Spartacus Stories

Elaines story #spartacusreport #spartacusstories

2012-01-18T17:00:00.000Z

Dear

Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.

Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.

I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.

Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?

The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.

I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.

Kind regards
Elaine.

Kirk's story #spartacusreport #spartacusstories

2012-01-18T16:30:00.000Z

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I am another one lucky enough not to be in a terribly bad way, yet bad enough that working is not possible or at least very unlikely. I had always been a competent and capable person in work and sport. I was accustomed to succeeding in anything I chose to do and at work had risen to quite a high level. Approaching the age of 50 though work stress started taking a toll and I became psychotic which led me to become suicidal. A friend had recently started treatment for cancer but he drank himself to death before the cancer got him. This seemed an easy way to go so I started drinking with a grim determination. Within 2 years I was close to succeeding but was persuaded to visit some friends for a break who made me go to see a GP and was booked in to a hospital.

I had to temporarily stop drinking and found I was no longer committed to killing myself so I stopped drinking completely and started getting better. 6 months later I had an attack of encephalopathy which is when fluid builds up in the brain and puts pressure on it. This the brain does not appreciate and some brain damage is inevitable.

The problem with having a damaged brain is the person affected does not feel as if there is anything wrong. I know that 1 year ago I was convinced I was thinking completely rationally yet when I look back at some of the plans I was making they were completely unattainable. Now I think I am perfectly normal but how can I be sure when I thought I was normal 5 years ago and I now know I was as crazy as a very crazy man indeed. Even when I was hearing voices I made what I thought at the time were perfectly rational explanations.

The encephalopathy resulted in short term amnesia and long term locomotor ataxia, poor attention span, poor sense of balance and chronically poor memory. I also find it very difficult to deal with stressful situations and avoid speaking to strangers on the telephone if at all possible. My friends all complain that I don't answer the phone and I normally manage to forget to take my mobile if I leave the house.

I used to be quite well off but when I got ill I spent all my savings. It never occurred to me to claim unemployment benefit until I was discharged from hospital. I was asked where I was going to live and I answered I did not know as I did not have any money. The CAB and local council helped me out for which I am very grateful. Now I live very simply and am quite happy.

My ESA and DLA claims were or course turned down after I had seen the ATOS doctor who scored me 0 and he thought I might get a job as a 'Red Driving School' instructor. He was not in the slightest concerned that I could only get down onto and up from my knees with the use of a chair and had not yet relearned how to write with cursive script but could only use block capitals. My CAB representative filled in the appeal forms ( I was incapable of doing it myself ) and luckily having been in hospital for 3 weeks I had no dignity left so didn't mind answering all those personal questions truthfully. I won the ESA appeal and was awarded Lower Rate Mobility on the DLA appeal although my CAB representative was disappointed I was not given the Higher Rate Mobility.

I still fall over most days, sometimes several times a day but normally at home where I fall against a wall, chair or bed so do not hurt myself. I have only had one bad fall outside when I had to go to the A&E. Of course I am worried about 2013 when I am due for a review and I am still unsure what being in the work related group for ESA will actually mean for me.

I am, of course, Spartacus

Rose's story #spartacusreport #spartacusstories

2012-01-18T16:00:00.000Z

I don’t have a blog, in fact truth be told I’m only now really taking part in Social Networking and finding it amazing. So bare with me for my part in #spartacusstories.
I am a Polio Survivor, I was 18mths at the time. There are more Polio Survivor’s than there are people suffering with Parkinson’s Disease. During our rehabilitation we were given Physio to strengthen weakend muscles, with the aim of discarding crutches/sticks/calliper’s and wheelchairs wherever possible. We all worked hard, many like myself at age 16yrs were discharged from NHS with no ‘aids’ and told to go out and get on with it, forget your ever had Polio.
I did this, joined the workforce age 16, got married in my 20’s, had 3 children, continued to work throughout.
I applied for DLA the first time about 12yrs ago, I was refused the first application. Despite knowing myself that my condition was deteriorating, it was another 2yrs before I re-applied, this time with the help of a friend who was also a WRO, she also had an aunt who was a Polio Survivor so fully understood that things were getting worse. I have now been in receipt of DLA for 10yrs, this is used to pay for a car, which I was dependant on then but am even more dependent on now. I was given it ‘indefinitely’ which I believe replaced the ‘for life’ award.
If I lose my DLA I will lose my independence, something I have fought for everyday for the past 50yrs. I will be trapped at home as walking any distance will bring on fatigue,brain fog, pain; public transport is also pretty useless because by the time I get where I need to go I am totally exhausted. Hospital appointments would take a 2 bus trip, but I can get there in 20mins by car avoiding much of the exhaustion and pain.
Polio has always been recognised as a neurological disease, but what many of us with polio know and many in the medical profession still have trouble knowing, is that many years after getting polio, something can trigger a condition very similar to ME or Chronic Fatigue Syndrome or even Fibromyalgia and includes the worst of those conditions including general fatigue, brain fog, memory problems etc.

