for a week, safe and certain that it's only for a week, and that if there was an emergency - or if you simply got bored of playing the game - you could just stand up and walk away.

You don't lose your job in a week. You don't lose contact with your friends in a week. You don't spend months on an NHS waiting list in a week. You don't have to try and co-ordinate moving house in a week. On the other side of the coin, you don't develop your upper body strength very much in a week. You don't become part of a community in a week, or learn the myriad tips and tricks for wheelie life.

In short, there is very little to be gained or lost through playing at "Cripples" for a week. At least, until Heather gets involved...

"We would also get a chef like Gordon Ramsay, blindfold him, and put him in the kitchen for a week."

Leaving aside what Ramsay himself might have to say about it if she tried such a thing - that's just dangerous. If you were to suddenly lose your sight, you would be rushed to hospital. You would be there for a while so that they could attempt to restore your sight, during which time you would slowly get used to the disorientation and to doing certain things by touch. If they could not restore your sight, you would (or at least, should) not be discharged until you've been assessed on how you will manage your basic needs at home, whether there is someone to help you manage, and referred to Social Services and an occupational therapist. You don't get dumped into the middle of a kitchen full of gas burners and sharp knives and told to get on with it. That's a reality-tv experience and has nothing to do with learning about disability.

A small glimmer of hope. The article tells us that "Although she said that the programme is in production, Mills did not reveal its transmission date or which broadcaster had commissioned it." So there is a chance that she's spouting pure, unadulterated rubbish. It's sad that this is the best-case scenario.

Well, that answers that question.

So much for wondering how I'm going to fill the hour or so per day that I've spent doing my DLA forms for the last few weeks.

This morning, as I was sat on the staircase putting my coat on in order to go to the Post Office and send my Enormous Wodge Of Paperwork, the postie arrived and shoved a brown envelope through my letterbox.

It's from HM Revenue and Customs, Tax Credit Office.

Click here for the previous episode.

The short version is:

2005 - 2006: I owe them £500, which I would happily pay, except I do not have it due to becoming ill, loss of job, going onto benefit, etc. They defer payment. They ask for this £500 every three months or so. I still do not have it. They defer payment. And again. And again.

At the end of 2006, they send me letters saying I don't owe them anything, £0.00, zero balance. Woohoo! I don't hear from them for the entirety of 2007. Huzzah! I figure my debt must have expired.

2008: they demand payment of £500, immediately, or else legal action. WTF? I ring them up. They send me a form for disputing overpayments. I write to them explaining that I don't deny that I did owe them £500, once, but that in 2006 they wrote to me telling me I don't owe it any more, and I think it's a bit nasty of them to suddenly change their minds and threaten me with legal action.

Today's letter was basically an explanation of how I came to owe them £500 in the first place.

I already knew that bit. I'm not disputing that bit. I'm disputing whether it's okay for them to go "You don't owe us any money any more. *pause* Whoops! actually, you DO owe us money, after all."

No mention is made of the letters (which I sent them copies of) that told me I owe nothing.

It just says that I owe them the money, and, direct quote here, "You cannot appeal against the decision to recover your overpayment."

So tomorrow, I must phone them and explain in great detail about how my income does not cover my essential living expenses (rent, electricity, water). I suspect that we will then enter the deferral cycle again.

Meanwhile, I enter into a written-correspondence argument with the "Customer Service and Support Group Officer" who was unlucky enough to sign this latest letter to me. Who thinks I should finish my letter with a demand for a copy of their complaints procedure?

Let It Snow

... but, if it's going to snow, could it at least have the courtesy to do it properly?

Like many other people with chronic illnesses, my condition is affected by the weather. Snow in particular poses a problem, the combination of low pressure and low temperature giving me a double whammy of Bad.

So when we had an hour or so of snowfall in the late afternoon/early evening of Friday, I was practically a human barometer. I started work feeling my normal self, but at about 4pm I started feeling rotten and shortly after 5pm I was curled up on the floor flinching from the light and trying not to be sick.

Thing is. I would never go so far as to wish it didn't snow. Snow is fun for lots of people and it looks pretty, too. Even if you don't want to go out in it at all, there's a lot of satisfaction to be had in curling up on the sofa with a thick jumper, a hot water bottle and a steaming mug of hot chocolate, gazing out of the window and thinking "ooh, I'm glad I'm not out in that."

That's not what we got on Friday though. We just got big fluffy flakes that melted almost as soon as they'd landed. What's the point in that? Proper snow or none at all, that's what I say. None of these half-measures.

