Optimistically, 1/52

For quite some time now I've been enjoying Carie's 52 Project photos - one photo a week of each of her children. She's doing it again this year and asked if anyone else wanted to join in.

Truth be told, I'm rather intimidated by the mummy blogger scene and while I admire a lot of the events, projects, photos and of course blogposts that happen within... the community appears to be full of overachievers and that's not me. I like taking snapshots with my phone, but I'm not a great photographer and have no burning desire to improve. I like writing, but I prefer sleep, and when I do write, I rarely hit Post. I like cake, but I buy it from a shop. I can knit, but slowly, and not particularly well. My Kidston-fu is lacking. Online mums evoke an even more extreme response of admiration and fear than the cool kids at school did.

But, I have the great privilege of knowing Carie in "real life", and although the tag of overachiever would perhaps not be entirely misplaced... she's just too friendly, pleasant and cheerful a person to be scary with it. And I feel confident that if I join in with her on the 52 Project, she's barely going to notice the quality of my photography and won't give a hoot about my failure to change my blog template since, um, well, ever. She's just going to enjoy seeing Jamie grow in the same way I enjoy seeing Kitty, Elma and Pip grow.

So, I'm taking the plunge and hoping to stick with it. Here goes, with picture number one...



I like this picture because it encompasses all the best bits of having Steve at home with us for the holidays (that's his hand disappearing in the bottom right hand corner). While we tried not to disrupt the routine too much, having lazy mornings of the three of us all playing on the bed together was an absolutely brilliant way to start the year.

BADD 2014

The ninth annual Blogging Against Disablism day will be on Thursday, 1st May. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.

Due to the overwhelming everythingness of last year, I didn't participate in BADD 2013. However, I loved taking part in 2008, 2009, 2010, 2011 and 2012. I'm thrilled that it's happening again in 2014.

BADD is not just for disabled people. If you feel like you have anything to say on the topic, then please go to Diary Of A Goldfish (Blogging Against Disablism Day) to sign up.

Naidex 2012

On Wednesday, I went to Naidex National at the NEC, Birmingham.

I have to say, Naidex itself wasn't as good as last year. Last year, I saw all sorts of innovative products and came home with lots of literature and a wish-list as long as my arm. I also picked up goodies like the National Trust's Access Guide, and was able to have demonstrated to me how much more comfortable an ergonomic office chair can be. A number of stallholders were communicating on Twitter, having actual conversations with people who said they were going to Naidex, encouraging them to come and say hi at their stall, and I dropped in on several of them. There were also a few inventor/entrepreneur types there, interested to hear ideas about what products we'd like to see in the future. I felt like I was the target market as a disabled adult in charge of her own home, equipment and finances.

This year was different. Only one company - PoolPods - engaged with me on Twitter. Their product, while I'm sure it's lovely, isn't really relevant to me - but I thought I would say hello anyway. Except I couldn't find them! Step One was easy, finding them in the list of exhibitors, they were listed under "P" for "PoolPods", simple. Stall G82. Step Two was slightly more difficult, trying to find Stall G82 on the printed room plan, but after a bit of hunting I spotted it tucked somewhere at the back of the hall. But Step Three, actually finding that stall? Couldn't do it. There were frequent traffic jams because a small cluster of two or three people standing in front of a stall could block half the aisle. Add to that the lack of signposting or labelling of the aisles (would it be so hard to have North-South aisles numbered 1, 2, 3, and East-West aisles labelled A, B, C?), the manoeuvrability issues of many attendees (wheelchairs don't tend to sidestep well, mobility scooters are often quite long) and the usual pedestrian traffic flow problems (people stopping for a chat on a busy intersection), and it was nigh-on impossible to follow a planned route to a particular point on the map. Nor was it possible to just wander up and down the aisles until you found what you were looking for - the layout was confusing, the aisles weren't continuous, and stalls faced all directions. There were several stalls I saw twice or three times and others I didn't see at all.

