Tuesday 29 March 2011

How I spent March 26th

Based on the TUC's access info I'd planned to meet a bunch of other WtBers in Savoy Street for 11am. This was supposed to be the gathering point for disabled people to have a "safe space" at the front of the march. I have brittle bones and I was with 2 people whose joints dislocate easily so the notion of a "safe" space where we wouldn't get smacked around was pretty important for us to protest, you know, safely.

Apparently no-one hit the TUC with a clue stick. The gathering point in Savoy Street wasn't actually at the front of the march. That would've been much too sensible. They had us gather in Savoy Street and then walk through the crowd to get to the front of the march:

Map showing the gathering point in Savoy Street and the distance we had to traipse through the crowd to get to the front of the march

The pink cross on the map shows where we gathered and the turquoise line shows how far we had to walk through a sea of people to get to that "safety". Moving through large crowds as a wheelchair user is not easy at the best of times. You're at arse height to everyone else and people don't tend to look down when they move around so they walk into you, trip over you and generally leave you feeling pretty bruised. Add banners, flags and other things that feel like weapons when people hit you with them and it's even worse.

So that the TUC had us gather some distance away and then walk through the crowd where we got a bit battered was a serious common sense fail. Between the lack of logic and getting smacked around I started off the march really quite pissed off.

This was us gathering in Savoy Street looking cheerful prior to our adventure through the crowd:

the 6 of us, 4 of us wearing WtB T-shirts, posing in Savoy St

This was my view of people's backs as we were making our way through the crowd:

The backs of lots of people in extremely close proximity to me. Most of them are carrying flags and banners with the bottom of the flagpole about level with my eyes.

And it's worth noting that I took this photo at a point while walking through the crowd when I had enough room around me to actually do so! I spent a lot of the time using my arms to protect my face from people's backpacks and such.

Eventually we did make it to the "special" spot:

Jack standing underneath a bridge with both thumbs up

Jack as taken by his wife Emsy

Thankfully once we'd made it through the crowd and the march set off there were no more such access fail dramas. As a result I began to really enjoy myself. The following 3 photos were taken by Emsy during the march:

>The backs of people marching along Whitehall, including Lou and me

Emsy's 'March for the Alternative: Jobs, Growth, Justice' flag

The backs of Jack and Sharon as we marched

We made it into Hyde Park at about 1pm (after what seemed like quite a long human traffic jam at Hyde Park Corner). Most of us quickly nipped to the loo and then headed off to Soho Square for the UK Uncut comedy at 2. I didn't want to stick around in Hyde Park for the rally mainly because Mr "I'm in favour of cutting disability benefits" Miliband was speaking. I feared my anger at him would cause me to regress a few evolutionary steps and start flinging faeces.

I've always been disabled, but until about 5 years ago I was perfectly "healthy"; I was free from illness. For many people there's a massive overlap between "illness" and "impairment", but there's also some differences too. So I've always had a rubbish skeleton but before I acquired a plethora of illnesses unrelated to my mobility impairment I used to do that working-for-a-living thing.

I used to be a stand-up comic. Yes, I'm aware of the irony of a wheelchair-using stand-up.

On Friday evening while I was in the supermarket shopping for more T-shirts to iron the WtB logo onto a thought occurred to me: "It's comedy against the cuts. I'm doing all this stuff about the cuts to disability benefits and I have a background in comedy; I should be speaking." So I emailed the organisers and asked if I could do a short set. The reply I got back was "the line up's pretty full, but we'll try and fit you in." But in the end (and with a little help from the lovely Johann) I ended up on the bill.

This photo by Chris Coltrane who compered the gig shows what the crowd looked like from where the acts were (and makes me happy that I ironed the WtB logo onto the back of my T-shirt):

A crowd of a couple of hundred people sitting in a horseshoe shape around Josie Long who is performing. In the foreground there's the backs of me and Johann Hari.

That's Josie Long performing. She opened the show. The crowd had gotten much, much, bigger by the time I went on. This CiF piece estimates there were nearly 1000 people watching the show. I wouldn't have thought there were quite that many, but there were certainly a couple of hundred.

Against all the odds I had a brilliant gig. Look, people were smiling and laughing!

Me performing. Because the audience were sitting in a circle (the horseshoe shape had closed to become circular by the time I went on) the photographer got in shot the people on the opposite side of the circle to her.

Photo by Noa Bodner

If you look you can even see Mark Thomas laughing along in that pic. I'm actually quite proud of that as he is, basically, the industry standard to which all political comedy gets compared.

I say "against all the odds" because by rights I really should have died on my arse. It's 3 and a half years since I last gigged due to becoming too ill to carry on with the comedy thang. Usually if you take a break from comedy for 3 and a half weeks you come back to find your timing's a little off and your rhythm's a bit out. And I wasn't doing tried and tested material, I was doing stuff that I'd written 12 hours earlier because I only had the idea to ask to go on about 18 hours before I ended up on "stage". I shouldn't have been "in shape" enough to deal with a heckler and turn around a joke that was a bit of a dud. OK, the heckler was very nice and friendly but it's still an interruption to your rhythm and you need to regain control and come out on top with a laugh.

Somehow it was all OK. Sure, it wasn't my best gig ever but given everything going against me it went so much better than I could ever possibly have dreamed of.

In the past I used to mix up jokes about disability issues and other stuff because if I'd only talked about disability I'd never have been able to hold the attention of a non-disabled audience. But given that Saturday was such a political gig and the reason I'd asked to speak was to talk about benefits I did a set solely about cuts to disability benefits. The only reaction I was really expecting was some polite applause when I finished from people thinking "aw, wasn't that nice the disabled woman telling us about benefits." I wasn't expecting such a warm response and to come off stage to have all my friends hug me at once. It was like being mauled by an octopus, but in a nice way.