It is known as Post Polio Sequelae or Syndrome. (PPS) On top of that, parts of the body that were apparently unaffected by the original polio, in my case your arms and other parts of your body, are now much weaker and attracting osteo-arthritis and getting worse every year

Can I just state, for the record, I am 52yrs old, I contracted Polio 1961, unusual but not unheard of, I was not fully immunised at the time. There are a few of us who are of ‘working age’ some will be migrating from IB to ESA. Me, I had to give up work 18mths ago as I could no longer cope, even though Access to Work had implemented all the aids they could for me. My ESA(CB) has run out and I have just been through WCA to see if I am ‘fit for work’ I am awaiting the results at this time.
As a community Polio’s have kept themselves pretty ‘closed off’, only speaking to other survivors for fear of ridicule and bullying which, sadly, happened a lot, especially to those of us in wheelchairs, using callipers/sticks etc. I feel that I have to speak out now, no-one else seems to be. As I have already said there are more than a few of us of ‘working age’, we have worked, we are now reaching a point when it is the body that is ‘giving up’ due to the overuse/misuse during our time we had our ‘normal’ lives. We are now having to accept the fact that we are disabled, the fact that was ‘drummed’ out of us as children that we were not and in fact ‘lucky’ we survived. It’s very hard to watch myself slip away like this, it’s the same for other’s. Myself and a couple of other’s have joined this campaign because we thought it was right, a real effort was made on our part to encourage other members of our community, did we succeed ? I have no idea as there was no response to our posting on forums/facebook/twitter.
So there you have it, it has taken me 3 days to write this down, it’s been an emotional rollercoaster, I am still coming to terms with what I am discovering is going wrong with me.

Steves story #spartacusreport #spartacusstories

2012-01-17T23:00:00.000Z

I made a claim for DLA 6 years ago. This was based on my 32 years of agoraphobia .... now severe. My claim was totally dismissed by the DWP (simply by ignoring what my GP wrote and stating that I was okay) and after three unsuccessful attempts I appealed in 2008. When they first totally rejected my application I started to believe that the DWP must know what they are talking about, so maybe I was okay ... then I realised they had employed inexperienced people who knew nothing about disability (but were probably on targets to achieve refusals) or were lying.

The first stage of my appeal was a 'medical examination'. What a farce! I met a retired GP who knew nothing about agoraphobia, who spent a long time telling me about his career, asked me (an Honours Graduate) stupid questions such as who the Prime Minister was, did some arm wrestling and knee-jerks reactions (for agoraphobia?????) and reported to the DWP that I was okay because I was not scared when there was the sound of drilling from the next room! I cannot understand how a man of such low-intelligence became a GP but I can fully understand why the DWP employed him as a 'refusals man'. And I realised that he had a very nice retirement job and could not afford to lose it and the huge sum of money he no doubt 'earned' by allowing too many claims; he had to refuse most to retain his job, I assume. The system was designed to minimise the number of successful medicals.

I then appealed and went to a Tribunal. Literally a FEW minutes before I entered the Tribunal the representative for the DWP told the Tribunal that she had to leave on urgent business but that the DWP conceded I should be awarded DLA. So for three years they rejected me by telling lies but when faced with having to explain themselves in front of intelligent members of the Tribunal, they could lie no more. And could not face me either.

The whole process was a sham, with the sole intention of preventing me (and others, of course) from being awarded DLA. The Tribunal awarded me Mobility allowance (which I had claimed) and also Care allowance (which I had not claimed) and gave both indefinitely. I think they added the Care Allowance to demonstrate to the DWP that my case was serious and that the DWP's stupidy had resulted in a higher figure being paid out than if they had accepted my genuine and modest claim in the first place.

I had assumed I would never have to go through that ordeal again but it now seems I will. And they will make life Hell for those who dare to claim.

But I note that no similar ordeal has to be experienced by the bankers who caused the financial problems and have since been awarded billions in bonuses.

The ill, weak, vulnerable, elderly and disabled (not friends of the Tories) need to stick together to avoid being down-trodden by the government's desire to punish them for the transgressions of the wealthy (the friends of the Tories).