In other news, it's been hard to miss the story about the investment banker David Freud who spent three weeks examining the UK welfare system and published a report which was "highly influential" on new reforms to the system. These reforms have been outlined by James Purnell, a man who has been Work and Pensions secretary for all of a week. Perhaps the reforms are more substantially the work of the previous Work and Pensions secretary... one Mr Peter Hain, who left the position without giving notice, and only did the job part-time anyway, between his other occupations of being the Welsh secretary, and trying to persuade everyone that his failure to disclose donations (for his failed attempt to become deputy leader of the Labour Party) WAS due to incompetence, rather than wilful fraud.

Bearing those track-records in mind, it's hardly surprising that Mr Freud's report contains a disturbing amount of inaccurate information, as well as a certain amount of the 'I don't believe it so it can't possibly be true' philosophy (why is it so unthinkable that at any given point, 500,000 (about 2%) of the 25 million people under 35 in this country are incapacitated in some way?).

I don't want to bang on about this one today - most of my opinion on the demonisation of Incapacity Benefit claimants in the media and their use as a political football can be found in this post - but really, this guy is incredible. Let's just take one example:

"He told the Daily Telegraph it was "ludicrous" medical checks were carried out by a claimant's own GP," because "they're frightened of legal action."

Well, yes, it would be, if this were the case, which it isn't.

A claimant's own GP IS required to fill out a report on a claimant, on the basis that they are likely to be at the centre of a claimant's medical treatment. However, reports are also requested from: the claimant themselves; other medical professionals treating the claimant; and from the "person who knows the claimant best" which could be a carer or friend or relative. An independent medical professional employed by the DWP decides if all the various reports support each other, and quite often, the claimant is then required to travel to another town in order to attend an appointment with an independent DWP doctor who makes yet another report. The whole lot then passes to a panel of bureaucrats who make a decision on whether benefit should be awarded. I cannot spot anywhere in this process which allows for legal action to be taken against the GP unless they were to knowingly provide inaccurate medical information.

If the esteemed *anker has ANY evidence to back up his belief that there are 185,000 claimants working illegally, and a further 1.5 million claiming fraudulently, then he owes it to all of us to pass that information on to the National Benefit Fraud Hotline, either online or by calling 0800 854 440.

Simply making life even more difficult for people trying to cope with a long-term illness is not going to help anybody.

PS, I'm feeling physically rubbish, but in myself, I've perked up a lot in the last couple of days. Not quite as nauseatingly happy as I was a couple of weeks ago, but I'm working on it.

Amazing.

I started work on November 13th. I have been a productive little bunny since then. Not only have I worked four hours every weekday, but I've also worked hard to disentangle myself from the benefit system. Here's what I've done so far:

Round One: On the day I was offered the job, I phoned the local Jobcentre to tell the Rubbish DEA, and the regional DWP office to tell the Incapacity Benefit people. They told me to tell them in writing, so I typed up a very nice letter. In all these communications, I gave my name, National Insurance Number (NINo) (note for foreign readers: this is like a social security number, and is used to identify you on all government, welfare and taxation systems), address and so on, and explained as clearly as I possibly could, that I wished to cease my Incapacity Benefit claim from November 13th as I had been offered a job. I told them how many hours I would be doing and how much I would get paid.

Round Two: During my first week of work, trying to arrange transport, I spent some time on the phone with the local council. Again, I fully identified myself including NINo to several people, and explained about having been on Incapacity Benefit, and having recently started work.

Round Three: Having got hold of Access To Work, who are part of the DWP/Jobcentre, I gave all my details again, over the phone and in writing on their forms, including NINo, date I started work, rate of pay, etc. I was approved for assistance with transport to and from work.

Round Four: The Useless DEA had referred me to Remploy back in October, which would have been great if the sole representative of Remploy in this area hadn't been off sick himself. Well, he phoned me back last week and told me that he could get me some extra money - £150 tax-free as an incentive/bonus for anyone who gets off Incapacity Benefit and into work. Fantastic, thought I, and once again gave my full ID and circumstances, over the phone, and again on a form with DWP all over it.

Plus, of course, I've blogged every step of the way. I haven't advertised my identity too much on here but it wouldn't be too difficult for anyone who put their mind to it, to figure out who I am.