The small, interesting vendors with "everyday" disability products (such as Trabasack and DisabledGear) didn't seem to be present this year. I also felt that there were fewer stalls aimed at "people like me". For instance, I saw umpteen companies offering incredible, amazing off-road wheelchairs, powerchairs, hand-cycles and suchlike. We're talking massive knobbly off-road tyres, aggressive-looking LED arrays and exciting metallic paint finishes. That's great, but these aren't the sorts of chairs you can use for your everyday needs. You couldn't ride them into Starbucks, or a high-street shop, or a work meeting, or your kid's school for the parent-teacher evening. They also probably won't fold down to fit in the boot of the average Ford Focus, either. They're aimed at people who are disabled but who also have TENS of THOUSANDS of pounds to blow on leisure equipment over and above what they use every day. This made me feel sad. I mean, on the one hand it's terrific that disabled millionaires have so many choices of how to spend obscene sums of money, but on the other hand, products like comfortable wheelchair jeans are going to be far more relevant for far more people.

But! That was only part of why I went. The other part was to have the opportunity to meet up with other disabled people, and that was managed with great success. One is a very good friend who I have met before on several occasions, and we had a much-needed cup of tea together that in itself made up for the disappointment of the exhibition. Another person I have "known" and considered a friend for many years, but only online, and my PA tells me that my face lit up like a Christmas tree when I saw her for the first time. Others had familiar names and I'm pleased to be able to add faces. Eventually our group - consisting of two powerchair users, two manual wheelchair users (myself included), one person using a mobility scooter, and two people without any visible mobility aids at all - made our way into a well-known pub/restaurant chain for lunch.

Incidentally, I still get a thrill from that. Us being able to go and have lunch together in a pub is concrete proof that campaigning for equality works, has worked, and can continue to work. There's still a way to go, but it would have been unthinkable thirty years ago.

The meal was not spectacular. The company and the conversation were. There's an unusual sense of freedom when socialising with other disabled people, because you can actually go ahead and talk about disability issues without having to draw a diagram of the welfare/social care systems, and without being pitied, and without having to listen to any ablesplaining about how surely X doesn't happen any more, and the real problem is Y, and if you try Z it'll all be sorted out. No one feels the need to make the stupid jokes about running over people's toes and there's no sense of being the "odd one out". For me, it's also really refreshing to socialise in a role other than as "Steve's wife" - Steve is a nice person and so are his friends, and I like spending time with them, but it's a completely different thing to socialising as purely myself.

Of course we're all rather wiped out now. For spoonies, a look around an exhibition followed by a couple of hours having lunch and a chat with half a dozen friends can have repercussions for days on end. It's embarrassing to think about how long it's taken me to write this post. Nevertheless, I still think that despite the disappointment of the exhibition itself, the day was worth it.

I'm confused by the BBC

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

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

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

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

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

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

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

What does the BBC have to do with this?

Well, the BBC is confusing me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Guestbook

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

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

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

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

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

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

slow progress

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

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

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

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

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

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

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

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

Census 2011

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

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

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

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

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

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

One Month Before Heartbreak

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

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

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

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

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

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

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

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

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

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

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

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

Finally...

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

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

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

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

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.

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.

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.

Blogging Against Disablism Day will be on 1st May, 2010

Once again, the esteemed Diary Of A Goldfish is hosting the blogosphere's annual Blogging Against Disablism event. As usual, this is not a carnival of previously posted material or a "best of" selection - it's a co-ordinated effort of many people all posting fresh material on the theme of disablism.

Full information is available at the Blogging Against Disablism Day signup page along with links to archives from previous years.

Remember, you don't have to be disabled to join in. Disability is not an isolated experience and it's not something that anyone is immune from. I know I link to this every year, but I'm going to do it again - Lady Bracknell's One in Seven post spells out just how relevant, and how unacceptable, disability discrimination is to all of us.

You don't need to write an essay. You don't need to write at all. You can post video, audio, artwork, any format you like. This is about making our voices heard.

You also don't need to be filled with righteous anger or have your protesting hat on. There's room in BADD for everything and that includes some nice positive examples of the change that is slowly but surely happening. And you don't need to worry about getting all the words right - as usual, we have a Language Amnesty to account for cultural differences and to allow those who aren't politically involved to post without fear of being attacked for failing to use the most 'current' terminology.