Julie's story #spartacusreport #spartacusstories

2012-01-17T22:30:00.000Z

Hello, here's our story to publish if it's any use to you:

My son was diagnosed with autism when he was two years old. At that point, hewas only able to eat custard, because it was both yellow and smooth. Hecouldn't tolerate anything touching his lips, so I had to carefully feed himhis drinks on a tea-spoon. Meal-times took between two and three hours.

He couldn't stand in queues, so going shopping was a nightmare. As asingle-parent I had no choice but to take him with me. He would lie down on thefloor and sweep his arms and legs around. That kept him calm, but if therewasn't any room for him to do that he'd have a melt-down, screaming and crying.I lost count of the number of times I was accused of being a bad mother bymembers of the public. Our local post-office banned us from the premises - whenI tried to explain he was autistic they didn't believe me.

At bed-time everything in his room had to be just so, or he'd have a melt-downand be unable to sleep. The curtains had to be open two feet apart, no more andno less. All the drawers had to be shut tight. Each and every toy had to be inthe right box and each box had to be in the right place. Several times I wokeup in the night to him screaming like he was being murdered - but it wasbecause his shoes were the wrong way round on the floor.

He was terrified of showers and couldn't cope with sitting down in the bath. Hecounted drains in the street obsessively, amongst other things. He wasterrified of drills, sirens, and other loud noises. He was also frightened ofdogs, other animals and insects. He had no sense of danger and struggled tocommunicate with others, especially children.

As he's gotten older, with the help of some fantastic teachers and therapists,things have improved. He eats and drinks normally, comes shopping, sits down inthe bath and his room is a tip like any other child's his age. He's even inmainstream school now, and, with help, is doing well.

But he can't go outside on his own. He tells complete strangers his name, age,address and other personal details, not understanding why that's dangerous. He thinksthe staff in the supermarket are his very good friends because they speaknicely to him.

He walks out in front of cars, 'performing' looking both ways rather thanactually doing it. He's still so terrified of dogs and flies that he leaps outinto the traffic to avoid them - I've pulled him out the way of an oncoming carmore than once.

He's been attacked several times in the play park by kids who don't know he'sautistic and think he's 'weird'. Since he moved to mainstream school he's hadongoing problems with bullies.

He needs a carer, and while he continues to get DLA, that carer is me. If thegovernment's plans go ahead and we lose the DLA, we'll also lose my Carer'sAllowance and our Income Support. I'll be moved onto Job Seeker's Allowance andwill have to take the first job that comes up - even though there's nochild-care.

The last time I was at the Job Centre (I have to attend Work FocusedInterviews) I asked my advisor if there was any suitable child-care at all thatshe knew of, because I'd like to get off benefits and at least work part-timeif I can. Yes, she said, there's lots! Then she pulled out her big file, openedit up and found...nothing.

My son is due to have his DLA reassessed this year. The doctor says he stillneeds it and will support our application. With the government's cuts though,who knows what's going to happen to us? I'm waiting in terror for that bigbrown envelope to come through the door.

Carol's Story #spartacusreport #spartacusstories

2012-01-17T22:00:00.000Z

I am a Mam, Gran-ma, Sister, Friend, Mischief maker, Auntieand a whole host of things ( even a tw@t at times) I am 55 years old, though tobe honest Ive never really grown up, and thats the way that I like it. Right,thats the meet and greets done, OH , hang on , I forgot to say this also, I amdisabled and I am most certainly Spartacus.

I was born disabled , with club foot in both feet ( the posh name beingBi-lateral Talipes ) and with one leg shorter than the other ( allthough now ,the dispute now , is which leg is the shorter as Ive lost at least an inch inheight ( sorry I still do old English measurements, except strangley for drillbits where metric does just as well).

I wnt to school throughout the 60s and early 70s bumbling along as you do andgetting by. I got married and had two gorgeous kids, best thing I ever did. Istayed at home to look after them , and went back into education, to get studyfor a degree, to improve my employability ( I graduated in 2000 ) Throughoutthat time I recieved no state support of any kind, then I applied for therelatively new benefit called DLA ( introduced by the Conservatives) I wasgranted HRM because of my mobility issues , but not granted and personal care,and was even turned down at two other applications, so I left well alone, andgenerally bumbled along in life, trying to find work, and either being toldthat I was far too qualified, or didnt have any experience. Ho, hum.