Which is all a rather long-winded way of saying, I haven't exactly tried to conceal the fact of my working from anyone, least of all the DWP. No one can accuse me of attempted fraud, or working on the quiet, or trying to hide the fact that I got a job.

This makes it all the more concerning that, since my start-date of 13th November, two lots of Incapacity Benefit plus of course that famous £10 Christmas Bonus have been paid into my bank account.

And that means that my cold-ridden bunged-up self gets to spend tomorrow morning on the phone to the DWP, AGAIN. Joy.

EDIT 11/12/07
Update:
Phoned the DWP Muppet Show. Gave details. Explained situation as a timeline. May have worried the call-taker by making it clear that I keep notes. The overpayment of four weeks of long-term-rate Incapacity Benefit is a sum that can't just be written off as a rounding error (well, in a national sense it could, but) and so there will be an investigation. A decision-maker will determine whether I have to pay the money back (probably) or how much of it I have to pay back, and also whose fault it was.

STEVE: Surely they'll just say it was your fault, you forgot to tell the post-boy in the foreign embassy or something.

A reasonable assumption, but I have a reason to doubt it. (my emphasis)

Dear Mary,
I am a Disability Employment Adviser with a responsibility to support people back to work who have a disability.
Blah blah blah appointment in October,
Yours sincerely,
The Useless DEA

Which I'm taking to mean that, if there's anyone I didn't know I should tell, it's her fault. She is my named liason with the Jobcentre during the Back to Work effort. She is claiming me as a KPI, I was on her caseload, then I entered employment for more than 16 hours a week. She has a self-declared responsibility to support me.

I'll probably have to pay back the money and I'm not complaining about that at all, as it's money I'm not entitled to and didn't ask for. But damned if I'll take responsibility for ANY of their screwups.

Still working

It's been more than a week now since I started work. It's going well. I am getting very sore and tired, true, but the work gets easier to do as I get more used to it. I've learned the job pretty well and am hardly getting brainflustered at all any more. Co-workers continue to be lovely, and I'm now 'officially' an employee rather than the casual see-how-it-goes thing we started out with.

Things at home are settling out nicely as well. The Roomba (or 'Bloop' as he is coming to be affectionately known) is doing well - not only does he clean the carpets, but I think he also makes us a bit more inclined to keep the place tidy, as roombas aren't really compatible with floors full of trailing wires, shoelaces, knitting, paperwork and whatnot. The shopping delivery from Sainsburys the other day was great, everything well in-date and only a couple of substitutions which I was perfectly happy with (eg "we didn't have the pack of two pain au chocolat that you ordered. So we're substituting a pack of four," OH NOES). Steve has been making more of an effort to do stuff around the house, especially the washing up, which has been an enormous help. Of course when he goes back to work, I'm going to have to pick up a bit more of that, but I'm not panicked about it. The only bit that worries me is the kicking him out of bed in the mornings, which is not a task for the easily discouraged. Steve is reading this, but I honestly think he would have to be among the first to admit that first thing in the morning he Does Not Want To Know about the world outside the duvet.

Knitting is seriously slowed at the moment. I did manage to go to knitting group on Tuesday for about an hour after work, but found myself regretting it a bit. I think it might be better to do what Steve suggested - finish work at 5.30, come home, have a nap, and then go out again to knitting at maybe 7.30 if I'm up to it. I turned down this suggestion last week on the basis that it seemed a bit silly for Steve to have to drive into town and back three times in an evening (1 pick up from work, 2 drop off at knitting, 3 pick up from knitting) but it might be the only realistic way to do it.

As you will have noticed, we're still talking about Steve taking me to and from work. On Friday (the 16th) we went to the council offices and got my ID and Blue Badge and whatnot photocopied, and the plan then was that the council would refer me to Community Transport, and then Community Transport would send me a form to apply to them, and once they had that form back, we could see about transport. However, I haven't had the form yet.

Today, I got through to Access to Work on the phone. Someone answered, took my name and number and a brief run-down of what I wanted, and said he'd arrange for an advisor to call me back.

A few minutes later, Yay, points for speedy actualisation of promises, T, the advisor called me back to tell me that he was going to go through a form with me and it would take 15 or 20 minutes. OK, so far so good, it was mostly stuff like name, address, NINo, do you claim this, do you claim that, what help do you want... great.