I've always thought that comedy had a wonderful capacity for education, another reason I really wanted to speak. So I was chuffed to bits when I got home to read this in The Guardian's Live Blog about the day:

I just spoke to two teenagers aged 17 and 19 who have come from the comedy show in Soho Square, and they said that what they heard there made them think more than anything they have ever learnt at school. It's their first demonstration and when I asked why they came they said they realised that the demonstration is about more than just the UK.

They can understand the connection between the shops and the banks that people are targetting and the global situation that is effecting everyone. They've heard Mark Thomas and a disabled comedian and Johann Hari speak. For these teenagers the protest is absolutely opening their minds to a much wider picture.

Noa, who snapped that pic of me in action, said:

you rocked it woman, it was FUNNY and also very disturbing to learn a few of the stories you shared. many thanks and please keep healthy and get back on stage where you belong!

I'm absolutely thrilled that I opened some people's eyes to what's going on for disabled people in the UK. There's a couple of extracts from my set in the Laugh Out London podcast.

I left Soho Square on such an adrenaline high. I'd taken a huge gamble in asking to do a set but it absolutely paid off. I would have skipped home if I could, you know, skip.

Then came the sadness. I love doing stand up so much. It's such an amazing feeling when you've got hundreds of people laughing at jokes you wrote, and Saturday was a reminder of just how thrilling it is. It's so painful that I'm not well enough to perform any more. I have good days and bad, Saturday was obviously a good day. But the sheer frequency of the bad days means that I can't book gigs more than 14 hours in advance because I can never guarantee that I'll be well enough to show up. It doesn't matter if you have a legitimate reason for not showing up to a gig, if you let a promoter down they're not going to book you again and will very possibly bad-mouth you to other promoters. I have this thing that I love doing, and Saturday reminded me that I'm actually reasonably good at it, but my health prevents me from pursuing it. And the government and tabloids really think I'd rather be stuck at home claiming benefits than out following my dreams?

The other element of sadness on Saturday night came from watching BBC News attributing the Black Bloc protesters smashing things up to UK Uncut. UK Uncut are a group of peaceful protesters who'd given me this wonderfully enjoyable afternoon of comedy in a park. And here these lovely people were being falsely accused of violence and vandalism. It was deeply disappointing.

Despite the day starting with access fail and ending in sadness I don't think I'll ever forget that chunk of a few hours in the middle where I had the best time I've had in years.

Cross-posted on my personal blog.

Monday 28 March 2011

Full text of my Letter to the Evening Standard re 26th March

Re the TUC March & Rally 26th March 2011

The total number of people marching on Saturday, estimated to be in the region of 400-500,000, corresponds roughly to the number of severely disabled, economically disadvantaged people across the country, who are bearing the lion's share of the cuts.

Just try to imagine the impact seeing all the severely disabled victims of the cuts in one place at one time would have had!

We are the main group reliant on services from local authorities outside areas such as child protection which are more likely to have had funding safeguarded. We, however, have already seen our funding cut to reduce our quality of life, and now it is to be cut to below subsistence level.

In Hertfordshire, the average single, severely disabled person on means tested benefits such as income support like myself has already been paying £30-35 towards their support out of their Disability Living Allowance and Severe Disability premiums - now we will pay £55, often for just 5 hours of support whereas a carer has to provide 35 hours of care to qualify for the same amount in the form of Carers Allowance.

The council has been able to make this increase to charges worth £3 million, which it refers to as an "efficiency saving", because the so called “fairer charging” guidelines, which set out what the NHS & LA’s can charge for “social care”, allow for it.

Disabled people who work, or who have partners who work, however much money they are earning, will continue to receive their services for free because they are not in receipt of any means tested benefits and so don't come under the same consideration in the Dept of Health guidelines.

Meanwhile the council is simultaneously cutting back services such as home visits and halving the budget for the centrally funded Supporting People Initiative, providing services for those in sheltered housing, with the same illogical bias against disabled people on means tested benefits now the “ring-fencing” of this money has been removed. The same situation is sadly also happening across London, other Metropolitan Authorities and in every local authority like Hertfordshire up and down the country.

For disabled people with conditions like mine, Ehlers-Danlos Syndrome, which disrupts the collagen in our bodies, it's an especially counter-productive approach as without the appropriate care we often exert ourselves in damaging ways that mean we end up being expensively treated in hospital.

Main Ehler-Danlos Website Forum http://www.ehlers-danlos.org/forum/index.php

I was really hoping to go to the T.U.C. March on Saturday - but after hearing my application for judicial review of Hertfordshire's funding decisions has been rejected on the papers, have since been focusing on securing an oral hearing of my application instead.

The TUC for their part made great efforts to make the march accessible and include disabled speakers for the rally in Hyde Park - making clear it is not just Unison jobs under threat, but the people they are working to help.

They at least support the rallying cry of disabled people in the UK

“Nothing about Us without Us”.

Sadly though, many severely disabled people like me, who would like to have been there, were in the end simply unable to be there on the day because of the demands of the journey and the march itself. But the 400-500,000 who did march effectively represented each of us one for one in terms of numbers.

What was deeply regrettable for me and others given how many disabled people did fight the odds to make it to the march and rally therefore was the way disabled people were glossed over in the media coverage. Even when there were visibly disabled people in wheelchairs, crutches and using canes and walking aids moving past in the background of the news footage, reporters still failed to bring up this whole dimension of the debate - just another way that the disabled are finding themselves the silent victims of the cuts.

N.B. The edited version of the letter which appeared in todays edition also included a link back to the Where's the Benefit Blog for those wanting further information.

As for the High Court I am still awaiting the details and reasoning behind the initial decision but have already decided I simply must take the next step in the process which is to re-apply but seeking an oral "permissions" hearing so that I can make my detailed arguments in person rather than just in the form of a written submission.