Hope to see you there!

Not the WI

Not a great success.
Originally uploaded by girl_of_bats

Today I decided to make chocolate cornflake cakes, having in my kitchen both a box of cornflakes and a packet of chocolate bars that were getting dusty because no one fancied eating them.

Turns out, it IS possible to balls-up chocolate cornflake cakes. Who knew?

Things to remember for next time:

• Don't use snack bars of Galaxy and expect them to behave the same way as cooking chocolate.



• Don't look at the semi-molten, unappetisingly pale brown mess and decide that it's a good idea to add cocoa.



• Don't look at the consistency of your now dark-brown mess and decide that the best way to make it runnier will be to add a bit of water.

With a nod and a grin to Carie, multi-prize winner at her village show and a marvellous friend despite being my polar opposite in so many ways.

Book Review

At the beginning of June, Tom Reynolds of Random Acts of Reality fame released his second book, More Blood, More Sweat and Another Cup of Tea (also known as BST2 for ease of tagging).

I eagerly ripped open the Amazon package, started reading, almost joined gentleman blogger extraordinaire Scaryduck in a typo-spotting spree, and announced my intention of doing a quick review just as soon as I got to the end...

... and suddenly lost more or less all of my ability with words. Seriously. In the last two months Steve's finished working, he's been off on holiday (biking/camping in Scotland), I've been off on holiday (back to Lowestoft to see friends and family), I've finished several knitting projects, I've enjoyed weekly excursions with my PA, been to a couple of parties and generally been living a pleasant and stimulating life, yet all I've managed to blog are a couple of half-baked rambles about my disability-enhanced shopping skillz0rs and a G1 app that I wish existed. I've also had difficulty reading, which is why it's taken me until now to finish BST2.

I'd be ashamed to admit that and probably would have brushed my intent to review under the carpet as "no longer relevant" if it wasn't for the fact that Tom is probably wondering why it has taken me so long to notice that he's been lovely enough to namecheck me in the acknowledgements as one of the regular commenters on his blog, and I'm therefore even more ashamed that I have not in fact been commenting at all since then.

Still. The book is now finished, and a review was promised, and so a review there shall be, half-baked ramble or otherwise.

The first thing about this book is that it's available for free online as well as for cash from Amazon and regular high-street bookshops. I quite like having a tangible copy, myself.

The second thing about this book is that it isn't really a "read it all in one go" kind of book - it's a series of self-contained blogpost-length entries with very little by way of continuity or story arcs. This makes it rubbish as a novel, but fantastic as a book for looking at for ten minutes at a time, while you wait for the bath to run or the oven to preheat. It would also be a good book for the bathroom (insert obligatory joke about soft pages) or to take on holiday, because it doesn't take an hour to "just finish the chapter" or "just see what happened to this person" while someone else is tapping their foot and waiting for you.

It is quite similar in many ways to the first book, as you would expect for an autobiographical account of the same job with the same company by the same person during the same decade. There is a slightly different feel to it though. The first book Tom was quite "angry young man", whereas in this one he seems more cynical, but also more stoical.

That said, if you haven't read the first book or the blog, then odds are you will start to get angry about some of the nonsense that Tom and his colleagues have to deal with day in, day out. I'm sure most of us could put forward a few stories about out-of-touch management, irrelevant targets, and clueless customers, but for most of us, there aren't lives hanging in the balance.

It's not all doom and despair, though. Tom's dry sense of humour provokes more than a few quiet chuckles, and there are plenty of positive encounters, often when least expected. So although you get caught up in the writing and grind your teeth about the morons with the inflated sense of entitlement, you also feel gratified when people's humanity shines through and absolutely jubilant when a life is saved.


Edited 12:08 12/07/09 to update link

BADD 2009 Roundup

Phew. As Blogging Against Disablism Day gets bigger, it gets harder to keep on top of it. There have been some 200 entries this year, all of which can be found here. I've read about 120 of them since yesterday morning and now I can take no more. I will make the effort to read the others over the next week or so, but the intensive effort has to stop now.