An interesting question was "do you claim Incapacity Benefit?" to which my answer, which should have been yes or no, was "not since I've started the job. However, when I first tried to call you, between getting offered the job and starting, then yes, I did get Incapacity Benefit. But your phones were down." Surprisingly enough there wasn't a box for that. T couldn't backdate my AtW claim, so he had to put "no" because at the time of our conversation, I was no longer on benefit. But he did ask what number I had been trying, and apparently "that number" was down for about six weeks. Which implies that they have a second number, which the DEA didn't give me, with which I might have got hold of them sooner. Do we think I should make a complaint about this DEA yet?

Fifteen minutes later, the questions were all answered, so now what? Well, T will post the form to me today. If it isn't with me by Monday, I should call them back. When I get the form, I must check it, sign it, date it, and send it back to them. Once they have the signed form back, then another advisor, a notch up from T, will look at the form and phone me to discuss things in more detail.

In the mean time, the DWP and the council and everyone else official are happy for me to be attempting to get by on £20 a week because of the cost of transport to and from work soaking up most of my earnings - it really is just exceptional luck for me that I have someone who can give me financial support and transport for the short-term immediate future. Dear Peter Hain, THIS is why disabled people who are technically capable of doing some jobs get stuck on Incapacity Benefit...

Transport to work.

Fun and games trying to arrange transport to and from work.

I can't drive, due to the effects of my condition. It would be unsafe for me and everyone on the roads and pavements anywhere I was driving.

I can't walk any significant distance. Particularly, I can't walk to useful places like my workplace in the town centre...

...or the nearest bus stop even, so I can't use the buses either. Public transport is cut off for me.

I can use a mobility scooter. What I can't do is safely use a mobility scooter in the dark/cold/wet for the 45 minutes it would take to trundle from work to home after having done four hours work.

I can use taxis. Taxi fare from this house to the town centre is about £7. Taxi fare to and from would therefore be about £14. I am on minimum wage. My four-hour day earns me £20-odd quid a day, after tax and NI that will be more like £18 or £19 a day - call it £95 a week. I am prepared to make the effort to do this working thing, but I'm not prepared to throw away 75% of my earnings just on getting there and back, working myself into agonising pain and utter exhaustion for a profit of £20 a week - and neither would you. Especially when the government will give you £80-odd a week to NOT work.

The DEA told me Access To Work would pay for my transport. But I cannot get hold of them.

I *have* got hold of the local community transport people at the council. At last.

Because I have a Blue Badge, I can use community transport, and because I can't use the buses, I can get something-or-other Tokens instead of a bus-pass.

This is where we discover that community transport isn't set up for the idea of disabled people WORKING at all. Apparently all these Tokens mean is that I get 20 trips at a cheap rate of 55p a mile.

ME: Twenty trips?
Council Lady: Yes, and then it's £1.05 a mile.
ME: So given that I work five days a week, that's two weeks transport?
CL: Yes, that's right.
ME: Wow.

Still, it's 3 miles to work, so that's £3.15 per trip, or £6.30 per day, which is still half the taxi rate and leaves me with about £12 or £13 per day profit, or £65 a week. So I'll still be worse off than I was on benefit, but not *quite* so drastically. Okay, Council Lady. How do I get on this scheme?

I have to:
- Go into the council offices that are hidden round the back of wherever.
- Wait about while they photocopy my blue badge and a couple of utility bills.
- Go away hoping desperately that they will be competent.

Then Council Lady will start a referral to the transport scheme, confirming that I am resident in the area and that I am mobility-impaired and therefore need community transport.

Then Community Transport will send me a form, which I have to fill in and send back to them, and THEN I might be able to actually arrange some damn transport. God knows how long this will take. If it wasn't for Steve still being on his study break I would be screwed. If I lived alone, couldn't wangle an occasional lift, needed to really turn a liveable-on profit... this is probably the point at which I would have given up and decided to live on benefit ad infinitum.

Your (and my) tax dollars at work, people.

One hassle after another

The world and his dog is conspiring against me and my hopes for a smooth transition from benefit sponge to Usefully Employed Member Of Society.

You've already heard about the woe of the Interview Trousers, and how by the time they are the right length for me, I will already have been working for two days.

Steve isn't feeling well, so I'm worrying about him on top of everything else.

I'm less than optimistic about my ability to do effective grocery shopping in my first week of work, and have similar reservations about my ability to cook. So, I wanted to get a decent amount of shopping dealt with and out of the way, including a load of easy meals in that if necessary Steve can cook (if it was up to Steve he would live off chilli, pot noodle and biscuits, which on the one hand he enjoys, but on the other hand is not a balanced diet or one that I want to live on). Couldn't go shopping on Friday because Steve wasn't feeling well. Which meant dealing with a Saturday Supermarket Shop.