I will also be armed with a copy of the chair of the Health and Adult Care Cabinet Panel's webcast on the day of the decision to approve the increased charges in which his own words confirm he doesn't even know how the current and proposed systems work and as such can not now claim to have taken the true impact on disabled people into account when reaching the decision as is required by law.

**DING DING" Seconds out - Round Two ..........

Watch this space for a blow by blow account of the rest of the fight. :)

Saturday 26 March 2011

On Naivety and Renewed Hope

Three years ago I wrote a terrifically na├»ve post for the BBC Ouch! Blog entitled Who's afraid of Wellfare Reform? At the time I believed that there was some real fear-mongering going on, brought about by conjecture on the part of a desperate unpopular government heading into a financial crash. I thought that it was all rhetoric – categorising unemployable people as employable makes for bad statistics. A financial crash was coming and in the next few years, the last thing any government would want to do was risk an artificial rise in unemployment.

I have to counteract the humility with which I admit to such a mistake with the only explanation I have; I am smarter than the government. It's not exactly a boast. Even if I shared the current administration's contempt for people without alarm clocks, the assault on disability benefits is becoming a political disaster. If things are allowed to carry on as they are going, hundreds of thousands of unemployable people will be added to the already record unemployment. Further hundreds of thousands, who they government is spending money on trying to support into work, will never get into work because either they are totally unfit for work or there is no work flexible enough to employ them. And then there is the shift in the media and public feeling, as the human cost increases.

There are three dominant narratives in our culture about disability; triumph, tragedy and villainry. Disabled villains are self-pitying wretches who frequently exaggerate or even fabricate their impairments in order to manipulate others. Thus the media's love of disability benefit fraud - the more audacious, the better. And thus the Daily Mails's recent glee in spinning disablity benefits statistics to make unremarkable facts, like some people have been disabled for more than ten years, sound scandalous.

But that can't last. Until recently, everyone had an anecdote about their friend's uncle's neighbour who claimed Incapacity Benefit for an ingrowing toenail, had one of those mythical free cars and spent half the year skiing on the Costa Brava. Increasingly, everyone has an anecdote about someone they know who has a serious chronic illness, but who has been denied disability benefits, is being subjected to months of stress as they appeal, isn't able to leave the house any more because they can't afford the energy and expense, isn't getting the practical care they need to keep clean and eat properly and so on.

Some people are in deadly danger. Only being a notch or two smarter than the government, three years ago I wrote “All we can be subjected to is yet more hassle and insecurity - not good, but not disasterous.” It was very clumsy to suggest that any increase in the hassle and insecurity we have always experienced wouldn't be disasterous for some of us, but I can't berate myself for failing to imagine that things could be handled this badly. There has always hassle and insecurity - this autumn I was dealing with DLA renewal forms and divorce papers at the same time, and I really couldn't say which was the greatest source of stress. But it is as if the holes in the safety net are widening and falling straight through is becoming a serious prospect for people who don't have the resources or the energy to reach out and cling on. Our most vulnerable have become so much more vulnerable.

It was a matter of time before the tragedies associated with the disability benefit cuts became the story. This has already begun, chiefly in the Guardian and the Mirror. And this government have done as much as they could to turn the public against disabled people – hate crime which includes a reference to DLA simply cannot be unconnected to government rhetoric on disability benefits. But they have forgotten that disabled people are the public. Disabled people are the public's friends, neighbours and family members. Disabled people are what non-disabled people frequently become with age. Disability benefits and the public services we rely upon are part of the deal that everyone has been paying tax for, so that if they or those they love have the need, the support will be there.

Thanks and good wishes to everyone marching today from those of us whose impairments prevent us from doing so. If you're at home today, you can still participate in the DPAC virtual protest and follow the @wheresbenefit gang on Twitter.

Kettled in Cyberspace

I can’t be in London to protest on Saturday; I’ve talked about why that is in another post, discussing how disability prevents me and many thousands more like me from getting out there in public and putting a human face of the mass of disabled people deliberately demonized as feckless and fraudulent benefit scroungers by the unholy alliance of political parties and right-wing media. If we can’t make our message heard in public, can’t get it picked up by the few media organizations who are independent enough, ethical enough, to tell our story, then the most effective means of spreading our message are denied to us.

But that doesn’t mean every option is denied to us. Cyberspace is increasingly a venue for protest, just look at the stories coming out of the Middle East, just look at the desperate repression of virtual forms of protest by the dictatorial governments in both the Middle East and China, and cyberspace is an environment that many of us can access no matter our disability, no matter the restrictions it places on us. A simple trip into town today to collect a repeat prescription meant hours curled up on the couch, sleeping off the physical impact of the trip, and means that I’m now writing this a little after midnight, far later than intended, a time of day when making a physical protest in person would be pointless, but in cyberspace the time of day means nothing, my message will be read by you whenever you get around to it and the physical limitations of my disability are taken out of the equation.

So I won’t be protesting in London tomorrow, but that doesn’t mean I won’t be protesting, I’ll continue to post both here at Where’s the Benefit and in my own blog and I’ll spend the weekend polishing my submission to the Parliamentary Works and Pensions Committee’s investigation into the realities of ESA and the WCA and the real impact they’re having on disabled people. I’ll copy that protest to my MP, no matter she’s a Conservative, because if I don’t tell her what the reality is then her party certainly won’t. I may not be able to stand in the crowd on Saturday, but that doesn’t mean my voice cannot be heard, it doesn’t mean your voice cannot be heard. Write to your local papers, write to your MP, write to other MPs, blog about what is happening to you, what the cuts really mean, tell your friends on Facebook, tweet your truth to the masses. Cyberspace is an environment in which we can transcend the physical limitations of our disabilities to protest like any other person, the choice to take advantage of that medium and let our individual truths be known lies with each of us.