Anyhow, I joined a cardmaking forum, oh maybe 5 years ago ( bear with me peoplethe good bit is coming honestly) and made plans to visit a friend in Hull for afew days. So off I went to meet my friend. Everything went well, I was due tocome home on the Tuesday ( 7th April) , so we went as my friend put it "Strolling along Hessle Road ". . . . . .

BANG - Down I went. My foot had caught the footplate of an oncoming chair beingpushed by the incumbents carer. I had steped sideways to let them pass. Mywalking stick went heaven knows where, and Im lying outside a pharmacy inHessle Rd, experiencing the most excruciating pain ( apart from the day I hadmy children, sorry kids).

The ambulance was called. I was xrayed, examined and admitted to Hull RoyalImfirmary (btw, I live 192 miles away from Hull in Cumbria) . Doped up to theeyeballs, to try and stop the pain, a Doctor came to the bed and explained thatI had fractured my left neck a femur ( or as my friends say snapped her hip)and it would need at the very least 2 large Thomson screws to keep the bonestogether . ( oh and my friend ? The one I visited - She worked in the damnhospital !!)

My mobilty ? HAHAHAHAHAHAHAHAHA! My personal care ? Has gone to rat-crap. I nowcannot walk down the stairs as I used to. I have to walk one step at a time. Ittakes me twice as long to get dressed. I cannot take my own boots off, bymeself , I need help. Im cannot safely carry my Grand-baby ( and that hurts alot). I use crutches, sticks and have an NHS tank, that has probably blown myleft shoulder. I cannot do any of the things I used to do outside , and I livein one of the most beautiful parts of the country. My medication ? The sideeffects are amongst other things incontinence and unexplained diarohhea, and itcan and takes you be surprise. You cannot stop it. ( The afforementioned tasksetc is just a miniscule amount of what I can no longer do)

I now get HRM and HRC . Maria Miller and the powers that be, want to take thataway from me. They brand me a criminal, they tell lies about my compatriatesand friends, what did we do , except survive ? And what for ? To be vilified,and harrased and deemed scum . Now, before oh gentle reader, you say " No,not in this day and age" I am sorry to say that the answer is " YESSADLY " and the main protagonists are the very people we would hope thatwould make the rules to keep us safe.

Thanks for reading, I do witter on, however remeber this I AM SPARTACUS ONE OFMANY.

Much Love Robomam aka Mewsli aka Carole

Marks Story #spartacusreport #spartacusstories

2012-01-17T21:00:00.000Z

A Personal Story

I’ve neverbefore described my disability. I consider my problems to be much lessdisabling than those of the truly courageous campaigners that produced“Responsible Reform” (otherwise known as TheSpartacus Report). But that’s what we do as disabled people; we tryso hard to get on with our lives despite the pain and frustration, commonlysaying “of course I’m grateful that my problems are nothing like as bad asthose endured by X, or Y or Z”. It is a form of stoicism or maybe denial, butit’s part of that mental armoury that gives us our determination and optimism,even when we are in pain and we have to wait another 3 hours for our next doseof analgesia.

For years (since my 30s) I’d battled with painful joints. Initially mainly myneck hurt, but I was told it was down to bad posture. 10 years and masses ofphysio/osteopathy and painkillers later, after a battle with a totallyunsympathetic GP, I had an MRI scan. Well, well severe osteoarthritis resultingin bony spurs that were pressing on the nerves exiting the spinal column.

I continued to manage this into my 50s. However a whiplash injury hadaggravated it considerably and I was struggling with the fine movements in myright hand. This was crucial to my work as a nurse as it was making itimpossible to draw up injections. I was forced to take ill health retirementfollowing a long battle with my employer. Subsequently I have had considerabledeterioration in knee and ankle joints and lumbar vertebrae, due, apparently,to the years I had kept fit by running!
Trainers that absorb the shock hardly existed 30 years ago.

The painkillers hardly have any effect! I can no longer use low doseamitriptyline or anti-inflammatories because of either the cardiac risk orgastric bleeding, which is a shame as they were remarkably effective.
I have seen a remarkable, lovely, pain relief pain consultant who has triedeverything in his considerable armoury including quite scary nerve blocks whichhave failed to work.
All I want is to be able to walk a hundred yards without pain or get downstairsin the morning without the use of a walking stick.
I can only imagine what an unbroken, pain-free night’s sleep must be like.

I would love to be able to cook fresh food pain-free and not have to rely onthe disgusting slop that is microwave meals.

For this I receive DLA Low Rate Care but I’d much rather be able to cook, andwalk to the pub!