For those of you who, for some strange reason, don't want to turn your eyeballs inside out and spend your entire Bank Holiday Weekend reading 200 posts about disablism, I decided to do like I did last year and post a rather more easily-digestible handful of my favourite BADD posts.

Remember, I haven't read all the posts yet and this is my top five percent of the posts that I have read, so if yours isn't in there, please don't take it as any kind of slight... oh, and it doesn't include posts from the half-dozen or so BADD bloggers who I consider "friends" because I felt that might be somewhat biased.

Laura at Gin & Comment: "Mainstream" schooling and disablism. A peripatetic English teacher in Japan writes about the different ways schoolchildren respond to disability when different approaches to integrated schooling are applied.

Lauredhel at Hoyden About Town: Can I have a seat? Discusses practical access issues in and around shops and services, and the issues involved in trying to explain access needs that go beyond having a ramp somewhere.

Dora Raymaker at Autism - Change.org: Just Because I'm Quiet Doesn't Mean I Don't Understand. Required reading for those who assume that just because a person can't communicate verbally (or at all) and/or "looks disabled", it therefore means they can't understand what you are saying about them.

RachelCreative: When My Disability Is Invisible raises the problem of assumptions in the other direction - people assuming that you can do what they are demanding of you and that your requests for help or adjustments are merely contrariness that can be safely ignored. This post is accompanied by some of Rachel's own wonderful disability artwork.

Sanabitur Anima Mea: Mild and Severe disability. About dependence, interdependence, and 'degrees' of disability. As the writer says: "I don’t believe there’s anyone out there who has the special magical amount of severity which is enough to get your needs taken seriously but not so much you get considered worthless."

Astrid at Astrid's Journal: BADD Behavior: Disablism in Psychiatry. Raising the point that some behaviours considered undesirable by mental health professionals may not be a symptom of the patient's condition, but might be a sane and understandable response to the (wilful or incidental) dehumanising treatment imposed on patients by those professionals for their own convenience.

Tony at Cynical Chatter From The Underworld: Fear and Loathing in the UK. Cynical indeed, a dark post about the negative portrayal and poor treatment of disabled people in our society, and the lack of meaningful protections against the consequences of this.


Enjoy. I'm going to go remind myself what natural light is all about.

Well-meaning Insults

For Blogging Against Disablism Day 2009.



On April 13th, I posted to alert my readers to the annual Blogging Against Disablism Day event. I was umm-ing and aah-ing over what particular topic I should write about - and then, like a gift from the gods, came this comment:

hi mary--
have been reading your blog for a bit, & this is sort of a response to your wanting to have a kid with steve.

it makes me sad to read your struggles, but i would beg you to leave that idea (or even adoption or fostering behind.)

how on earth could you take care of a child when you spend most of your time seriously broken? you seem like a lovely person & to put a child in that position would be cruel no matter how much you craved being a mommy.

please be careful, stay on birth control & accept that your fate is to not be able to go down a maternal road.

best to you. sandy

My first thought was to write a blogpost (or fifty) explaining exactly how Steve and I intend to deal with some of the challenges posed by parenthood, the potential solutions we've discussed about logistics, equipment, safety, human support and so on. But why? This isn't a parenting blog, and until such time as Steve and I decide to take active steps to make a family, there's no good reason for it to become one. Justifying my life choices to internet strangers seems like a poor way to spend my time and energy.

That's when I started to become angry. Of all the topics covered on my blog, from knitting to job interviews, from Social Services to fun days out, how is it that a stranger feels the need to "respond" solely to the idea of Steve and I having a family together - an issue last mentioned several months previously and in the context of a 99 things blog meme?

Simple answer: Disablism.

This wasn't a personal attack on me, or even a well-meant but blundering remark on my life as an individual. It had very little to do with Mary, Batsgirl, aged 27 and living with a boyfriend and a robot vacuum cleaner.

Sandy wasn't thinking about my personal capabilities, or my personal circumstances, or my personal motivations - how could she? I'm hardly the world's most regular blogger and only a fraction of my life is displayed on here. She was writing about a stereotype of a disabled person, or as she put it, someone "seriously broken". When that stereotype was challenged by my offhand mention of a one-day ambition to have a family, she was so shocked by it that she felt the need to "beg" me not to do it.