The Great Unheard

I won’t be marching at the March for the Alternative on Saturday, I won’t even be sitting at the static protest. My disability means that even if I got there and turned straight around I’d be feeling the effects for days, maybe even weeks or months. And in that I’m far from alone. As disabled people we have restrictions on our ability to protest that mean it is far more difficult for us to get out there and tell our stories, to put a human face on the people hit by the cuts and demonised by the press and the government PR apparat.

Previous marches have seen problems for disabled people, most visibly the brave boys in blue from the Met hurling Jody McIntyre from his wheelchair not once but twice, but even more passive policing can be threatening to disabled people. The Met is in love with the idea of kettling as a responsible form of crowd control (no matter its criticism by everyone up to and including their own Commissioner), but whereas able-bodied protesters may be able to physically withstand an indiscriminate decision to hold them in the street for hours, whether they have done anything against the law or not, many disabled people would have their health threatened, even endangered, by being held in the open. Then there’s the stewarding of disabled protesters by both police and march organisers to consider, a friend’s description of the Birmingham march sends shudders down my spine making me grateful I wasn’t there. Not because of any trouble, or overt police action against protesters, but simple cluelessness about how to make sure that disabled people are able to protest without being endangered by those charged with protecting them. Simple basics like how long the march was, where it was going appear not to have been communicated to people, and decisions were made on the fly to reroute protesters that could have endangered disabled people if the disabled people themselves hadn’t actively taken charge of ensuring everyone, whether mobility impaired, sensory impaired or whatever was able to safely extricate themselves from the situation police and stewards had created.

Sadly this cluelessness appears to have permeated planning for the March For the Alternative. There’s something badly wrong when individual disabled people are being asked to determine how many of us might turn up and inconvenience the police by being disabled in public, because the Met are clueless and have dumped that responsibility onto the TUC, who are equally clueless as to the answer, but at least know some real disabled people. Anyone else can spontaneously decide to turn up at the march and exercise their right to protest, but if we’re disabled then apparently we were supposed to fill in a form at least a week prior to the march (giving name, address and vehicle reg) in order to ensure we can be given a permit to be let through into our own private kettle. If that’s not a clear sign of our inequality then I don’t know what is. Even a day before the march it is possible to find disabled people who’ve only just been told that the coach bringing protesters from their local disabled people’s organisation won’t be allowed into Central London, that they’ll just be dumped out on the station concourse at Stratford and expected to negotiate the (barely accessible) Tube to central London on their own.

So, however many hundreds of thousands of people turn up at the protest tomorrow, remember that somewhere between one in four and one in five of the population are disabled, that those of us who are most disabled, most desperately in need of support from the government and society, have been selectively targeted for the cuts, deliberately demonised to the general public to justify them and that, no matter how many of us would want to be there, for tens of thousands of us it is simply physically impossible. We are the people hit hardest, yet least able to take our message to the public. We are the great unheard, the silent victims in the government’s war on those who don’t fit its mantra of work or be damned to you.

(And as if to emphasise my message, I’m writing this hours later than intended because my body’s reaction to a half hour trip into town to pick up a repeat prescription was to demand that I curl up and sleep for six hours).

No Alternative

So Ed Milliband has announced he wants us to tell him what we want. He says he’ll be speaking at the March for the Alternative on Saturday, yet would have made cuts if he had been in power.

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.

There’s no point in you speaking tomorrow, Mr. Milliband, the march is about an alternative strategy, and as far as disabled people are concerned, you and your predecessors have reduced the Labour Party to just another pale clone of the Liberals and the Tories. And isn’t that just a damned shame!

Friday 25 March 2011


Here in WtB Towers (OK, my living room) we're getting all excited about tomorrow's march. My flat has turned into a T-shirt factory.

Should you wish to join us on the march we'll be meeting at the main disabled people's meeting point in Savoy Street at 11am. For details on that meeting point and other access arrangements see the TUC's page with access info.

Should you wish to wear your very own WtB T-shirt - the hottest fashion accessory for protesting - you can download our T-shirt logo as designed by our own incurable hippie from here. All you need to do is get your hands on some iron-on transfers and a plain T-shirt. It's A4 sized, you need to cut along the black line to separate the "back" logo from the "front" logo. (N.B. Depending on what transfers you get you might need to reverse the image before printing.)

Here's what the T-shirt looks like:


Back of T-shirt


If you would like to hand out some WtB flyers they're also available to download. The black and white version is here while a full colour version is available here.

Really hope to meet oodles of you tomorrow. Don't forget that if you're physically unable to make it, you can make your voice heard online via DPAC's virtual protest.

Wednesday 23 March 2011

How will today's budget affect disabled people?

I didn't watch the Budget live this afternoon, and when I was back online I was expecting a flurry of tweets about how it would affect disabled people. There was nothing. The BBC summary of Key Points, and the Independent's summary do not mention disabled people at all, and the BBC Budget Calculator, to work out how much better or worse off will you be in the coming year following the Budget is only for people in paid employment, with no mention of benefits as income other than non-state pensions.

The one piece of possibly good news is that the government are going to 'revisit the issue' of whether the Mobility Component of DLA should be removed for those in residential care.

In the Guardian Columnists' Verdict of the budget. Jackie Ashley says,
I was reminded of that speech Neil Kinnock made back in 1983, warning of the dangers of a Tory government: "I warn you not to be ordinary," he said, "I warn you not to fall ill, I warn you not to get old."

His warnings seem appropriate today: this budget was all about help for business, but with little regard for those not lucky enough to be able to fund a start-up. What about the old? What about the disabled?
and she summarises that, "There was no mitigation of the £18bn cuts in welfare announced in the spending review last autumn".

And for those of you with private jets, I'm afraid you will be paying a little more, but don't worry, the reduction in corporation tax may help to ease the blow.

