ESA Latest (And More Junk Mail From The DWP)

Spoonies! Another quick update on my ESA/WRAG adventures. 'citing!

So, you're probably up to speed by now, but here's a quick recap. Like many of you I've been moved to ESA from Incapacity Benefit. They sent me that stupid, irrelevant form; you know the one, "tell us how you manage carrying a large empty box..."

I told them very specifically that I believe I should be put straight into the Work-Related Activity Group. After all, I make records, music videos, it would be wrong to say I can't do anything. Lot's of people on ESA genuinely can't work, it would be an insult to those people for me to include myself in that group.

Nevertheless, I face a lot of challenges with my disabilities. I figured WRAG would be able to help me. Sure enough, a prompt reply to my first form told me I would be in the WRAG. After hearing nothing for months, I called the Jobcentre to find out why I hadn't been asked to attend an interview yet. The people I spoke to were dumbfounded; nobody has ever asked to be seen re WRAG, I was assured.

Some months later, I saw an advisor. She explained that I would not be required to attend a medical, as my form must have explained my condition accurately. I explained that it explained very little, only that I had asked to be put into the WRAG, which (I presume) accounts for the prompt decision. I waited months for this interview, remember. Turns out, this interview's primary purpose was to explain to me that I was not required to attend any further interviews, and my ESA payments will continue. Despite the best intentions of the advisor, no real help towards me working was offered.

So, after all that, this amused me.



This explains exactly how much of my benefit will be cut if I refuse to attend the interviews I haven't been asked to attend. Remember, I've been told I won't be asked to attend any more.

Makes perfect sense.

Of course, it's a generic letter. You may have one. But, especially in my circumstances, it's faintly ridiculous.

Here's as far as I've got on making sense of ESA. Help me out on this one, this is all I've got. Based on my experiences so far, I'm thinking that:

A - All of us will be treated with the presumption that, while being fit enough to work, we will do everything we can to avoid this scenario, and will lie and cheat if necessary to avoid working. That's why we need to be warned of the dire consequences in stern letters like the one above.

(but)

B - If, like me, you consider yourself capable of working with the right support, you'll get nothing. There is no support, the process serves only to weed out these imaginary work-dodging disabled people the government keeps telling us about. It's a purely defensive strategy, with no genuine motive to help people. Genuine support is not built into the process, because none of us want to get help anyway, RIGHT?

Too cynical? Your mileage may vary, but I can't see it any other way right now.

ESA Continued...

Okay, so it's been a few weeks now, but I thought I'd better update people on my experiences with ESA.

Just to recap; I've been put in the Work Focused Activity Group, meaning I was told I'd be expected to work. I was put in this group (I think) because I asked to be. Here's my earlier blog post on the first part of the process.

So, I attended the first interview I was obliged to as part of this process. We've all heard lots of heavy language about how WFAG means you'll have to go back to work; the letter I was sent clearly stated that I would be obliged to take steps back to work. Okay then. Let's do this. I was expecting fire and brimstone, and 20+ hours in the nearest Tesco.

Turns out, that interview was the only obligation. That first interview's purpose was to explain this process and confirm that I understood the above.

And then... nothing.

No further obligations, and no help either. My ESA payments have been renewed, they'll write to me in 2014 for another interview.

I was ready to take on this system. I was ready for them to prove to me what was possible, that these promises of getting disabled people back to work weren't empty.

I hope you can see my point here. Many disabled people live in fear that they will be made to do a job they are unable to do. I'm THROWING myself at the system, asking them to send me to work. I'm not well, but I'll give it my best shot. That doesn't matter though. They're not doing anything.

Many people live in fear of being forced to go to do work they cannot manage. Yet when challenged, it seems the system actually doesn't have answers for those of us who do feel able to do some work. Many people have told me via twitter that this isn't surprising. it would appear that if you voice the fact that you don't feel able to work, the DWP put the pressure on. Show ready and willing, and they seem to do nothing.