Sandy was assuming that, as a couple which includes a disabled person, Steve and I would be unable to raise a child.

Sandy was assuming that Steve and I would be unable to consider our own circumstances and resources and make a sensible decision for ourselves, and that it was therefore perfectly okay for her to tell us what we should and should not do with our lives.

Sandy asked "how on earth could you take care of a child?" as a rhetorical question - she wasn't interested in waiting for (let alone listening to) any response before moving straight on to dictating my "fate" because she had already made up her mind that a disabled person such as myself cannot take care of a child.

Sandy cannot open her mind enough to consider that a child who has a disabled parent could be happy, comfortable, loved and well looked after. She considers disabled parents to be "cruel" for inflicting their horrible crippled selves on an innocent kiddie. I suspect she's thinking of the telethon image of a melancholy 'young carer' gazing soulfully out of the window and begging for their childhood back. This article by Lucy Scholl offers a different perspective, as does this one by Laurence Clark.

Sandy was writing about her own prejudices, her own unsubstantiated views, and her own baseless assumptions. Sandy was writing about her fears, her closed-mindedness, and her negative mental picture of disabled people - and then superimposing all that onto me to pre-emptively accuse me of child abuse.

That's disablism.

What's encouraging, though, is that the tide is turning. After responding to Sandy's horrendous comment, I tweeted about how gobsmacked I was, and within minutes support was arriving in the form of blog comments, tweets, emails and suchlike, much of it from friends who aren't politically- or disability-minded. More and more 'ordinary people' are becoming more and more accepting of the idea that a disabled person is every bit as much a person as one who is not yet disabled. As a civilisation we have a lot of that journey still ahead of us, but I take heart from the knowledge that significant steps have been and will continue to be made.

Blogging Against Disablism Day will be on 1st May, 2009

Once again, the excellent Goldfish is hosting Blogging Against Disablism Day on May 1st 2009.

This will be the fourth year running for BADD (see archives of 2006, 2007, and 2008) and the second year I am participating. Well, I say second. My 2008 post is here. Technically I was around for 2007 but I wasn't in a fit state to write anything, and that could happen again, we'll see (currently I am drafting posts and then deciding they're rubbish, it'll be a minor miracle if I even publish this BADD reminder). Of course if anybody wanted to suggest a particular topic or news story for me to pull to bits, get me started, that might help. But better yet would be writing your own post and joining in - you don't have to be disabled and it's fun to be a part of the whole shebang.

Welfare Reform

I'm sure many of the people who read this blog will have encountered the stories in the news about James Purnell's work for welfare plans. On the face of it, and to particular types of people (generally the ones who are well educated/spoken/connected/balanced/experienced/etc enough to have never had too much trouble getting a job) the plans seem quite reasonable - "severely disabled people" and single parents of babies under one will be supported, everyone else will have to work for their money. And let's face it, those are the people we want to help with our taxes. We've had quite enough of supporting entire workless families like the Malcolm family who fulfil every stereotype of a feckless wastrel benefit scrounger that you ever heard (seriously, whichever reporter dug that lot up deserves a bloody medal).

Why does it bother me anyway? I have a job. Well, it bothers me because I know how extremely lucky I am to have got into a position where I could look for work, let alone how fortunate I was to actually get a job. I know that all it takes is one factor to slip - Steve and I breaking up, a change in Access to Work criteria, the company I work for to collapse - and all of a sudden I will be back on the scrapheap, and in a jobs market which is terrifying compared to what it was a year ago. It also bothers me because I know too many people who are in similar positions to the one I was in before I moved in with Steve, who would like to be working and earning their own money but simply aren't in a position to manage it.

The first problem is this "severely disabled" idea. The criteria for this is incredibly stringent. The Benefits and Work website has a free Employment and Support Allowance (ESA) self-assessment test. I count as disabled, but not severely enough that my capacity for work-related activity would be considered "limited", which has surprised a couple of people who know me.