It is hard to understand why corporations will be paying less, and disabled people barely merit a mention. If the mobility component of DLA for people in residential care is kept, that is a good thing, but all the rest of the disability benefit cuts look like they are still going ahead.

Like I said, I did not watch the Budget myself, and am relying on others' reports about it, but from what I can see, we are again invisible.

[Edited to add: We have had confirmation from Anne Begg MP about what is happening with the Mobility Component of DLA for people in residential care. She says, "They have just delayed it by 2 years. Savings shown in Red Book from 2013 instead of 2011 which was original plan".]

Tuesday 15 March 2011

Talk is Easy

So the Lib-Dem Spring Conference is over and the activists have headed back to their constituencies, patting themselves on the back for telling their leaders they have to be something more than just a Tory sock-puppet when it comes to things like the NHS and DLA Mobility Component.

Talk is easy, but the Liberal Democrats currently stand complicit in a massed attack on the benefits disabled people need to enable them be truly equal in our society. It isn’t just DLA Mobility Component where we are under attack, it’s the threat to DLA as a whole, with an expected 20% cut in the people eligible for the replacement benefit — does the Government somehow have Lourdes and St Bernadette on tap to manage the miracle cures needed? Or is the truth that 1 in 5 people are going to see their benefits slashed without any change in their acute need for those benefits (and with ATOS running the assessments it’s likely to be 4 in 5 refused, not 1 in 5).

Then there’s ESA, where Lib-Dems like Danny Alexander railed against the inequity of ATOS WCA assessments in opposition, but suddenly became rabid supporters in government. I’m one of those ESA claimants, so let me put a human face on the benefit scrounging scum Cameron and IDS would have people believe we are. I didn’t opt out of Alarm Clock Britain, it opted out of me. I worked through 20 years of disability, often working even while curled up in pain on the office floor, until my employer decided disabled people were just too much of a bother and got rid of me. Every employment consultant I spoke to told me to forget about the private sector, that discrimination in recruitment of disabled people is so rife I would be wasting my time, that the public sector was only a little better. I claimed JSA, but DWP is incapable of dealing with claimants who are either disabled people or highly qualified and God help you if you are both. It took a complaint to the Minister for Disabled People to get them to admit I couldn’t be treated like everyone else and they only way they could do that was by placing me on ESA.

I passed my ESA WCA, despite ATOS destroying six weeks of my life at the first attempt (and claiming that I had failed to attend rather than admit that they had failed to provide the needed reasonable adjustments), the second attempt was nearly as bad and it was only when I became visibly physically distressed from the amount of pain I was in that the doctor stopped trying to force my situation into his computer generated script and deigned to treat me like an individual. And yet, sometime early next year, because I’m claiming Contributions Related ESA, my household income will drop to precisely zero, never mind that my disability is actually becoming worse, not better.

Then there is the savaging of the Independent Living Fund and all the other disability related benefits that are under threat, many gatewayed by DLA or the other benefits that are already being undermined, or funded by Local Authorities who have seen their budgets slashed and see us as an easy target with little political muscle to defend ourselves. We see the results in the replies here and on other disability sites when disabled people talk about the fear they are living under, far too many about how they are contemplating suicide if the cuts go through. That’s a proud legacy for the Liberal Democrat’s first year in office.

Talk is easy, votes count.

Sunday 13 March 2011

In Comedy, Truth

It's all over the net at the minute so we may as well have our own version:

A banker, a Daily Mail reader and a disabled person are sitting at a table sharing 12 biscuits. The banker bolts down 11 of them and says to the Daily Mail reader, "Watch out for the welfare scrounger, he wants your biscuit"

(Any resemblance between the banker and Lord Freud is purely intentional)

Clegg's Alarm Clock Britain

So Nick Clegg has stood in front of the Liberal Democrat's Spring Conference and told them that he stands for 'Alarm Clock Britain', a phrase repeated no less than five times in his speech. Apparently 'Alarm Clock Britain' stands for 'basic rate taxpayers who get up in the dark, get their children ready for school and then go out to work'. So presumably because my disability now means I can no longer work, because I can't sleep to any set pattern, because I no longer earn enough to pay basic rate tax, to the Liberal Democrats I no longer count, what happens to me and to the tens of thousands of disabled people in similar positions, does not concern them. The support we need can happily be gutted to make sure the alarm clock users don't feel the pinch.

Clegg promised his party faithful that "We will never lose our soul", but, Mr Clegg, the moment the Liberal Democrats stopped caring for every member of our society was the moment they sold their soul to the Devil.

SEN reforms - cuts by the back door?

The proposed SEN reforms were in the news this week, but for the wrong reasons.

Currently, 1 in 5 children is considered to have a Special Educational Need, the most severe of whom will have a “statement”. Children with SEN are currently helped in school, with tactics such as different teaching materials and perhaps one to one coaching (“School Action”). If this doesn’t work, external services such as a Child Psychologist can be called upon (“School Action Plus”), and children with statements will get additional help specific to their needs. At present, schools receive extra funding for each child with SEN.

The proposed reforms will do away with the existing system and seek to remove statementing. Children will then be helped in two ways; with better teaching in schools which should benefit every child, not just those with SEN, and by providing parents with a budget which can be spent on help for their children. Apparently this is not a cost cutting exercise.

However, there are two concerns being raised regarding the system, in particular by groups such as the National Autistic Society:

1) That this is a cut by the back door... removing specific funding for SEN children from schools while still expecting them to raise standards of attainment for all children, those with SEN included


2) That because of other cuts – to external services – children will not be able to access all the support they need. Nor will there be appropriate support for parents, who will have to administer their child’s budget.

Indeed, Lorraine Petersen, chief executive of the National Association for Special Educational Needs (Nasen), warns in the Guardian of the potential issues:

"We need to acknowledge that some parents will need more support than others. With the reduction in key personnel at local authority level, Nasen has a concern that those advocates will not be available for parents to turn to.” Petersen is also concerned about what would happen if the child’s current provision costs more than the budget allocated to their parents.