None of this takes away from the effects my CP has on me. I REALLY struggle a lot of the time, but I sincerely believe I'll be able to do something. It's my personal choice; I don't recommend anyone try and push themselves to do something they don't feel able to. This way of thinking is not for everyone.

To be fair, the advisor I saw was very kind and enthusiastic. Nevertheless, the system she is part of is broken.

The only advice she could offer was for someone with my skill set was to think about working for themselves. That makes a lot of sense. I'm going for it. I can work around my situation, and stick to what I'm good at. I can even earn up to a threshold and still claim ESA for 12 months under the Permitted Work rules, which will help. So, no; I'm not complaining. That works for me. It works for me because I have lots going on that I believe I can get paid for. Not everybody has these options, of course.

Only trouble is, that's me creating my own job if I want one. I don't HAVE to. I could just keep getting ESA until the next assessment. I'm certainly unwell enough, I just wanted to see what was possible.

I can't help feeling that all this talk of offering people "positive steps to the workplace" is the usual vacant rhetoric - when asked for help, they're stumped.

That's NOT a system helping me get back to work.

Having a dog and barking yourself springs to mind.

This is obviously not the case for many people though. It seems that people who live in fear of being made to work are often forced to, while those of us asking for help are getting nowhere. Anybody else? Is it just me? Has anybody had a positive experience with the Work Focused Activity Group so far?

LP1/63

Massive downer on playing live yesterday. It's hard, y'know. Not just because of the music. It's so difficult to just get out there.

I'm not built for it. Humping gear when you have CP is a no-go. Standing on stage often just doesn't work. Venues often have poor access. The list goes on.

The venues thing is a big problem. Most places are accessible to punters. That doesn't mean the places you need to be as a performer are. Last year, I played at an open air event. All nice and easy to get around, until I got backstage. The stage was about six five feet high from the ground; performers were climbing a bit of scaffolding to get on and off the stage. It sucked. It was fucking embarrassingly difficult. Climbing shit is not a good look for me.

Everywhere I play there is some kind of problem. As long as the public accessibility is okay, I don't think anybody cares. Not surprising; when was the last time you saw a disabled person playing a gig? I don't presume for one second I'm the only person doing it, of course, just that, well, you don't see many of us about.

I'm about ready to give up. Seriously. Then, this morning I get an email about a disability issue; specifically one I'm affected by. I can't go into detail yet, but it could be a big deal. That's when I'm reminded; I have to keep doing it, as in I have to go out there and be seen to be doing it. It's too important. I may well die trying, but I have to keep trying. In this context, it's not even about music, it's about being visible.

Visible, and (just about) able.

An Age Thing.

I often give myself a hard time about my age. I turned 30 this year, and I sometimes put myself through the cruel process of thinking about all the great things done by people under 30s. All the achievements of those dead and buried in the 27 club.

But the real problem is this; I don't really feel like a grown-up. I feel young, and very uncertain about the world. But I think I have gotten a clue.

As a person disabled from birth, you don't get to engage in adulthood properly.

Day to day experience often never change throughout your whole life. You're familiar with a concerned adult watching over a toddler. "He's gonna fall over!", "Is he alright with that?" that sort of thing.

That doesn't stop just because you get older, not when you're disabled. I'm surrounded by people making a fuss. I'm always gonna fall over if I'm not careful. I'm always gonna hurt myself. I always won't be able to do that.

I always need help with that.

Sound ungrateful? It is. I don't appreciate the fuss at all.

Trouble is, you try to get on with things. When you can't manage, suddenly your using your disability.

I often feel like it's lose/lose. You're stuck between being made to feel like a child, and being made to feel like you're trying to take advantage of people.

It's hard being young(ish) and disabled. Disabled is something that only happens to the elderly. The angry stares I get in car parks prove that. Yes, I'm wearing a hoody; Yes, I drive a kinda pimped 20-something's car, and yes, I am entitled to this Blue Badge. Please stop staring. There are young people in this country with disabilities, no matter how difficult that seems to comprehend.