It's not just me though. Here's an example from the DWP's own guidance (pdf):

"Customer receiving DLA (middle rate care) and DLA(higher rate mobility). A person with severe rheumatoid arthritis affecting the hands and feet, limiting the ability to walk and needing some help to wash, dress, cut up food, and attend to toileting needs. The customer is living alone and nobody receives Carer’s Allowance for looking after him."

That is an example of someone who is NOT considered to have limited capability to undertake work-related activity.

They cannot walk, dress, wash, eat, or go to the loo unaided, but they are considered to be perfectly able to do full work-related activity. And they will face "sanctions" if they cannot manage it.

How on earth does that work?!?

The second problem is the idea of full-time work-related activity or community work. Regular readers will be aware that I recently had to bow out of a great interview for a job that I really wanted to do at a place where I really wanted to work, just because it was full time. I'd love to earn full-time wages but the unfortunate truth is that I cannot manage to do a full-time job AND keep on top of life's essentials such as showering and eating and so on - as we've covered before, I'm pretty stretched just working part-time.

These new plans, however, would have me "working" 9-5, and facing "sanctions" when I failed to manage it. Which brings us neatly on to the third issue, which is rates of pay.

Basic ESA is £60.50 per week, which is the same as Jobseeker's Allowance for a person over 25 years of age. Then there's £24 on top of it for participating in the Work-Related Activity. I understand this is the bit that gets withdrawn if you "refuse to co-operate" by, for example, being stubbornly too ill to leave the house on more than one morning.

I suspect there are very few people reading this who would consider working full time for £85 a week, but disabled people will have a choice between that and real heat-or-eat poverty. You see, there are two good reasons why Incapacity Benefit at the long-term rate is more than Jobseeker's Allowance. The first reason is that a disabled person generally has to cover more costs than an able-bodied person. DLA (supposedly) accounts for the additional personal-care-related and mobility-related costs, for instance Meals on Wheels and taxi fares, but there are also increases in general costs - things like having to do more laundry due to frequently spilling things, buying more trousers because they wear through at the knees as you crawl around your home, or having to have an internet connection because you do not have the capacity to get to and around the local shops nor the supermarket for your essential groceries. The second reason is that it generally takes longer for a disabled person to secure a job, during which time they will have more household expenses of the sort that the able-bodied person on short-term JSA could defer until they'd got a job. I'll explain. Even putting aside issues of access and discrimination at the interview stage... let's say that the odds of getting a job are one in a hundred, so if you apply for a hundred jobs you will get one of them. While an able-bodied person could, technically, apply for every job in the paper that they were qualified for and hit the hundred in a few weeks, a disabled person with the same level of qualifications will only be able to apply for the few jobs that also match their physical capabilities - it could take a year or more to find a hundred suitable jobs to apply for during which time the boiler will still need repairing and the wheelchair will need a service.

Even Reasonable Adjustments and Access to work can't make everything possible. A reminder of a post I made before I got my job:

"I still have certain limitations. The obvious physical symptoms of my illness rule out quite a lot of things, especially in terms of the usual easy-to-get minimum-wage flexible-hours jobs. I don't think I'm in any way 'above' cleaning toilets or serving fast-food or collecting trolleys from a supermarket carpark, but I would do such an ineffective job of those tasks that really, another person would have to be employed just to pick up my slack."

Which brings me to my final point. Even with the job that I do, which looked possible enough to make it worthwhile applying, it costs quite a bit of money to keep me in work. I need taxis to and from work. There are no other transport options available to me so the taxpayer contributes about £40 a week to my taxi fares (I pay the rest). I also have a special machine, a mechanical press, bought by the taxpayer as I cannot use the hand-press my co-worker uses. That was £500. Other people need different things - Lilwatchergirl needed a wheelchair, an office chair, an ergonomic keyboard and mouse, and a PDA; Lady Bracknell's Editor needed a laptop and "Secure Remote Access System" to enable her to work from home when necessary, plus however many man-hours were required to untangle the inevitable snarl-ups; various other people have required voice recognition software or Braille displays or even actual human assistants to help with certain parts of their work. That's before we even get started on the costs of things of uncertain merit like DEAs and Remploy. All things considered, I suspect there are more than a couple of us who cost more money "working" than they did claiming IB. How will the costs of enabling us to attend and accomplish "work-related activity" be met on top of paying full ESA?