It would not be outrageous of me to suggest that most people find supermarkets on a Saturday at least a little bit stressful. Imagine, then, that you walk into the supermarket clutching your trolley and realise that the shelves are looking a bit... sparse. In some cases, one might even go so far as to say, "empty".

It seems that the local Sainsburys depot has unexpectedly closed, and that therefore the usual stock replenishment has not been able to take place. So there was precious little food to be had, particularly the fresh stuff. What there was, was hovering on the sell-by date, and not even priced down because it was that or nothing.

It wasn't quite a case of fighting scrums of desperate shoppers for the last pack of bacon, but there was a definite air of frazzlement as people tried to re-plan their week's meals, hunted for alternatives, put the goods they had gathered back on the shelves so that they could go try tescos instead... I confess to feeling a little burst of joy as I picked up the last steak pie, in contrast with the realisation that ALL the pre-prepared potato products were gone and that I would have to do my potatoes the old-fashioned, time and energy-consuming way, starting with peeling the damn things.

Still, got a £5 voucher by way of "sorry we didn't have everything you wanted".

And finally... the Muppet Show that is Jobcentre Plus. Ever since I found out I have a job on Friday, I have been trying to sort things out with them.

First, I contacted the Disability Employment Adviser (DEA) to tell her that I had a job. Her response was:
1) To give me the phone number for Access to Work - along with a warning that AtW's phone lines were down and that I would get a "this number doesn't exist" type message but that it definitely was the right number.
2) To give me an 0845 number for the Incapacity Benefit section so that I could call them and let them know about my job. When I told her that I only have a mobile phone and that as such, 0845 numbers are very expensive for me to call (they're only local rate from regular landlines), her response was "well, that's their number, you'll just have to phone them."
3) To make unsolicited excuses about Remploy and how busy they are and how that is why I got a job before they got back to me, then telling me that I should get in touch with them, and to give me their phone number as well. My experience in the field tells me that this is less for MY benefit and more for THEIR Key Performance Indicators. I suspect reporting a positive number of disabled people getting jobs is central to certain bits of funding for them.

By this point I was wondering if I'd called a DEA or if I'd got confused and dialled some sort of spontaneously number-spewing Directory Enquiries. I have no interest in spending my time and money on phone-chases in order to make other people who I've never met look good on their KPIs.

Which is probably why I came out with something along the lines of "I'm quite impressed that I managed to get myself a suitable job so quickly. It's reassuring to know that I've still got the skills to negotiate disability issues with an employer properly."

To which she responded with something along the lines of "You're nowhere near as disabled as my other clients. It was hardly difficult for you to get a job."

If it had been "you have a better set of skills and experience", or "you're a very motivated person" or even "you have a lot more confidence" I wouldn't have minded so much, but this woman knows absolute jack about 'how disabled' I may or may not be, apart from that I have a diagnosis of ME/CFS and an IB award until 2010 - which you don't exactly get for no reason. That's leaving aside the whole discussion about how disability isn't on a sliding scale anyway. Gaa.

The woman on the other end of the IB helpline told me that I would have to write a letter with the details of my job and send it to them. Well, eventually she said that. First, she said that my details were still being held by the Bury office and that she would have to pull them across to Cannock. I wouldn't mind if I hadn't already asked for that to happen no less than four times in the last two months and each time been told "yep, no problem".

Access to Work's phone lines are indeed down and were still down on Saturday. It's a good thing I told my new boss I needed Monday to deal with the benefits people. It's also a good thing that Steve isn't at work again yet and can give me lifts to and from work. Hopefully I will be able to get hold of them on Monday, and then make a doctor's appointment if necessary and prepare for whatever other hoops they tell me to jump through.

The actual job is rather secondary in all this faff and stress.

Jumping Through The Hoops

Although I still have many hoops to jump through for the Jobcentre, it's all on hold until such time as my medical notes arrive from Lowestoft and I see my new GP.

I swear Waveney District Council must have heard that I was getting a week or so grace from performing for government departments, because they have kindly provided me with more Big Brother tasks.

I was liable for part of the Council Tax on the flat, because while the Jobcentre Incapacity Benefit letters all said "this is the amount the government says you need to live on", the Waveney District Council letters all said "(you must give us money and pay part of your rent yourself because)...your income is more than the amount you need to live on". Which seemed like a bit of a local/national kind of discrepancy to me, but, whatever, I had not got the time, energy, inclination or resources to fight with them over a tenner a week or whatever it was.