This may just read as bitterness to some non-disabled people. Is it just me? I've spoken to so many interesting (young!) people with disabilities via twitter lately; please, share your experiences. It'll help us both...

The Never-Ending Saga Of ESA

Okay, so this post is mainly for the benefit of fellow Sparticans.

Over a month ago I recieved a letter saying I'd been placed in the Work-Focused Activity Group. No medical, presumably because on the form I told them to put me in WFAG. Why did I do that? I'm very able in some areas (as I hope the existence of this website proves) and I hate medicals (who doesn't?). Figured I could save them a few quid on that one.

Since then I've been waiting patiently. I've heard nothing. I decided I'd give the DWP a call. The guy on the phone was very reassuring that I shouldn't worry, and they'd be in touch all in good time... somewhat missing the point of my call.

I'm in the Work-Focused Activity Group. Case closed. Shall we crack on with it, then?

He was absolutely gobsmacked that I was pressing him impatiently as to what happens next. When asked how long this part of the process normally takes, he said excitedly "I've never heard anyone say they actually WANT to go for the interview before!". I was clearly pushing boundaries. A disabled person who wants to work. Imagine. He typed excitedly as I told him that I felt positive about what I might be able to do, and that I wanted support in getting work. Why is this a big deal? They're supposed to be helping us, aren't they?

They're going to call me today. How long would I have waited if I hadn't called them?

My point is this; we're all being made to feel that we're going to be forced to go out to work at the earliest opportunity. Meanwhile, the Job Centre aren't rushing. This could have been months in limbo, had I not pushed them. Is the gap between the ESA claim and WFAG interviews just another place to be left waiting on benefits? If the dwp and the government are so keen to help us work, perhaps they should start delivering on that, yeah?

>>>UPDATED<<<

They just called me back. Apparently if I want an appointment I need to call my local Jobcentre; they don't actually book them. Sorry; if I want an appointment then I need to book one? WTF?

What I Hope We Can Really Take From The Paralympics.

DISCLAIMER: Not Proofed Yet; just wanted to get it out there. Expect rambling, typos and other offences.

It's fair to say that the Paralympics have been kind of a big deal to me. Time will tell, I guess, but right now it feels like it could be life-changing stuff.

I'm not exaggerating. My perspective on disability has been totally shifted by the events of the last ten days. I'm not alone, either. I'm glad to hear from so many non-disabled people that their attitudes are changing too, but for me, the most important thing is how the attitudes within the disabled community could change too. Right now, I just want the whole world to feel as inspired as I do. Forgive me, I'm still so excited by it all. Not everybody shares my enthusiasm, I know.

Not surprisingly, with the word 'disabled' being used so much on television, it's no surprise that some offence has been caused. A common idea is questioning the word itself.

Krishnan Guru-Murthy came under fire last night on twitter for voicing his view that the word 'disabled' seems like it might be redundant, a sympathy that Simon Pegg also shared and was subsequently attacked for. I see the issue here; it may seem insensitive, but I consider the other side of this. When Oscar Pistorius steps onto the track, we are seeing a man whom by any current definition is disabled. Yet, he's at the peak of his physical fitness, and one of the most celebrated athletes in the world. He displays seamingly superhuman capabilities; the word 'disabled' seems so ugly and inappropriate.

Sir Philip Craven, president of the International Paralympic Committee gave an impassioned but controversial argument for why the word desabled should be redundant. Backlash to this idea was strong; many disabled people saw Craven as a 'disability denier'. Cries of "Deny my disability, deny ME!" rang through twitter that evening; a sentiment I cannot identify with. I just don't want to see disability as an absolute ceiling to achievement any more. That's just me, and I'm probably more than a little quixotic. Whatever, I need the optimism right now.