Already, this so-called reform is looking like a method of making cuts by the back door – and any changes that do go ahead will be endangered by existing cuts that have taken place.

There is a final concern, that a statement is a useful tool which lists a child’s needs and the intervention they should receive. Without the existing statementing process, care must be taken to ensure that children do not fall through the cracks – and find that they are unable to get any help at all.

Friday 11 March 2011

Beryl's story: Collapsed lung? You still can't have ESA

Beryl is a woman in her 50s, who has worked all her life and feels she’s always done an honest life’s work. She works as a piano tuner – a very physical job, but one she loves and had every intention of continuing until retirement. That is, until she fell ill, in May 2010. At that point, she hoped that the system would provide for her...

Beryl went to A&E in May 2010 barely able to breathe and was told she had dry pleurisy and a collapsed lung. She struggled for every step, fighting to put one foot in front of the other, as she could barely get enough oxygen into her body. Yet when she applied for ESA and attended a medical in this state, she was passed fit for work. The Atos doctor did not even notice that Beryl was presenting with a collapsed lung.

Not being awarded a benefit to which she was entitled, while clearly unable to work, put Beryl into a difficult situation. From having been able to afford what she needed, Beryl had to adjust, juggling household money in order to keep her business afloat, paying bills for things such as a Yellow Pages advert taken out in good faith, but with several months yet to pay.

“It’s not the money,” she told me, “it’s that they don’t believe you. Every time you speak to people on the phone they say ‘I’m sorry to bother you, I can hear that you’re ill’ but the powers that be have decided that I’m fit to work.”

Beryl appealed. She wrote to her MP, and sent a bundle of supporting evidence to the Job Centre, including letters from her GP and her consultant stating that she could barely walk or breathe, and that it would be at least a year before Beryl could hope to have recovered, if indeed she would recover at all. The appeal was heard in December 2010. However, they did not consider any of the new evidence – it was a mere rubberstamp exercise, to confirm the original decision. Although Beryl was too weak to leave the house, now relying on neighbours to bring food and help her to manage, the Job Centre decided she was fit and able to return to work.

Fortunately, Beryl was awarded Disability Living Allowance and a Blue Badge which has helped her to some extent; she won these on the same evidence presented for her ESA application. She has also applied for a tribunal for her ESA, which means that she has to be paid until the tribunal is heard, but she will still have to go through the stress of a hearing to prove entitlement, something Beryl is dreading.

The MP has written asking the Department of Work and Pensions to investigate, and for a copy of their files, but has had no reply.

Beryl is still very unwell. Although she now has a diagnosis, there are no guarantees as to what level her health can be restored – she may be disabled for the rest of her life, and will certainly remain seriously ill for the near future. However, she is still being chased by the Job Centre, because as far as they’re concerned there’s nothing wrong with her.

A lovely lady works all her life, builds up a successful business, pays her taxes – and then the system lets her down when she needs it most. Ten months from when she fell ill Beryl still hasn’t been awarded ESA, but as she can barely manage to make a cup of tea she certainly couldn’t return to work. This is the system we trust to support us when we need it most. The system, quite frankly, is screwed.

[This article was also posted at FlashSays.com]

Wednesday 9 March 2011

2nd Reading of Welfare Reform Bill - Summary

Today was the 2nd reading of the Welfare Reform Bill and, on the whole, it seemed a very constructive, mannerly affair with both sides of the house making reasoned arguments. There seemed to be a genuine desire on both sides of the house to make sure the reforms were fair and any problems resolved.

The main points that came up time and again were those things IDS couldn't confirm, the parts of reform for which details haven't been decided despite them being in the original bill. These include :

  • Child Tax Credit will be abolished but IDS cannot confirm what will take it's place One study seems to imply that whilst currently up to 97% of childcare is paid for, this might drop to 70% acting as a disincentive to work.
  • We also don't know what will happen about free school meals, passporting of benefits, disability premiums, housing for those on DLA or whether DLA will continue after retirement age. Council tax benefit and elements of support for carers are also unclear. Labour argued throughout the debate that there were far too many details yet to be presented to the house.
  • Labour continually pointed out that without work to go to, these reforms would fail and cause hardship and inequality. Jobs must be the starting point for welfare reform.
  • The savings cap came up over and over again. Members argued that capping savings at £16,000 for those on Universal Credit did not "foster ambition"
  • Members on both sides raised concerns over the Work Capability Assessments and reassurance was given that these would be addressed.

It was however, noticeable from the start that by far the biggest issue was sickness and disability benefit reform. It came up over and over again from members on both sides of the house, many waving sheaths of letters from frightened constituents. A huge congratulations to campaigners who have worked tirelessly to make sure that MPs were well informed on the issues sick and disabled people face. It showed in every part of the debate that the message had got through.

Questions were asked on DLA and it seems that the government have backed down on scrapping mobility payments for adults in care homes. Liam Byrne pushed IDS for confirmation which wasn't quite given, but it was certainly a stronger concession than was given last week.

For a while it looked as though Labour might back down on time limiting ESA and certainly, many Labour MPs raised this issue as one of the greatest causes for concern. Byrne didn't quite back down, but it seemed to me that this may still be up for debate - a positive sign.

Many MPs also mentioned that DLA was in little need of reform. It was an occurring theme that announcing a 20% cut in the benefit before any assessment had taken place could only be viewed as a cost cutting measure and would understandably cause concern. I wondered if there might be a push to remove DLA from the WRB altogether as too many details were still too unclear? Watch this space.

Concerns were raised over ATOS and the assessment process. IDS was pushed on whether he would reconsider inflicting regular assessments on those who's disabilities were lifelong or degenerative. this was one area he stood very firm on. He saw nothing wrong with assessing ANY benefit regularly.

