This one goes out to every prat MP and commentator who says we must keep hacking away at social security until there is nothing left to cut. I like to think this story will remind those people about some of the crap that disabled people have to put up with as they take the brunt of cuts:

Video: I didn’t have a carer and I was so thirsty I went to Asda at 5am in my wheelchair to get a drink with a straw and help

A week or two ago, I again accompanied Angela Smith of Wembley as she travelled to her jobcentre and work programme appointments in her wheelchair. (I first went with Angela to Wembley jobcentre about a month ago). Angela has a master’s degree and worked for about 20 years in policy and disability support until she was made redundant in a couple of years ago. Angela has cerebral palsy. She must sign on once a fortnight at the jobcentre and once a fortnight with her work programme provider, which is the Reed Partnership in Harrow. She uses public transport – the bus – to get to both places.

So. When I arrived at Angela’s house before we set off to Wembley jobcentre, Angela told me that she was very tired. There was a reason for this. She’d woken up very early – at 4am – because she’d been very thirsty. There was a reason for this, too. Angela’s afternoon carer had been off sick the day before, which meant that Angela had not had anything to drink since 2pm the previous afternoon. She finds getting a drink for herself very challenging: the involuntary movements of her head and arms makes co-ordination and turning on the watertaps difficult. Her afternoon carer usually leaves her something to drink, but didn’t on this occasion, because she didn’t come to work. So Angela woke up at about 4am, thirsty. By about 5am, Angela was so thirsty that she decided to get out of bed, climb into her motorised wheelchair and travel down the road to the 24-hour Asda to buy a drink. She said that staff at Asda helped her – “they are very nice over there.” Angela showed me the receipt from that excursion – you can see the date and 5.14am time stamped on it:

Receipt from Asda 5.14am

You see where I’m going here. This is the sort of reality that disabled people get to enjoy while career twats like George Osborne, Chris Leslie and Andrew Rawnsley blather on about social security cuts being an unavoidable fact of modern life. They leave disabled people in a dangerous position indeed. I asked Brent council for a comment on this Asda situation and on Angela’s care and the council’s care and cover systems generally. That was about ten days ago and I haven’t heard a single thing back. I understand that the council has since had a meeting with Angela, but a response this way would be welcome, too. Angela is embroiled in an ongoing battle with the council about care services. The whole thing is a complete mess.

I’ve seen plenty of correspondence about it. Angela doesn’t like the agencies the council uses, or some of the carers that agencies send. She doesn’t like the restrictions placed on her direct payments spending (this is a point that several disabled people have raised with me recently). She has made formal complaints. The council argues in its correspondence that it makes adequate provision to cover care and that Angela could hire her own carers with direct payments. Angela’s point is that she doesn’t want cover from agencies that she doesn’t trust and that it’s hard to hire good people in an ongoing way when you only have a small amount of hours and money to offer.

The upshot of all this is that Angela’s younger brother is now her carer, more or less. He has been coming around in the morning to get her out of bed, washed, dressed and fed. He’s certainly been there most mornings when I’ve visited. It may be that sometimes, family is easier to negotiate, or work with or rely on. I’ve fed Angela breakfast on days when her brother has had to leave early. I fed Angela lunch on the day of the 4am Asda journey, because if I hadn’t, she would not have had lunch that day. Continue reading →

Callout from Disabled People Against Cuts:

“We are slowly coaxed to believe we are too expensive to keep alive and it’s kinder if we are convinced to die.” (From an article Penny Pepper and I did last year on the government’s attacks on disabled people).

The future of the Independent Living Fund – the fund that severely disabled people use to pay for extra carer hours so that they can live independently in their own homes – will be debated in the House of Commons for the first time this Wednesday 18 June from 11 to 11.30am.

As many MPs as possible need to know this is happening and will be there to stand up for the ILF and the future of independent living support for disabled people.

The fight for the ILF is far from over.

In March, the Minister for Disabled People Mike Penning announced a new decision to permanently close the ILF in June 2015. He did this despite a ruling by the Court of Appeal in November 2013 which quashed this government’s previous decision to close the fund.

Last week ILF recipients launched a fresh legal challenge which you can read about here.

Meanwhile, #SaveILF supporters have been busy contacting their local councillors and MPs collecting sign ups to the campaign statement and spreading the word with the brilliant ILF postcard campaign: www.facebook.com/ILFpostcard

One supportive MP Nic Dakin MP for Scunthorpe has managed to get a debate on the future of the Independent Living Fund for this Wednesday: 18 June 11 – 11.30am.