Dombeds Spartacus Story #spartacusreport #spartacusstories

2012-01-17T20:30:00.000Z

I am Dombed and I would like to ask for the reform ofDisability Living Allowance into the Personal Independance Payment to bepaused. The government need to get this right and at the moment its looks likethey aren't, and if you read on I will explain why.

It was just after my daughters 2nd birthday that it was noticed that somethingwas wrong. She was put on multiple waiting lists and Autism Spectrum Disorderwas indicated as the prime candidate, and we were told that we should claim forDLA for her. I duly rang up and asked for a form, filled it out and sent itback. That was the beginning.

After not hearing anything for 2 months I contacted the DWP, to be told thatthey had decided her claim almost 2 months ago - after having the claim formfor less than 24 hours - but had not sent my a decision letter. They had turnedher claim down as she was 'too young' to have extra care needs. I appealed as Idid not agree - she could not communicate, had self-injurous behaviours likePICA and a lack of sense of danger that meant she had to  be closelysupervised the entire time she was awake, which is sometimes more than 20 hoursat a time, which is a very long time to be hyper-vigilant. She is totallyexhausting, as much as I love her. As far as I am concerned that is way abovethat that you would expect with a 2 year old. You normally get to do housework,you don't have to remove foreign objects from their mouths or rescue them fromshelves 6 feet off the ground 30 times a day. You don't have to have stairgatesthat are 5 feet tall in order to get any sleep at night.

We sat and waited and waited. I was doing my best to juggle caring for her, mydisabled partner, our other child and work full time. It got the point that Iwas made very ill by all the stress and had a large amount of time off work,and in the end I had to temporarily reduce my hours at work because there werejust not enough hours in the day. Eventually we got an appeal date which was 14months after the date of the claim - the problems with ESA  and theWork Capability Assessment have had a large knock on effect on all benefitappeals.

At the tribunal they also felt my daughter was 'too young', but the chairpersoninstructed me to apply again immediately because they (the tribunal) would notturn the claim down again, even if the DWP did. At that point I was very closeto giving up completely - the thought that we would win and finally be able tobalance our family life was the one thing that kept me going for that year - itwas the light at the end of the tunnel. More forms were ordered that daythough, and filled in by our Speech and Language Therapist (who got quiteindignant and sweary about the claim not being allowed).

This time they took several weeks over the claim. It was a very nervous fewweeks. In the end they finally awarded her DLA - with care needs the same asthey were a year before. All in all it took 16 months. 16 months to getassistance.

Now we have DLA for her we have been able to arrange life so it fitseverything, and we also have a formal diagnosis of Autism Spectrum Disorder anddevelopmental delay. Because the DLA passports to extra allowances of TaxCredits and Housing Benefit I have been able to reach a permanant agreementwith my employer over my hours. I can still work and I can now fullfill my sideof the contract, whereas before I could not due to my caring responsibilitiesand was risking disciplinary action. Her DLA has helped with things like her nappies(as she is unable to be potty trained), clothes and shoes (due to herbehavioural problems she goes through them really quick) and sensory equipmentand toys to try to help her to reach her full potential. In the future I amenvisaging using it to buy her a special buggy, as at nearly 4 years old she istoo big for a normal one, but there are times when she just will not walk.

If we were to lose her DLA at her reassessment (in 2013) we would be in severedire straits. We would lose the passport allowances which means we would not beable to make ends meet - we would have to start deciding whether to eat or topay the bills and rent., because eventhough I do not earn enough to live on,its too much to claim most means-tested benefits. And if PIP is brought in Ifeel there is a very real danger of that happening. PIP is missing someassessment criteria that is currently in DLA, which is needing supervision toprevent harm to yourself and to others. The removal of this criteria is ofmassive importance to my daughter, and many claimants with Autism, because itsan area that people with Autism often have trouble with. Autism is not alone inthis - brain injuries and things like premature dementia can also cause peopleto need supervision to keep themselves safe. Removal of this criteria will leadto people having their DLA withdrawn, eventhough their care needs have notchanged, and the people affected will be some of the ones least equipped tocope with an appeal or loss of income.

My daughters Autism Spectrum Disorder also does not lend itself well to aface-to-face assessment. There is no way 20 minutes in an office with a doctor,who may or may not have any knowledge of Autism, will be able to verify thediagnosis, let alone her care needs.