Anyway, I made a lump-sum payment to cover the whole year just so that they would leave me alone, which worked beautifully. Unfortunately it meant that, as I moved out before the end of the financial year, they ended up owing me money.

Currently we're on letter number 3. Number 1 said "we will stop your payment." Number 2, the other day, said "we have stopped your payment". Number 3, which arrived in the same post as Number 2, was the one which made me do a double-take. It amounts to "we owe you about £65. We're not sure if you actually want that money. So if you do want it, you can write to us and ask nicely for it."

I am trying, I swear, I am trying to write a concise, polite letter to the effect of "actually yes, I would rather like you to pay me the money you owe me, if you could be so kind" but so far I haven't come up with anything sendable. I fear that a request for payment that is too snarky or sarcastic or critical, may well end up in my file being 'lost' or something. They're that kind of organisation. So I'm blogging my frustration instead.

Your suggestions, sensible or snarky, are more than welcome.

(In other news, there are now only 728 people ahead of me in the queue to get on Ravelry. I'm getting quite excited.)

Yet more moving faff

...but first, a knitting update. I have embarked on my first adult-sized jumper. The yarn (Colinette "Cadenza" 100% merino wool in "slate") is gorgeous, the colours are beautiful. It's mostly blue tones, but with patches of rainbows. Meanwhile, Left Mitt v1.0 has been tried on, the only adjustment needed is for the fingers-bit to be a little longer. So I've done that, and have nearly completed the matching Right Mitt too. After that, will be another identical pair for when this pair are in the wash (or lost), and a similar but smaller pair for my mum. Basically I'm reckoning that at any given time for the rest of the year I will have one project on regular needles (the jumper) and one on DPNs (the mitts).

Now. Today being the first working day after my Official Move Date, a certain number of things had to be done. I had to go to my bank and my building society to update my details (understandably enough, these institutions won't let you do that over the phone), and I wanted to go to the Jobcentre in order to check that everything was as it should be with my benefit (I still get the same amount of Incapacity Benefit but it has to come from a different regional pot) and find out about help available for disabled jobseekers in the area.

The mission started off quite well, really. Steve drove us into town, and then, fortified with tea/coffee and scones, we went to my Building Society, which I would be naming here to praise their good customer service to all and sundry, except I'm not sure how sensible it would be to put any of my financial details on the internet, so let's just call them my Building Society and I promise to email them direct.

Stepped up to the reception desk, queued for about a minute while the person ahead of us was dealt with, then was greeted by a friendly, smiling member of staff, the conversation went thus:

HER: Can I help you?
ME: Yes, I've just moved house and I'd like to update my address details for my account.
HER: (fishing sheet of paper on a clipboard out of a drawer) No problem, have you filled in one of these change of address forms yet?
ME: Um, no.
HER: Is the account a joint one, or just yours?
ME: Just me.
HER: Then you only need this one form. Would you like to fill it in now, or take it away and come back another time?
ME: (taking form and noting it is a single side of A4) Um, now is fine, we're not in a rush.
HER: Okay, here's a pen, there's seats round here, oh, or there's a desk over there if you'd like to use it, just bring me the form once you're done, and I'll be here if you need anything.
ME: Marvellous, thank you.

Sat at the desk, filled out the not-too-complicated form, queued again for a minute or so, gave form and pen back to smiling lady who thanked me, assured me it would get sorted out today, and we left.

At that point I felt wonderfully positive. So I kissed Steve and sent him off to the local park to take photos of ducks while I attended to my Bank and dropped in at the Jobcentre.

Ha.

At my Bank, I was waiting for what seemed like ages (by the clock, probably not much over five minutes, but when standing is agony, your sense of time gets skewed) while a woman about my age grumpily dealt with the two or three customers ahead of me in the queue for reception, including going and having a rather unprofessional argument with one of the tellers behind the cashier windows. Eventually it was my turn, and she glanced up at me and opened proceedings with an abrupt "Yes?"

ME: Um, hi, yes, I've just moved house and I need to update my address details.
HER: Have you got ID?
ME: Yes, (opens foolscap folder) I wasn't sure what you'd need so I've brought all the ID I've got.
HER: Driver's licence or passport.
ME: I don't have either of those. (leafing through folder) I've got a full birth certificate, and my marriage and divorce certificates, several recent utility bills in my name, a bank statement, National Insurance card, P60...
HER: We only take driver's licence or passport.
ME: I can't drive and I haven't travelled abroad in years. To the best of my knowledge, neither of these things preclude me from having a bank account, or an address.