It is only half an hour, but it is the first time that the ILF and the fundamental question of the removal of disabled people’s right to independent living which its closure represents, has had a debate in parliament.

This is an opportunity to make sure politicians know what the ILF is and why it is so important.

We need to take urgent action to write to our MPs, urging them to attend the debate, telling them why it matters and most importantly sharing your stories and experiences that show why we need not only to keep the ILF open but to reopen it to new applicants.

You can find your MPs email address and post address here.

Here is a briefing about the ILF you can download and send them as an attachment. ILF briefing 13 June 2014 (this link opens the briefing).

If they can do it in Scotland, why not here?

See Disabled People Against Cuts for more.

ILF recipient Penny Pepper on the threat to the fund:

“There is this bizarre idea coming our way that you can eat sandwiches, lie in bed and use incontinence pads. If that happens, then that is, in effect, the end of my career. The basic idea of having a separate pot of money like the ILF did give you choice and control. Now, we’re being forced backwards into having to go on about how pathetic we are as individuals – you know, with your poor legs and your this and your that. The idea of choice is being narrowed and narrowed and narrowed. If the council ever tries to put me in a care home [because it cannot afford to fund independent living costs ] I will take it to court.”

“I need support to do most things of a physical and practical nature – from getting out of bed, using the bathroom, getting dressed and food preparation to moving from A to B, getting into my wheelchair and getting out of my wheelchair. I would not be able to work without that funding. This is what is terrifying to me.”

To Clacton-on-Sea, where I spent a day recently setting things up for a longer project – more on that in the coming weeks.

For now – a few transcripts and a bit of a rant.

When I was in Clacton a couple of weeks ago, I went to the CAB and spent some time with officers there. I also stood outside the jobcentre for a while, to see I could find anyone who was prepared to speak about JSA, sanctions and work experiences in Clacton.

We talked about those things and then generally about the people they hold responsible for tough times. I find this part of things interesting, especially in our burgeoning We Hate Europe era. I spend most of my time talking with people who have been badly hit by public service cuts, job losses, wage cuts, insecure work, etc, and they come from a very wide range of groups. The thing is – people don’t talk to me about European politics very much, or certainly haven’t in the past few years. Not spontaneously. Not as the first thing out of their mouths. I don’t think I’ve ever heard anyone mention their MEP to me. Maybe people need prompting. Maybe that will change as politicians and the press keep belting out the anti-EU message. I do hear anti-immigration talk and that usually has to do with the housing shortage – who gets housing and why, who should be prioritised for it and who is being prioritised for it. The point I want to make, though, is that I still notice people talking about the failures of the local political class, which you’ll see in the transcripts and quotes below. They talk about their immediate tormentors.

I’m guessing that it suits local politicians better to paint this part of the picture out. It’s still there, though. That needs to be said. People still talk a great deal about greedy MPs and bankers and bonuses, Iain Duncan Smith, jobcentre staff, organisations that run the work programme and companies that employ people on wages too low to live on. People make these points unprompted.

There is absolutely no doubt that this is why the political class is so desperate to turn our attention to Europe and immigrants, and why Labour is prepared – this still floors me, although it shouldn’t – to fanny around with fascism and to talk about controls instead of leading any global charge for equality. It is perfectly clear such a line is thought more expedient than taking responsibility for the fact that we’ve reached a point where a few people have everything and most other people have stuff all. We can add to this perverse picture the fact that the people who are trying to tell us how things should be are in no position to. I mean – we’re hardly going to have a balanced dialogue about distribution while people like Yvette Cooper are involved in it (I’ve just read her latest watery “article” on immigration, which is why I’m thinking about her. I usually try not to). Let’s face it. People like Cooper are not well-placed to join the rest of us in pointing the finger at MPs who milk expenses, to take an example. Which is a pity, because a lot of people are still very upset about things like MPs’ expenses. Very upset indeed, as you’ll see from the quotes below. I am not much of a strategist, but even I can see why someone like Cooper would find it much easier, and much less compromising, to rattle on about controlling immigration instead of addressing the monumental equalities crisis in which she and other politicians are implicated.

This is the sort of thing that people say to me a lot – I’ve pulled out some quotes from my articles from the past few years:

“People like us are screwed to the ground. They’ve legalised bullying. They wear suits….They’re getting away with it. It’s the fucking bankers that ought to be done for it….They’re pointing the fingers in the wrong direction.”