This type of assessment is totally inappropriate for Autism. Its a called aspectrum disorder for a reason, and its a very broad spectrum. No two peoplewith autism will present with the same characteristics - some will speak whileothers are non-verbal, some will stim others won't, some will avoid eye contactothers won't. Unless the health professional has considerable indepth knowlegdeof all aspects of Autism and all the characteristics that may or may not bepresent they WILL NOT be able to make any judgement on the level of impairmentan Autistic individual has. For example, if you ask my daughter the 'right'questions she can fool you into thinking she can communicate. If the healthprofessional did not ask her the same question 5 times they would not noticethey fact she uses the same intonation every time - that it is a learnedresponse to that question and that question alone, and she cannot answer if itsphrased slightly differently because she has not learned how. The chances ofher exhibiting her self-injurous behaviours or stimming during the 20 minutesnap-shot are not favourable either. A face-to-face assessment will beinaffective at helping the decision process at best and at worst, very damagingto a persons claim.

Her own health professionals (all of which are very experienced) have, and willcontinue to, provide accurate evidence of her impairments to the DWP decisionmakers, and they are far better placed to than anyome else.

Please pause  the reform to PIP before massive hamrful mistakes canbe made.

Dombed

Janes story #spartacusreport #spartacusstories

2012-01-17T20:00:00.000Z

The firsttime I claimed DLA, I was so damaged by the process and upset by the refusal, Ijust did not have the courage to go on, and it was my sister who finally encouragedme to reapply. Even then, it had to go to appeal before I got an award,and that was below what I felt I was eligible for under the currentlegislation. But, when you are ill, and bearing in mind how the wholeprocess had impacted on me, making me much more unwell to the point of beingbeddbound, I could not bear to take it further. Be thankful for smallmercies.

That award was for two years. It had taken a year to get through theprocess, so the following year I had to reapply. I filled in a long, longform with all the gory details of my disabilities, and was called to a medicalat the same place ATOS do their WCA assessments. This time the award was'indefinite' - not lifetime, but until such a time as I improve or worsen, orthe rules change, or they decide randomly to have another look at me.

Because I have very limited mobility, I saved up my DLA to buy a mobilityscooter. I only have space to safely keep a very small, foldable one, andthey are expensive, but it has meant I can get to the doctors and otherappointments now without the damage to my health I used to suffer before I gotmy travelscoot.

Because the NHS does not prescribe any useful medications for my condition, Ialso use my DLA to buy the supplements and medications that support my healthto the point of being virtually self caring. Without these various pillsand potions, I would be a lot sicker, as I am reminded every time I test thistheory by doing without one or other element of my protocol.

There are other additional costs to being disabled, of course. As I amstill virtually housebound and at home all day, my heating bills are higher,and as I rely on internet shopping, I don't get the bargains or the choices anable bodied person has, and then of course there are delivery charges. Ihave to rely on prepared food, which costs more. I do miss going to theshops!

I have a very strong feeling that the 20% reduction in spending that thetransfer from DLA to PIP represents will be the greatest mistake in the long run,as disabled people no longer have the wherewithal to look after themselves bybuying the help they need, and thus we become more disabled, and may well endup to going into care or hospital.

The government are making it sound like DLA is easy to get, and people who arenot eligible are claiming successfully. I refute this. The fraudrate in DLA (by the DWP's own figures) is 0.5% - one half of one percent. That has to be one of the lowest rates of fraud ever, in any benefit. DLA works. It is well targeted. Changing to PIP will costmoney in the reorganisation, and later, in increased bills to social care andthe NHS.

Sarahs story #spartacusreport #spartacusstories

2012-01-17T19:30:00.000Z

MY SPARTACUS STORY (abridged)

I am writing this now because I have a physical disabilityand am relying on DLA and soon probably other benefits too as I face the lossof my job. I did however, have experience of the welfare system as a youngadult, and so have included my earlier experience of mental health problems. Ifyou wish to skip that part and go directly to my current circumstances, andfears, then go straight to paragraph 6.