The Conservative side of the argument was nearly always that benefits were far too complicated and that work must pay. I disagree with neither of those statements and felt that there would be little resistance to changing specific details as long as those two points were rigorously upheld. They mentioned a desire to see real jobs that pay - another desire I can't disagree with

Finally, I'd like to point out that attendance in the house was shameful. A handful of MPs scattered the benches during this, the most important change to our welfare system for 60 years. Along with the NHS proposals, I urge every MP to take his or her responsibility more seriously in our name. They all need to be informed on these proposals and surely every constituent has the right to think that his or her MP will give this enormous overhaul their full attention?

Sadly, right at the end when the cameras came in, Chris Grayling, the final speaker, turned the debate into a party political row. It wasn't like that all the way through. This issue should be above politics. To their credit, most who spoke managed this admirably.

The (Lab) amendment failed by 244 Ayes, 317 Noes. Where were the other 89 MPs? Again, I don't care about excuses. This is too important to miss.

Tuesday 8 March 2011

Addicted to Benefits

The article's a few weeks old now, but prior to the second reading of the Welfare Reform Bill tomorrow I wanted to take a look at an article the Secretary of State for Work and Pensions, Iain Duncan Smith, wrote in The Telegraph in advance of the first reading. I did mean to write about this at the time the article was published but - funnily enough for a person with chronic health problems - I've been to ill to do so.

The article starts with a problematic headline:

It's time to end this addiction to benefits

We tend to think of "addictions" as unbreakable bad habits. When we think of addictions we think of people hooked on drugs, alcohol, tobacco or gambling. We have mental images of people stealing to pay for their heroin fix, people turning yellow because the booze has wrecked their liver, people whose spending priority is their fags no matter what essentials they have to go without and gamblers being chased by loan sharks because the football team they'd placed their last hope with didn't win. We think of self-destruction.

IDS is clearly trying to keep up the government propaganda that benefits are a hook that destroys lives; that they're like Pringles and you just can't stop.

Except benefits don't destroy lives, they save lives. My ability to earn my keep was destroyed by illness. If I lost my benefits, I'd lose my home. It's notoriously difficult to access medical care when homeless. Without my vast amounts of prescription meds every day I would not be able to go on living, the physical pain would be more than I could bear. People have already died after losing their benefits, people like Paul Reekie. It's not the benefits that are destructive, it's their stoppage.

Yes I'm benefit dependent, but that's a world away from being addicted.

Duncan Smith wheels out the lines we've heard so many times in this assault on benefit claimants like "those who spend two years or more on incapacity benefit are more likely to die than to work again." Ya think? Sometimes ill people die rather than recovering and finding a job. People like George from Chesterfield who was deemed by ATOS as well enough to do some kind of work and placed in the Work Related Activity Group for ESA. He died the day before another Atos medical.

I'm not the sharpest tool in the shed, especially when it comes to maths and numbers; and I'm not ashamed to admit that. I leave the number crunching to people who understand that sort of thing while I focus my attention on stuff I do get. However even I, with my limited mathematical knowledge, can see the flaw in this:

Incredibly, the proportion of working-age adults living in poverty is the highest since records began.

Because his proposal for dealing with the problem is to make sure poor people have less money. Like I say, I'm no maths whizz, but even I can see that if someone hasn't got enough of something, and you take away some of the little they have got, then what they're left with is even less than they had to start with. And I'm fairly sure that I could've deduced that in pre-school using Smarties: If one needs 10 Smarties but one only has 7 Smarties then taking an extra 2 Smarties away does not 10 Smarties make. This guy is responsible for administering the nation's welfare state despite having less grasp of economics than I had at the age of 4.

IDS devotes a whole paragraph to the lies about DLA that I debunked a few weeks ago in More Mail Lies. I would say "you'd hope the minister responsible for benefits would know more than the Daily Mail," except the Mail article was, of course, based on a press release by Iain's department.

Mr Smith says that the idea of the welfare state was to make society "fairer" but that the ideals were never realised and that the Welfare Reform Bill is about changing that. He's right, the welfare state has never been that fair; my combined benefits fall short of what's needed to reach a minimum standard of living and many people find DLA isn't enough to cover their disability-related costs. But reducing those amounts won't make the system any more fair; just ask any pre-schooler with some Smarties on the table in front of them.

Thursday 3 March 2011

Legal Challenge to the Cuts In Hertfordshire

This is the detailed application I have lodged with the High Court requesting a full Judicial Review of Hertfordshire County Council's changes to policy on charging for care together with cuts in services and the slashing of funding to the very third party organisations who are expected to pick up the slack as from April Fools Day 2011 when the cuts start to bite.

Case Lodged 28th February 2011 at the Royal Courts of Justice

Detailed Statement of Grounds

Hertfordshire County Council have clearly failed to meet their duties under Section 49(a) of the Disability Discrimination Act as amended by the Disability Discrimination Act 2005 commonly known as the "Disability Equality Duty" (DED) which will form part of the "General Duty" under the provisions of the Equalities Act 2010 which comes into force in April 2011.

The consultation on proposals to change the Council's Non-residential Services charging policy, carried out between August and October of 2010, failed to meet the standards required under the DED and the provisions of the Department of Health Guidance for Councils with Social Services Responsibilities issued in 2003.

The Council have failed to have due regard of the government's announcements regarding additional funds which are being set aside precisely to offset the disadvantage disabled people and their carers face due to the austerity measures.

The planned reductions in funding to organisations such as Hertfordshire Action on Disability and the Supporting People Service and proposed restructuring of The Money Advice unit have/or are being put through without any consultation with those directly affected and in direct contradiction of the stated rationale for changes to Non-residential Services policy.