I don't have all, or indeed any of the answers, but what I have heard so far about the reforms strikes me as badly-thought-out and more than a little scary.

Remploy and MPs

Finally, a response regarding the Remploy problems. My MP referred the matter to Anne McGuire, the erstwhile Minister for Disabled People. The response consists of a letter from Anne McGuire to my MP regarding the matter (dated approximately two weeks before she was replaced by Jonathan Shaw), and a covering letter from my MP, as it went via his office.

As you'll see from that article, whilst in office Ms McGuire was all about welfare-to-work. And my MP is James Plaskitt, the Benefit Fraud Minister. Surely if anyone should be up in arms about a company like Remploy skewing the stats for disabled people entering employment, it's these two.

Oh dear. While I like having faith in humanity, and believe that people as individuals are generally good, fair, and basically nice, I really must stop being so naive as to extend this to politicians.

According to my MP, "It appears that there has been a genuine and unfortunate error in the handling of your case, for which Remploy and the Government offer their sincere apologies."

Not fifty quid, then. Nor any thanks for my honesty in not taking the money and running, or for alerting them to the problems. And I wonder, Mr Plaskitt, if you uncovered a Benefit Fraudster on the claimant side rather than the government side, would you let them off with "apologies"?

No. Even if a benefit claimant made a "genuine and unfortunate error", they'd be hounded through the courts and at the very least, be required to pay back the funds which they had received on the basis of the erroneous information.

The letter from Ms McGuire was a little more illuminating. Sort of. I'm not going to reproduce any of it here as it's full of management gibberish and unashamed weasel-speak, but ten years as a fan of Dilbert has enabled me to boil it down and so I present the basic content in English.

1. Contacting me: Oops.

2. Only sending the signature pages: Oops.

3. Wrong dates: Oops.

4. Telephone call: Oops.

It seems Remploy contacted a whole list of clients to try and get them onto the Workstep programme. The list contained the details of 16 people, myself included, who should not have been on the list. No one noticed until I spoke up. The other 15 are being 'reviewed'.

For each point there's a lot of meaningless flannel about "ongoing continuous improvement programme" and references to undefined "additional measures" which will be put in place. Oops is about the size of it, though.

As for the '£50 for returning some forms' business: apparently £50 is considered a perfectly reasonable "incentive" for people to return information. Neither Remploy, nor the DWP, nor the wider government see anything dodgy about that at all. My apologies to Wat Tyler and Dr Crippen.

Bloggers 1, MP 0

Two weeks on from the latest episode of the Remploy saga. Several thousand people have read that post, mostly thanks to links from prominent bloggers including Wat Tyler and NHS Blog Doctor.

As well as writing about the issue on my blog, I contacted my MP via the incredibly useful and informative They Work For You website. And the ball rolled...

The result of writing to my MP so far has been a pale yellow letter which arrived this morning, three lines thanking me for my correspondence and telling me that the matter is being raised with a "ministerial colleague" at DWP.

The result of blogging, however... the "Quality Matters" team at Remploy have seen my blog. They then did enough detective work to find my email address (not difficult given the amount of information they hold about me, but slightly more complicated than just clicking an 'email me' link) and sent me a nice email telling me that they are taking it seriously and starting an investigation. The investigation will be led by "a senior manager" from outside the department with whom the issues originated. They've given a timescale and provided me with a Service Level Agreement. They also replied immediately to my request that I be contacted by letter or email rather than by telephone. Even despite my usually high levels of cynicism, I'm feeling quite hopeful that the issue will be noted and taken seriously and maybe even avoided in future.


I also found out this morning that my MP is actually (sort of) connected to the DWP. He's one of the MPs who appears in this BBC News story which does a sterling job of confusing suspected or "potential" fraud, and overpayments due to cockups by the DWP, with actual Criminal Benefit Fraud as wilfully and successfully perpetrated by Very Bad People. Sigh.