As a teenager I suffered from mental health problems. Ibegan self-harming at the age of 11 and by the age of 13 teachers, andsubsequently parents, found out. I was seen as an outpatient and given Prozac;this gave me terrible panic attacks. I was admitted to an adolescentpsychiatric ward in January 1997 for 2months, where I was put on seroxat, nopanic attacks, but first ever suicide attempt followed soon after. I returnedto school, but the ridiculing at the hands of others at my difference andunusual absence was too much to bear and I took an overdose not long afterbeing back. Not to mention, the school had not let me be part of normal lessonscontrary to what they had promised the hospital at the discharge meeting. Afterthis overdose I was unofficially expelled, just wiped off their records andasked never to step foot on the premises again. The year book produced justunder 2years later lists ‘those who left us early’ and includes those expelledfor drug dealing, bulling and other atrocities, but none so serious as mentalhealth issues, for which I was inexplicably deleted from the memory of theschool.
In October of that year, now 14years old, I was readmitted to the same hospitalfor a 2week assessment. This two weeks became a year in total. In the FebruaryI was detained under the Mental Health Act on a Section3 (6months) due torepeated attempts to take my life. The next October, 1998, I was transferred toa secure unit, where it became apparent that this could easily be my life forthe next few years unless I did something about it. I appealed against mysection, and won, much to the dismay of the consultant who had said “You definitelywon’t get off at this one or the next one, you could win an appeal at the oneafter that, but I wouldn’t support it” – they were 1year sections by that pointtoo. So he had his idea of my life bagged up, secured up even, having met mefor probably less than 3hours in total, for the next 3years. I was still veryill, but not as ill as those who sat alongside me in the smoking room. I had asupportive family, and a place to be looked after by loving parents, which ismore than most the other patients had.

I left the secure unit in May 1998, moved back in with myparents, and attended a therapeutic community day centre. After 6months, Imoved in to a supported living hostel. Despite all the love and support myparents gave me, I had become institutionalised and used to the structureprovided by anonymous staff rather than loving parents. I also wanted to livein the town and not have to do the the 2hours bus journey every day to get tothe day centre from my parents village. Hear began my journey with the welfaresystem. I put in a claim for income support, as I was still attending thetherapeutic community daily for 6hours, and so there was no way I could work.As soon as I moved in to the hostel, I put in an application to the council foraccommodation as there was a 3year time limit on staying at the hostel so itwas standard procedure to apply as soon as you moved in. Due to my mentalhealth history, they put me in a high medical needs band and I got a flat of‘my own’ within a few short months. By August 2000, a couple of months afterturning 18, I had moved out and in to totally independent living. I hadexpected to be staying in the supported living hostel for at least 2years, soit was a bit of a shock. I was still attending the therapeutic community daily,still self-harming, still suicidal, battling an eating disorder, but doingeverything I could to get better and stay out of hospital. I was receiving DLAby this point, it was, if I recall correctly, set at £200 a month & helpedme in my move to independence. In Sept 2001 I got a boyfriend, he wanted tomove in and as he was working, he couldn’t do this legally with me claimingbenefits. So after a while, I ditched everything and got a full time job, at anursing centre. Having not particularly worked before save for the odd pubshift, I called up the benefits office, proudly declaring my intentions to workand that I no longer needed their help. I lasted 3weeks in the job beforemeltdown. I went crawling back to the benefits office, admitting defeat, askingfor help again but because my boyfriend was living with me, his earnings, ofabout £10,000 a year, were considered enough for us both to live on. Hepaid all the bills, rent etc. I lived on my DLA, trying to get over thehumiliation and set back I had put myself through of going in to work andfailing after such a short time. After a few months, I applied for a part timejob, just 2 days a week, I did this for a few months before the job became fulltime. I was by no means ‘well’ at this point, there were still many incidentsof self-harm which remained secret from loved ones and employer alike. Such wasmy determination to work and be part of what is considered normal and acceptedin society, that I managed to carry. Sometime during this period, my DLA wasturned down at renewal, I forget why but it was, and that was the end of myjourney with the benefit system for some time.

In 2003 I applied for a job working for a large publicsector organisation and was lucky enough, somehow, to be successful. During mytime working there, my mental health has been far from perfect. Up until 2005,I was still having weekly therapy sessions with my key worker from the daycentre. In 2005, this service was shut down due to budget cuts at the PrimaryCare Trust. A particularly serious attempt on my life followed, leaving me in acoma for several days with the doctors unsure if I would wake up (I had twoweeks off work in total). After that, I could no longer cope with the jobI was doing (having been made redundant due to centralisation from the firstone) and I put in another claim for DLA, this was awarded for 1year.

Due to being awarded DLA, I could apply for a part time jobthat came up in a department I had always wanted to work in, it kept me in workand off full benefits, I was still paying all my rent, still paying tax andnational insurance, and still had the dignity of being in work. During thatyear, I really took time for myself, I saw a brilliant psychiatrist who put meon new medications being very forward thinking that he was. Most psychiatristsin adult services see you ever 6months and prescribe medication, but no therapywould be involved. I was lucky enough to get this lovely doctor on his 1yearrotation, his special interest by my diagnosis.