The changes in Non-residential charging policy are due to be implemented from 1st April 2011 it is therefore imperative that the issues raised in this application be resolved prior to that date given the chaos, uncertainty and distress to service users that will ensue if the changes are implemented and then have to be reversed at a later date. This is particularly true for the two grant funded bodies who are currently having to consider staff reductions and redundancies based on the reductions in their funding recently announced by Hertfordshire County Council.

It is also in Hertfordshire County Council's best interests that this matter be resolved as a matter of urgency in order that suitable provision can be made for funding any shortfall in revenue and/or the need to provide additional grant aid over and above that now proposed to Hertfordshire Action on Disability and Community Support Services throughout the county as a result of any lawful consultation and reconsideration of the policies in question under this application for judicial review.

As with the recent judicial review of the decision by the Leaders' Committee of London Councils to cut £10m from their £26.4m Grants Scheme, where it was held that decisions taken were unlawful because of failure to meet Public Sector Equality Duties, the result of this judicial review may well have far reaching implication for other local authorities and the bodies which they fund to provide services to disabled people.

An urgent clarification of the law in regard to what constitutes a "lawful" consultation in relation to changes in policy relating to disabled people and or the subsequent consideration of that policy will, therefore, be of benefit to all the service users of other local authorities in England, many of whom are currently in the process of imposing similar increases to charges at the same time as reducing services to these disabled people and at the same time also reducing the level of funding provided to the third sector organisations expected to pick up the slack following those cuts.

The interim order I am seeking is as follows:

"It be ordered that changes to the Hertfordshire County Council's Non-residential care charging policy and reductions in funding to relevant grant aided providers of services to disabled people in Hertfordshire, such as Hertfordshire Action on Disability and Community Support Services, be put on hold pending the result of the judicial review and thereafter be subject to any further directions or orders made by the court in respect of the judicial review in question."

Main Facts Relied on are as follows:

1. The original "Consultation" Document sent out via letter on the 21st July 2010 (pg 54 - 56) stresses throughout that the main rationale for the changes is to avoid making cuts in front line services. However, later decisions by HCC will clearly impact on front line services due to cuts in funding of organisations that provide services to disabled people and most notably with the 50% cut in the budget for the Community Support Service.

2. No mention is made at all about the inclusion of services provided by the Community Support Service to those in sheltered accommodation including those with extra care arrangements and/or those living in the community who none-the-less need to make use of their services from time to time like myself. In fact it was only the fact that I was considering moving into such sheltered housing myself whilst the consultation was underway that a member of staff "warned" me not to follow that option as they were aware of the implications for my net income if I was relying on the existing arrangements for Community Support.

3. In fact HCC went even further and actually forbade front line workers discussing the changes to charging with this particular group with the only direct information about the impending changes being that contained in the letter from Community Support Services to clients dated 4th February despite the fact many in this group will be hardest hit by the changes as currently those on housing benefit are entitled to free support but will be subject to the full impact of the changes to the tune of approximately £55.00 per week in many cases (pg 91)

4. Again no mention is made about the increase in charges for Meals on Wheels but this is included in the final report as though it had been part of the main consultation.

5. Despite it being obvious that the main group affected by the changes will be exactly the same group as were hit by the original change to "fairer" charging i.e. single adults in receipt of the severe disability premium of Income support or the equivalent for those on pension credit as they will now be extremely likely to lose the entire amount of the premium in charges but the "worked examples" used during the consultation (and indeed also the current charging for care leaflets provided by county to potential service users) fail to clarify this.

6. In effect HCC will now be taking the equivalent of the Carers allowance from disabled people even where they are only providing a few hours of care per week whereas those in receipt of Carers allowance have by definition to be providing a minimum of 35 hours of care per week to qualify.

7. It is impossible to read the original consultation documents without being given the impression that those who will be being expected to pay more would be the people with the means to pay because they were relatively affluent when the reality is that it is those on Income support levels of income who will effectively have 100% of their "disposable" income taken from them.

8. Whilst an albeit flawed consultation was carried out for some of the changes to the so called "Fairer" charging policy no such consultation has taken place with regard to the reductions if funding to key providers of support to disabled people which as recent case law has established is of itself a direct breach of the Disability and other Equality Duties the local authority has.

9. Perhaps the most stark evidence that this consultation and the Equalities Impact assessment were little more than a tick box exercises is that simple fact that the original proposals as included in the consultation have passed into policy with only minor changes to the day to day running of the scheme with regard to appeals but which still do not provide a truly "independent" review other than via a complaint to the Ombudsman.

10. Above all what is evidenced by all the documentation I have provided is that HCC have asked only "Can we do this?" and not asked the question "should we do this?" which should be the paramount concern of local authorities who are charged with helping to redress the disadvantage disabled people face rather than actually make matters worse for them.

N.B. The change in the policy will increase charges for care dramatically, especially for those on benefits, with people like myself seeing an increase in costs from about £35 per week to £55 as from April Fools Day.

Even worse for those current under the supported People Services in sheltered housing or extra care sheltered housing will see an increase from zero now (if they are in receipt of housing benefit) to the full charge of about £50 to £55 per week in one giant leap.

As I said in my "Everest" thread over on Ouch this is a battle I have to fight, even if I lose, because at least then the local authority will know that their actions are being challenged and not simply hidden in this years budget as "efficiency savings" with no mention at all that services are being cut or that disabled people are facing dramatically increased charges and that third party organisations expected to pick up the slack have all had their funding slashed.

For those wishing to follow the progress of the case the case number issued by the Administrative Court at the Royal Courts of Justice in London is CO/1873/2011

Further updates will follow as and when I have more news.

As it says in the Bible: "Go though and do likewise". LOL

Peter aka "Sociable"

"Go placidly..be gentle with yourself..strive to be happy"

But don't take any $hit from either the DWP or your Local Authority. :)