I follow a lot of people who talk about disability on twitter, and I'm saddened by one aspect of the commentary. A lot of people are protesting that we "can't ALL be like that" i.e. "superhuman" athletes. I really feel this is missing the beauty of what the Paralympians have achieved. No, we can't all be athletes, and even fewer people will actually want to, but surely the thing to take from all this is about breaking down preconceptions? I've seen do things I couldn't imagine doing, with conditions similar (and in some cases more severe) than my own.

One worry I do have is that the government will use this as a kind of pep-talk for disabled people, that we should follow by example. That will of course be insincere spin. The government's perception of success for disabled people will surely be just to 'prove' that it's Back To Work initiative works. 'Be like a paralympian, go and prove you can work!" - you can almost gaurantee that this kind of patronizing spiel will come from a Tory very soon...

ESA Bribes & Such.

Right. Quick Q - I'm stuck. I may be way off. Hear me out.

I figure I won't be able to fight this. I'm going to be sent out to work. I want to work. Contrary to popular belief, disabled people generally don't want to live off the state.

So here's the thing.

I think it's well established now that being sent back to work via ESA can mean big bonuses for employers. As I understand it, a work provider can claim up to £14,000 over two years for giving someone like myself a job.

That's a lot of money. That's almost a wage. That's free work, in other words.

I think it's also established that companies like Tesco play a part in this, and profit accordingly. Wage insentives, I believe they're called.

What I don't know, and am trying to establish, is this; who can claim these bonuses/bribes/bungs?

Can a local business give a disabled person a job? Can they take on a person they may not otherwise be able to afford and get this money from the government, or is it all sewn up with big contracts to companies like Tesco?

Lots of companies will profit from disabled people being sent back to work, but my question is, who can profit?

Some of us have skills that are quiet specialised, despite our limitations. You wouldn't want me to wait your table. But I'm really good at a lot of things. I'm obviously not alone on that one. For example, I imagine a scenario where a studio/radio station/wherever could make use of my skills, and take a lower hit financially by getting help from the government. Is this wishful thinking? Can we turn this situation around, and use this money to create opportunities for ourselves, or are we stuck on a conveyor belt aimed at the supermarkets?

I have no idea, and I'm struggling to find anything about this.

If anybody has any clues, I'd love to know. Find me here, or on twitter. That's kris [@] krishalpin.com or @krishalpin.

Dear ATOS; please don't destroy my life.

FYI, all y'all Sparticus types.

I returned my ESA form today. It's a bit ridiculous. Tell us how you need help carrying an empty cardboard box. Tell us what you would do if you got lost. Tell us how you feel when you piss yourself in public. That sort of thing.

The old system is very black and white. If you had difficulties in working, you didn't work. I get why that is not sustainable. Some people could have better lives if they had help earning there own money. ESA is presented as a way to enable more disabled people to go to work, by catering for their needs better.

By looking for the grey area. You know, the bit where they can say "well, you're not DEAD..."

When things like this happen, it's very difficult to trust this government. Atos, the company who undertake the process of reassessing peoples benefits, are unlikely to have people's best interest. A friend of a friend works for the DWP. I'm told that Atos will receive considerable bonuses for each person they declare fit for work. It's big business, apparently. In that case, why would they care?

You know your life? The one they are about to fuck up? Yeah, don't take it personally. It's just business, after all.

Looking After Your Own Again, Cameron?

Remember the Spartacus Report? Remember the key point about simply postponing changes to disability benefits?

That was too much to ask.

Meanwhile...

This is the stuff that you're not supposed to know. Dave and his cronies did recently make changes to a proposed tax increase. On private jets.

Private jet owners were due to begin paying Air Passenger Duty this year. Dave, looking after his own, has postponed the increase until 2013.

This happened last year. I didn't know about it, either. Here's more via the Telegraph: http://www.telegraph.co.uk/news/uknews/8926433/Private-jet-owners-to-escape-flying-tax-next-year.html

That's a year long tax break on your private jet. You don't have one?