At this point she made a noise I'm more accustomed to hearing from Sister Dearest when she's in a moodypants. However, she finally deigned to poke my assorted paperwork and put my details into her computer.

Don't get me wrong, I'm hardly sweetness and light 24/7, but then, I don't work in customer service.

Onwards to the Jobcentre, where no less than three advisors were standing about by reception - fair enough as there was no queue. I started with "I've just moved to the area and I want to double-check my incapacity benefit has moved with me," but before I'd finished, one of the advisors had moved to a phone kiosk on the wall, picked up the phone, and was impatiently holding it out to me. Confused, I took it. It was the all too familiar sound of the standard Jobcentre helpline, inviting me to press 1 for income support, or 2 for Jobseekers Allowance... I pressed 3 for Incapacity Benefit and a couple of minutes later, a friendly voice at the end of the phone was making sure that the "push", as they term it, was happening. I checked and re-checked that this meant there is nothing else I need to do and the friendly voice confirmed that yes, everything is fine, there is nothing else I need to do. Grand. I thanked her and hung up.

Back to the Three Stooges Advisors, interrupting their chat to ask about local provision for helping disabled people to access work, training, services, etc. The person who wordlessly shoved the phone at me before, stomped to the wall of leaflets and wordlessly shoved the generic national leaflet for Access To Work at me. By now I was quite cheesed off, so I flipped open the leaflet and said "you see here where it suggests that I contact my nearest Jobcentre? That is what I am doing. I have come here, to my nearest Jobcentre, to ask about what specific help there is available in this specific town, yes? I've already read this leaflet, it's in every other Jobcentre in the country and online too."

I immediately felt bad about being so snappy, but Wordless Guy didn't seem to give a monkeys and one of his colleagues had decided to join us. As Wordless Guy wandered off, Colleague asked if I'd like to speak to the Incapacity Benefit advisor, C, who might know more about the sort of services I was after. He ushered me to a seat and said he'd find out if C was available now or if I needed an appointment. A moment later he was back to tell me that C would be with me shortly, but that's another blogpost.

Moron Moment

Yesterday, I made a very very stupid sock-related cock-up.

Flushed with success after having negotiated my way through the heel shaping, I picked up the stitches from the sides of the heel flap with no problem at all and forged ahead with the shaping of the instep.

And then I ballsed it up. And the mistake I made was so simple, so stupid, so... so bloody typical of me, that I'm still angry now.

The first row I was supposed to do was kind of complicated (by "I am Mary knitting in the round for the first time" standards). If I'd made a mistake on this row, I would not have minded. It would have been upsetting but not unexpected. So I paid as much attention as I could and very carefully dealt with the slips and decreases and stitch markers and so on. I counted like I was auditioning for Sesame Street and felt very pleased with myself. "Repeat these rows until X stitches remain" said my pattern. Marvellous, I thought, and steamed through another eight of these complicated rows before my brain finally realised what it was saying.

"Repeat these rows until X stitches remain"

"these rows"

Rows plural. I've been doing the same row, over and over again. I examined the pattern again, and nestling underneath all the gibber gibber ssk2tog hokey cokey and turn around, was the innocuous line:

"2nd Round: Knit."

Somehow, my enthusiastic brain had skipped this little instruction.

In non-knitter terms:
I should have gone complicated, plain, complicated, plain, complicated, plain, complicated, plain, etc.
Instead I went complicated, complicated, complicated, complicated, complicated, complicated, complicated, complica - oh BUGGER.

So I had to do this. Right back to where I was the night before.

Happily, I've picked up okay and am now back on the complicated/plain bit, having used up almost all of the wiggly wool. There's also been a bit more progress on the jumper for Littlun (which I would photograph, but it's dark blue stocking stitch, so there doesn't seem much point). I've just about finished the first ball of yarn, there's six more to go in total. So he may well get his jumper while he still fits it and in time for the cold weather.

Today Pip and I are taking Littlun for a haircut. Last time we did this, it was spur of the moment - we'd just had lunch and saw a hairdressers with no queue. Littlun was tired and had been sitting still for his lunch and wasn't sure what was going on, except he was sure he didn't like what was going on, and so he screamed himself sick - yep, screamed until he actually vomited all over the cape and the chair and the floor.