“The government don’t give a shit about the people. Just their friends. They’re given massive tax breaks and they’ll never spend it if they live for another 100 lifetimes. You got people at the other end who can’t even afford to put their heating on and buy some food. They’ve got to be the biggest bastards ever on the planet. They’re not kings. They don’t look after their people.”

“The expenses, you know, that some people are claiming for pornographic DVDs…. Just got no respect. The kids have got no respect now. [Leaders need to] lead by example. Right now, they’re making it up.”

You see my point. A lot of not-rich people understand that the political class wants to flush them like turds. They’re not too happy about it. Little wonder that politicians are falling over themselves to direct that anger elsewhere.

Anyway.

I’m an EU immigrant myself, so may be forced to take a break from all this soon to pack for Dublin (am here on an Irish passport). Before I go – here’s a bit more on the sort of crap that people have to put up with from the political class, as opposed to immigrants:

It’s a Tuesday afternoon and there’s a group of older guys standing outside the Clacton jobcentre on Station Road. They’re lining up at a side door, waiting to be let into some work training thing or other. Nobody seems to know exactly what they’ll be doing at the training, or why. All they know is they have to be there and that they have to line up at this locked door like they’re six and waiting to be let into school.

The first guy I talk with is an older bloke with white hair. We don’t talk for long. He is furious about Universal Jobmatch. “The worse thing I ever done is looking for a job on that computer,” he says. “It’s a waste of time. I’ve looked for about 1500 jobs on it.”

The second guy is Mark*, 45. He’s been signing on for five months. Before that, he worked in caravan parks and as a printer. He’s trying to retrain because “for the last 30 years I’ve earned my living through hard manual labour. I can’t do it now, because I’m 45 and I’m tired. That’s why I’m taking myself to school.”

He says:

“There’s about 468,000 jobs across the UK, yet there’s two and a half million people unemployed, so if them jobs was filled tomorrow, you’re going to have two million people going to the jobcentre, fighting over them. But they don’t tell you that. You have to search and find out yourself. You go onto Universal Jobmatch and they monitor it. They can see what you’re doing, because you give them a government ID number. It’s effectively a virtual chip. They can see all your job search that you’ve done to look for work. I think that what they’re forgetting about is the miseries that they are causing.

Continue reading →

From Disabled People Against Cuts:

MHRN and campaigners outside Royal Courts of Justice

The Mental Health Resistance Network, supported by Disabled People Against Cuts, wil hold a vigil at the front entrance of the Royal Courts of Justice on Tuesday 8 July 2014 at 12 noon to 2pm to highlight important issues around the Work Capability Assessment Judicial Review for Mental Health Claimants.

Two years ago, two people who claim benefits on mental health grounds initiated a judicial review of the Atos Work Capability Assessment. The two people were supported by the Mental Health Resistance Network. In May 2013, the judges presiding over the case ruled that the WCA places mental health claimants at a “substantial disadvantage” and that the DWP should make “reasonable adjustments” to alleviate this.

Often mental health claimants struggle to provide further medical evidence to support their claim for Employment Support Allowance (ESA) and may not be able to accurately self report how their mental health conditions affect them – either when completing forms or at face to face assessments. Many claimants are wrongly found fit for work and subjected to the stress of appealing the decision. Continue reading →

Here are videos from the DWP on Monday, when Disabled People Against Cuts blocked all building doors to protest at Mike Penning’s disastrous plan to close the Independent Living Fund.

The Independent Living Fund is used by people with severe disabilities to pay for the extra carer hours they need to live independent lives and stay out of carehomes. Because they have personal assistants available most of the time, ILF recipients have the support they need to work, study, socialise and generally get on with life like everyone else. Without that money, people will be forced to rely on the council social care system – a system that has been, as we all know, utterly decimated by government cuts and can’t meet demand as it is. There is absolutely no way that devastated council social care departments will be able to pay for the round-the-clock, high-cost care packages that many ILF recipients need – certainly not in an ongoing way.

ILF funding is actually used by many people to top up existing council care packages – that is certainly the case for most of the ILF recipients I’ve interviewed. That’s because these care packages are expensive. Penning can whack on all he likes about keeping a safety net in place for disabled people, but he knows and I know and everyone knows what the future holds for ILF recipients if the fund is closed. People with severe impairments will be shoved into carehomes (that’s assuming spaces are available, which I would not assume), or stuck at home in incontinence pads and relying on fractured council care. If they’re lucky. I’m already speaking to disabled people who must spend a great deal of their time fighting their local councils for care (this woman is one of those people – more on her story soon). I’ve already spoken with people who must spend their weekends in bed because their council-funded care packages don’t stretch to cover Saturdays and Sundays. Continue reading →

Second story with Angela is here: Disabled and without a carer overnight? Go to Asda!

