Tuesday, 17 January 2012
Last year, I wrote a piece about what life was going to be like for me in 2012. I'm republishing it here with an update after the runaway success of the Spartacus Report campaign which followed on from the Hardest Hit marches of 2011. Sick and disabled campaigners including Sue Marsh, Kaliya Franklin and Dr Sarah Campbell raised money, issued Freedom of Information requests and put their health at serious risk to expose the fact the government had lied, disseminated and abused their own processes to try and force through changes to Disability Living Allowance. Up to 98% of respondants, including Boris Johnson, oppose the change from DLA to Personal Independence Payment.
You can read the report yourself to get the details about money and economics. I'm not good with stuff like that. But I know a lot about life on benefits. That I can tell you about. It's a pretty bleak one and it's been even worse the last few months with a non stop drip drip of stories from the Coalition and the Department of Work and Pensions press office about 'scroungers' and fraud and the twisting of stats and reality to suit their agenda. We sick and disabled haven't just been fighting our usual challenges, we've been fighting for our reputations and our entitlements too.
But last week, the tide started to turn. The Responsible Reform report was the top trending item on Twitter under '#spartacusreport'. The Daily Mail published pro-Spartacus articles. Sue went on Newnight to debate Chris Grayling. The Lords defeated the government on 3 amendments in the House of Lords. The Express is printing unbiased articles about disability. Today's vote on PIP is on the BBC news channel. Flying pigs are not as rare as last week. Things are changing.
In fact things are changing so much that if the Lords cannot pass today's amendment according to this 'test yourself' piece on Benefits and Work, I'll lose my DLA completely. A third of my income will be gone in one sweep of a pen and all the things that add colour to my life to stop it being a picture of simple grey depression will be gone. Along with my very real chance to get better and get back to work. Some people see that as me being demanding, spoiled or the sole cause of the deficit or that most people on benefits are fakers. I think that's horseshit, but my previous post explains it better so it's below:
I'm not going to tell you there isn't benefit fraud. I'm just going to tell you how much it really is. For Disability Living Allowance, which is paid for the extra costs of being sick or disabled whether you are in work or unemployed, according to the Department of Work and Pensions who administer it, has a fraud rate of 0.5%. Yup, 99.5% of people claiming DLA are doing so legitimately. Just like David and Samantha Cameron were when they claimed for their severely disabled son Ivan. DLA helps with the cost of taxis when you can't get on a bus or the extra washing you have to do when you suffer bowel disease or the posher products you have to buy when you have arthritis and can't open things easily or the fact you have the heat on for longer and more frequently when you're housebound. Frivolous stuff like that.
DLA is hard to get. The form is over 30 pages long, takes on average 2 hours to fill out from start to finish and asks about every single part of your life in agonisingly intimate detail. Your words need to be backed up by your GP, specialists and support agencies. It's a major event. And even with those pieces of evidence, there is no guarantee you'll get it. Despite suffering from a combination of bowel problems, chronic fatigue, agoraphobia, depression, panic disorder, post traumatic stress disorder and anxiety disorder and providing eveidence from one specialist, my GP, a social worker, a psychiatrist, two psychologists and my current therapist, I was turned down for the benefit this week and told I don't need any care at any time in the day or night.
But, you say, I've seen you out and about holding court in social settings and seen pictures of the food you cook. You looked clean and immaculatly turned out to boot. You're obviously not that ill really and your benefit decision just agrees with that. But do you really know enough about my life to be sure? Did you know the reason I am early for everything is that I need to allow around 2 hours to get anywhere so that i have time to try leaving the house four times, have a panic attack or stave one off and arrive in time to scope out the whole area so that i can flee the scene at 5 seconds notice if I feel threatened? Did you know that taking the tube or bus places might result in me getting off it or changing seats three or four times because I am so freaked out by certain people just existing in the same space? And that to come and meet you, it's the first time I've left the house all week because the effort of getting washed, dressed into clean clothes that required the exertion of laundry is too much everyday? I, in fact, spent the other six and half days, in the same clothes I also slept in, either slumped on the sofa doing very little or trying to do housework and live my life but having to stop every 15 minutes to use the toilet or because I'm so tired I feel dizzy and the room is starting to spin. Pretty much everything I do is accompanied by gut wrenching nausea. This has been controlled by medication to the point where I no longer boak in bins in the street when I'm out, but is exacerbated by things like eating, bending over and changing temperature like getting in or out of a hot shower. Being sick on myself in the shower is quite my party piece.
Of course you didn't know all that. I didn't want you to know it. I don't want to have answer questions about it. I don't want your pity or your judgement. I don't want your helpful advice. (yes, I have tried hot baths and ginger...) I don't want to be defined by my illnesses. I find my life difficult. Even the basics many of you take for granted are just that bit more monumental for me, so I don't have time to take your feelings about my ill health on too. I also need a break from it all by not talking about it. Plus I'm concentrating on not throwing up on you. And more than anything I cannot bear to be that person you all dread saying 'how are you?' to and fearing a blow by blow symptom by symptom answer. So instead you get the version of me that's held together with sheer bloody mindedness and very strong painkillers. And also, having people around really helps, so it's hard to convey just how bad I feel by myself when you're there.