The Spartacus Report called for a six month postponement on changes to disability benefits; a chance to review and plan ahead for change.

Are we seeing Cameron's order of priorities yet?

Benefit Scrounging.

Just a quickie.

This is insane. The Welfare Reform Bill is being discussed in the House Of Commoms today; the 12th day of debate, I believe.

I found some unbelievable stuff. A particular favourite is the one about the government wanting to force cancer patients back out to work once their treatment begins. In other words, you're having chemo, you should look for a job too.

Sue Marsh explains the latest better than I can:

http://diaryofabenefitscrounger.blogspot.com/2012/02/vote-with-your-hearts.html

I read something on twitter along the lines that this government is determined to make the poor pay for mistakes the rich made. This is literally happening. We have to keep fighting this. The government neither knows nor cares for the very real fear they are creating in people. Lives will be destroyed by these changes.

England, you're the Titanic.

Why I'm Spartacus.

There's been a million different things that have lead me to this update. It's been a long time coming, however.

Today seems like an important day for this. Today, the government voted against the #SpartacusReport request to pause plans to scrap Disability Living Allowance. Very worrying and disappointing. Clearly the very real fears of disabled people in this country aren't that important.

If you're reading this, you've probably met me in real life. The fact that I am disabled is therefore not big news to you. Cerebral Palsy and Spina Bifida; thank you for asking. Don't worry; you can't catch it. It would leave me wheelchair-bound, were it not for a sadistic routine of almost daily gym visits. Seriously, I'm that ill. Right now, it's okay. Not great. Okay.

If you've never met me, you probably didn't know this. Here's why.

I don't explicitly talk about this on here for one very important reason, the one thing I hold dear as a struggling performer who has a disability.

I don't want to be given a break because of my condition. I reserve the right to be shit.

I think it's safe to assume that the pages of the NME have been largely free of singer-songwriter-performers with CP of late. Let's say I've cornered that particular niche. But to broadcast the fact that I am a disabled performer as if that fact were part of what I do, I'm not so comfortable with that. Not comfortable at all, actually. I can't play the Disability Card. I am always going to be paranoid of getting any kind of leeway because of being thought of as a disabled person 'having a go'. I want people to feel free to hate my music; certainly don't give me any mileage because I'm a bit wobbly*. Maybe it's not an issue, but it definitely keeps me awake at night.

Sure enough, things could go the other way. The casual use of disablist language on twitter shows just how far we are from living in a society that accepts disabled people as equal. Will people disregard my work because of my condition? Would success put me in line for yet more discrimination?

I've been accused many times of hiding the fact; of being very dishonest with this blog. Readers have pointed to the fact that I should be 'real' enough to be open about it. The truth is, it's just not at the forefront of my mind at the moment. Not discussing it is fair, I feel, not dishonest. I'm an autobiographical writer, true, but is everything in my life constrained by my disability? Obviously not. The point of my career is not to be a disabled recording artist. I'm just doing the same thing as everybody else; screwing up relationships, hurting people I love, hurting myself... all that good singer/songwriter stuff. My life is fucked up enough at times, being disabled doesn't change a lot of that. I'm quite comfortable in my outsiderishness, you know. I have no desire to fit in anyway, disabled or not.

I'm digressing wildly.

The issues surrounding the Sparticus Report went some way to pursuade me to start talking about this in more detail. The struggle that disabled people will face due to the government's proposals is immense. If nothing else, I need to stand up and be counted, and for that to be a for a positive reason. After today, it's clear that we have a long fight ahead.

Before writing this, I appealed for advice from Nicola Clark on my unease about 'coming out' with the disability stuff. Nicky has been very helpful to me (and countless others) via twitter, and was kind enough to return my email. She felt very strongly that disabled artists need to make themselves known as such, but pointed out that many (like me) felt nervous about playing 'The Disability Card'. After her gentle encouragement, I felt a teeny bit less terrified by the thought of talking about all this.