—————-

Right. A bit more on the realities of George Osborne’s ironically-named “Help to Work” scheme and this government’s useless Back To Work concepts generally:

The woman in these videos is Angela Smith, who lives in Wembley. Angela worked for about 20 years and was laid off from her most recent job (working with young disabled people) in 2011. She signed on then. She has a university degree.

Angela also has cerebral palsy. She uses public transport to get around and to attend her fortnightly signing-on days at the Wembley jobcentre and to see her work programme provider at Reed Partnership in Harrow. At the moment, those are her two obligations. She describes both of these days as a complete waste of time. Having attended one of these days with her last week, I see her point. We travelled all the way from her house to the Wembley jobcentre on the bus (an almighty drama, as you’ll see in the video below) for a 15-minute wait and five-minute handing over of jobsearch papers. That was it. Angela took a folder of paper for a bus ride to the jobcentre, dropped it off, and left. There was no discussion of jobsearch while we were there, no offers to help find work, or to fill in application forms – nothing. I said it before and I’ll say it again – this jobcentre process is beyond Kafkaesque. People are made to turn up to jobcentres to show evidence of searches for jobs that don’t exist, or for which they are unsuited, or unlikely to hear anything of again, and then they leave the jobcentre – often to do the jobhunting that they had to put off for a couple of hours to attend their pointless signing-on session at the jobcentre. It really is a pointless exercise to beat all.

With Help To Work, people who have been long-term unemployed must take part in that pointless activity every day. They either must travel in to sign on at their jobcentre, or participate in workfare schemes. Angela has been out of work for two and a half years, so has some concerns about the scheme and how she’ll get on if it applies to her if she’s still unemployed after three years. With that in mind, she wanted to show what her trip to the jobcentre already looks like. She finds it a challenge and you’ll see why in the videos below. I accompanied her to the jobcentre last week on London’s so-called accessible public transport.

It went like this:

Bus trip to Wembley jobcentre

It was raining, which meant the bus was crowded. There were two buggies in the wheelchair space and nobody offered to fold theirs, so Angela had to sit in the doorway in her wheelchair – hardly ideal, as you’ll see. Then, things escalated – par for the course in a crowded bus with space taken up by buggies. One of the people with a buggy had to get off the bus before we got to our stop. Angela pushed the button to call for the ramp so that she could get off the bus, make room for one of the people with the buggies to get off and then get back on. Unfortunately, the driver didn’t realise all this was going on and he shut the doors on Angela’s foot as she tried to get back on. When she did get back on, he came over to remonstrate.

He asked Angela what she’d been doing – and then he did something that people often do when dealing with disabled people. He asked Angela who she was with (the assumption always is that disabled people can’t be out and about by themselves) and when he worked out that Angela and I were together in some capacity, he started to address his questions to me. He asked me if Angela was all right. I told him that it was probably better to put that question to Angela, seeing as it was her foot that got stuck in the door. He said to me – “but is she all right?” I told him again that Angela was probably best placed to answer that question. He asked me again. I told him to speak to Angela. This went on for some time. He was obviously worried that there’d be trouble because of the foot incident and he needed confirmation that there wouldn’t be trouble. He seemed to want that confirmation from someone who wasn’t in a wheelchair. Bit of equalities training needed there, I think. Boris Johnson, our very own self-styled Mr Accessibility, might want to get onto that.

After all of that, we finally got to the right stop and headed for the jobcentre. The meeting we had there was pointless, as I say. We waited for about 15 minutes for someone to see Angela. The man who saw her was pleasant enough, but he didn’t say too much about helping Angela with her search for work. He just took up her papers, had a quick look and then told me that Angela would need to fill in the space for her email address. I’m not sure why he told me. I told him to talk to Angela about her papers. Angela explained that she isn’t able to physically write (she uses her computer) and so couldn’t fill in the box for the email address by hand. She said she could read her email address out for him. He said it would probably be best to do that with another adviser at another time. And that was that. Then, Angela went home start work on a job application she’s writing. Interesting that she had to get her trip to the jobcentre out of the way before she could get down to applying for a job.

As Angela says in the video: “Imagine doing that every day.”

Indeed.