So if I didn't want you to know all this, why I am posting it on the internet? Well, I'm getting desperate, because the government wants to take my entire income away from me, bully me back into work and beg for my basic human rights with the Welfare Reform bill. They plan to make my migration from Income Support to the new Employment and Support Allowance a Herculean task by declaring Chronic Fatigue an unrecognised illness and not allowing fatigue to mention on the report issued by the private firm Atos who assess you. They also don't allow agoraphobics to be assessed at home and count the fact you made to an assessment on pain of death and destitution as proof that you can't possibly be agoraphobic. You'll also be time limited to a year's receipt of ESA if you have a partner no matter what you have wrong with you, incurable or degenerative (luckily no one wants to even date someone like me). They plan to rebrand DLA as Personal Independence Payment and with one deft change of criteria, remove 20 % claimants in one go and make harder to get, even if you are dying. Housing Benefit will be capped and changed to the point where the sick and disabled can't live alone under the age of 35 or keep a spare bedroom in case they have serious flare ups and need a carer to move in to help. Social Fund payments to help with unexpected costs like the boiler blowing up or having to travel for medical treatment are to be abolished and replaced with food parcels and interest paying loans you have to beg for. Social services for the disabled children and the elderly are being scrapped by cash strapped councils while bins get emptied once a week. Legal Aid for benefits and housing issues is being cut. Libraries with free internet access are being shut as DWP forms are moved to being online only. Welfare advisors are being made redundant and people's eligibility to see them restricted by the closure of Community Mental Health Teams and specialist services. The terminally ill are being told to find jobs and we're all being tarred as undeserving lying scrounging scum not worthy of the gutter and refusing to work for shits and giggles. Not because there's a global economic crisis and only 8% of employers say they'd hire someone on sickness benefits.
Things are stable for me right now, but every single day I wonder if this is the day the postman will bring the buff envelope that starts the process of migrating to ESA. Huge numbers of people with all documented conditions fail the Work Capability Test for this benefit and appeal it. 70% of those people win their appeal after waiting up to 9 months for the appeal to be heard. So instead of changing the test, the government want to abolish your right to claim a reduced rate of benefits while you wait. That would of course stop your Housing Benefit and make it damned difficult to pay the gas bill with invisible money. Every morning when the letterbox clicks, I wonder if this is the day I start the route to losing my home again.
That's terrible isn't it, you think, but what's it got to do with me? Well, firstly, it affects you because if you don't know and love someone who is terrified they are going to end up penniless and homeless under this bill now, you will very soon as your family ages and people's lives change. You might not know just how sick they are as they try to hold onto some dignity in face of ever enquiring forms and doctors but you do not get to judge. You might not think they are deserving, but it's not up to you. Same way as I don't get to tell you to sort your credit card out and discipline your bratty kids even though I think you're doing it wrong on both counts. You don't have magic X ray vision or you'd probably get paid more at work. Secondly, it says a lot about a society by how they treat the most vulnerable in it. And thirdly, you're telling me that if you agree with this despite your oh so fashionable disdain for the Daily Mail and the Sun, you're swallowing their propaganda without a moment's thought or attempt to educate yourself. Fourthly, you're also telling me you think you're better than me. You'd never get sick or disabled or ill or old or have an accident or anything weak and icky like that. And lastly, you're paying your National Insurance every week to allow you to use the welfare state and you'll notice that while they are getting rid of the services it provides you aren't getting a rebate. You're being ripped off and encouraged to think about private health and lifestyle insurance. Doesn't that piss you off?
The Welfare State does need reformed. It needs to be well informed and fair. It needs to stop propping up employers who don't want to pay a living wage. It needs to address the taper of rate that means people lose between 65 and 95 pence in the pound they earn when they come off benefits. It needs make part time work more viable. It needs to stop making sick people sicker. It needs to stop paying families on 50k pa child tax credits while the single and childless get nothing if they earn minimum wage. It needs to deal with Buy To Let landlords who want to get rich off high rents that cost a fortune in HB and mean their own family home is worth more while Housing Benefits tenants live in squalor. It needs to stop conflating fraud and error figures to make it look like people are cheating the system when the majority of incorrect payments are due to DWP fuck ups. It needs to stop energy companies taking 25% of your benefits before you even see it to pay fuel arrears and putting you on pre-payment meters. It needs to look at the inequalities it creates where single parents can get free prescriptions while MS sufferers can't or the families of disabled children can't afford to heat and eat while rich pensioners get £250 minimum Winter Fuel Allowance because it isn't means tested. Unfortunately, the government is only doing the last one and that's by scrapping the payment not looking at making it fairer. The rest of their policies can be summed up as moving the deckchairs on the Titanic and pointing the finger at the vulnerable and blaming them for the iceberg at the same time.
No one chooses to get sick or develop a disability. I'd much rather have even minimum wage than my £91 a week and the finger of blame and shame that comes with it. I'd sell my soul to Satan to be fit and healthy, even though it wouldn't make up for the fact I cannot count the number things important to be that ill health has spoiled in the nearly 20 years i've been sick. I refuse to get self pitying and slump further into depression over it. Instead I plan to try and draw attention to the unfairness of it all. Righteous indignation and the desire for justice keeps me warm on long cold winter days of ill health. I never did see a cause I didn't want to take up, but I hope you'll join me when I run out of spoons. Adopt a Lord, write to your MP, donate to a food bank, fight for Legal Aid, buy a friend a cup of tea when they have benefits issues and please please please, stop assuming you know who's really in need or not. The harder you make me fight to prove I'm 'deserving' the more energy you take up that I could be using to get back to work and off benefits...