Clearly, it's important to people. There are so few role models for disabled people in this country (not suggesting that I would make a good one) that clearly any performer that can use their position wisely really, really must. I know how much it would have meant to me when I was younger, if there had been someone I could relate too on that level, who's work I admired. To think that I could maybe, just maybe, have that influence over another young disabled person; well, that's definitely worth being in the firing line for.

*Not my term; pinched from the brilliant Francesca Martinez.

Spartacus Report Latest.

At least I think this is where we're at.

So; despite Lords voting a big 'no' on three major issues relating to the proposed cuts affecting disabled people, our government is forging ahead in plans to overturn this vote. Good for them.

Right now the important thing is to keep the issue visible. It's not unreasonable; disabled people should be consulted on these proposed changes. That is not the case. The Tories seem to know what they want the outcome to be, and fuck everyone affected, basically.

They can't ignore it if it doesn't go away. Keep tweeting. Keep blogging. The internet is the only place where comment remains free. By stacking the overwhelming evidence against the cuts higher and higher, this government will be forced to rethink. It's still exciting, and it's definitely not over.

Here's a link to Sue Marsh's blog for more on this:
http://diaryofabenefitscrounger.blogspot.com/2012/01/our-response-to-government-today.html

(Thanks to @AzuriteEnigma for kindly linking me the facts on this earlier today.)

Spartacus?

It's a big day on the Spartacus issue, apparently.

I'm so busy today I haven't had chance to look properly. My twitter feed is filled with reports of good news about the report. Life changing decisions have been made today for thousands of people in the House Of Lords. If anybody can point me in the direction of up to date, accurate I'd be very grateful. For now, fingers crossed. Imagine; one of the most devastating proposals a British government has ever made may well have been beaten via twitter...

I (like many) Am Spartacus.

Today is a pretty important day. It may well prove to be a teeny bit historic for many people in the UK.

What's been christened the Spartacus Report (actually the Responsible Reform report) has been published today. This report has been pulled together largely by Sue Marsh, a Guardian contributer who's DLA was recently stopped, despite her debilitating illness.

Disability benefits have been (very quitely) under threat from the current Tory government for some time. The emergency budget of 2010 outlined plans to cut spending on Disability Living Allowance by 20%. What happens to the 20% of people who lose the help they need was never made clear to my knowledge. Changes to carer's allowances were made to ensure that those looking after disabled people would not get the help they need. Particularly alarming was a change that would mean that someone in a wheelchair who could propel themselves would be considered fully mobile.

The Tories are quite skilled at being insensitive to issues of disability. Earlier this year I challenged MP Philip Davies on his comments that disabled people should be willing to accept wages below minimum. He politely reassured me that I "didn't understand" the issue. Only this week our PM has used Tourette's as the butt of an unfunny joke, oblivious to the offense it would cause. By way of apology he said it was a lesson learned in "drowning out the noise of The Commons", rather than learning the lesson that it's important not to be a cunt. I'm digressing wildly.

One of the most incredible things about things about this report is the way it has come about. Sue Marsh (and others) pulled this together themselves, appealing for funding on twitter. The £3000+ needed to get this information into the hands of people who could change the situations was raised in around 24 hours. The issue has exploded on twitter. #SpartacusReport has been the number 2 trending topic in the UK today. There's a petition with over 12,000 signatures already. It's really moving. There's still a long way to go; but if Cameron & His Cronies can ignore the issue after all this, then we're all a bit fucked, aren't we?

Here's the links for quickness:

The report: http://www.scope.org.uk/sites/default/files/Responsible%20Reform.pdf
Today's Guardian piece from Sue Marsh: http://www.guardian.co.uk/commentisfree/2012/jan/08/disabled-people-welfare-reform-sham
Here's the petition: http://epetitions.direct.gov.uk/petitions/20968