This time, we have a plan. We're going in the morning - so Littlun will be awake, happier, and we can bribe him with foods, rather than full, unbribable, and wanting his nap. Pip is making sure there's assorted treats, toys, and a drink in the bag, and we may try having the hairdresser cut Pip's hair first with Littlun on his lap, to show him it's not scary and Daddy likes it and what have you. Here's hoping.

More Fun With Benefits

Ladies and gentlemen, may I introduce a new contender in the Great Benefits Cock-Up... Waveney District Council!

Regular readers may recall that a couple of weeks ago I was feeling quite relieved that I had finished dealing with the benefits stuff and that "all" I had to do was contact the council, who manage the housing benefit, to change the designation on my file from "Disabled - in receipt of DLA" to "Disabled - in receipt of long-term Incapacity Benefit". After taking soundings from blog commenters, family, and real-world friends, I went for the double safety of writing a clear letter explaining the situation, but taking it into the offices in person and getting a receipt as well.

A letter arrived from Waveney District Council today, a surprise in itself as today is not a Saturday. It informed me that due to my change in circumstances, my housing benefit would be suspended as of the first week in August. It asked me to provide additional information (such as bank statements) and to please fill out the enclosed form and return it within fourteen days.

First Cock-Up: I thoroughly searched the envelope and both sides of the letter and found nothing at all resembling the alleged "enclosed form".

Luckily my stepdad was able to offer me a lift to the Council offices to try and sort things out. I got signed in at reception and was given a number. Then I sat down in the waiting area with my knitting, which incidentally is a great ice-breaker in a setting like that.

Second Cock-Up: They forgot me. I sat quietly and knitted for about an hour before deciding to go up to the desk and check that I had got my number right.
Me: I think I'm number 36 but my brain's not up to much, could you check?
Her: What's your name?
Me: Mary.
Her: Yes, you're 36. Oh dear. We seem to have forgotten you.

After reminding them of my existence, I was seen quite quickly and given a form. A whole new application form. Seems that they can't just change my designation, they need to renew my claim.

Back home and filling in the form, I got to the Third Thing, which in fairness wasn't so much a Waveney District Council thing as a JobcentrePlus thing. The Form requires an exact breakdown of my income, and I don't have handy the precise amount of Incapacity Benefit that I get. So, I decided to phone up and ask.

Third Cock-Up: The computer systems for Incapacity Benefit at the DWP were down and had been for most of the day. So no one could log in to check. Apparently I should try again tomorrow.

I've completed pretty much all of the form now, and hopefully I will be able to get that last bit of information and take it back to them either tomorrow or the next day. I feel utterly drained though.

DLA503a, "Written Statement of Reasons"

It arrived in the post this morning, four sides of A4 that it took them 14 days to print out and put in an envelope for me. This supports my theory that the Department of Work and Pensions only ever send letters like this out to people to arrive on a Saturday, when the helpline is closed. They would have sent it sooner, but then it would have arrived at a time when the helpline was available and that would just be too sporting.

One side is just the usual "If English is not your first language..." and "we would welcome any comments, good or bad..." and about two sides were this information which is pretty general knowledge, it's the simple list of what they ask you to think about when you are considering whether you should apply for DLA or not.

And four paragraphs pretended to explain why I was not awarded DLA. It's not really very helpful stuff though. It says things like "you can cope with all tasks for preparing a cooked main meal for one person if you have the ingredients", but it doesn't say why they think this, you know, like "your response to section X indicates that..." or "your GP tells us...". This statement, and others like it, lead me to suspect that they didn't even read my answers on the form. In fact at the moment I'm feeling rather hard pushed to create a response beyond simply repeating the stuff that's already on my forms that they just obviously haven't paid attention to.

There's also a sentence that doesn't really make sense - I can only imagine that while copy/pasting standard responses, someone made a mistake, because it reads:
"You may require help at time with bathing but your conditions are considered to be reasonable well controlled with your levels of medication taken." (all spellings and punctuation reproduced exactly). I'm not sure why having a bath has any connection to the effect my medication has on my condition. I have No Idea how to respond to this statement. Ideas welcome.

The reason I'm blogging when I should be working on my response, is because after a couple of sensible, thought-out responses, referencing evidence on my forms and the report from the specialist clinic and so on, I got to a point where all I could think of to type was "read my goddam forms, you morons". I doubt this would go down well with the reconsideration lot.