Being part time at work meant I could start new medicationson the days I wasn’t at work. Take one day a week to have therapy. One of themedications had to be increased every two weeks due to the risk of a fatal rashdeveloping if it was increased too fast. Every time I increased it, I becamesuicidal, I knew it was down to the medication but it didn’t make it feel anyless real at the time. I could time all this to not miss work, and to stay inmy part time job, having DLA enabled me to do that. After a year of working andhaving time to finally stabilise things whilst being largely ‘out of the mentalhealth system’, I was ready to go full time and a position came up so I didn’tattempt to renew the DLA, not feeling I needed it anymore, and along thingsplodded, in stability and relative happiness. I got a boyfriend (the lastrelationship ended in 2005) and we were so happy, and in love (and still are).Then there was the fateful summer of 2010.

I woke up on July 9th 2010, one of the hottest days of thatyear so far. I got out of bed and the room was spinning, I felt like I’d hadabout 8pints of cider. I stumbled about, exclaiming to my boyfriend as Istaggered about how odd this feeling was. I put it down to the heat, butfeeling rather weak, got on a bus instead of cycle, and got the train to Londonfor a hen do. I stayed sober throughout, not drinking much at all, no longerdizzy, but slightly not right still the same. I stayed at my friend’s house inLondon, waking up to the phenomenon that is double vision, or diplopia as itbecame on my medical notes, along with the room spinney dizziness that hadreturned. I kept rubbing my eyes, blinking, assuming this would go away, that Ijust hadn’t woken up properly yet. I walked about and waited, still noimprovement, laid back down, my two friends still fast asleep. Skip forward afew days, couple of GP appointments, and a diagnosis of labyrinthitis, I wastold by a GP I needed to get to A&E, I was rather shocked at thissuggestion, A&E for an ear infection, surely not?! Anyhow, I managed to geta lift to the hospital and waited together with my boyfriend for hours in thewaiting room. Eventually, they started mentioning brain scans, and I startedgetting scared. All this time, however, I didn’t believe myself. All the yearsof having mental illness, physical illness was always blamed on stress, orsomething I’ve done to myself, I didn’t believe there could be anything reallywrong with me. It must be all in my head I thought. They did a CT scan, whichcame back clear, and stuck me on a ward by about 4am, about 15hours since I’dgot there. The next days are all a bit of a blur, but the included the startingof going numb down my left side, getting woken by severe stabbing pains inbetween my shoulder blades, losing the ability to walk. I had a brain MRIwhich showed lesions, patches of demyelination. I had no idea what this was,but was told it was a one off, probably as a result of a gastric bug I hadpicked up when I visited a friend in Ukraine a month before. After a week, Iwas discharged, using two crutches for short distances and a wheelchair foranything more, which was unavailable on the NHS so I went to the Red Cross wholoan them out on a temporary basis. Over the coming weeks, my walking graduallyimproved, the feeling slowly returned and the pain in the shoulders eased. Mywalking however did not improve completely, the sensation did not return tonormal sensation and the pain did not completely disappear. In September, Ireturned to my job on reduced hours, where I continued to try and build them upto get back to full time. By early November, I could walk probably over a mile,I was back on my bike, I was going great guns. Still getting tired, still notback to ‘normal’ but so much better. Then suddenly one day, I just couldn’t. Ihad no idea why, nothing I could put my finger on as such, I just couldn’t walkas far and could no longer balance on the bike. I had a follow up scan and aneurologist appointment on 20th December, where they confirmed that I had newlesions (oh so that’s what the suddenly being able to do less was) and gave methe diagnosis of Relapse Remitting Multiple Sclerosis, and gave me somesteroids for the relapse.

In February 2011, I had another relapse, more steroids.Still not over the first two, but was told that it can take up to 6months forthe healing to fully occur, but that after 6months any symptoms are permanent.So that pain between my shoulders that stops me sitting on certain chairs,sitting for too long? Yes, permanent. That seeing double on looking to theleft? Yes, permanent. That weird sensation down my left torso where I can’ttell if something is hot or cold and it feels like I’ve been slathered in tigerbalm? Yes, permanent. Getting so tired I can’t do anything? Yes, permanent. Iwas still not able to work full time, and considering my job was meant to becovering a shift pattern and because of budget cuts the office was alreadyrunning at 25% less than it should be, I was worried I was going to lose my jobas it became apparent I wasn’t going to be relieved of the symptoms that werestopping me being there, working full time and working shifts. I was there, butnot in my full capacity. I got in touch with a disability charity, who helpedme put in a claim for DLA which I was awarded for two years, until February2013.

After another bout of steroids, and all the fun this brings-side effects include sleeplessness, constipation, bitter taste, feeling likeyou have a second skin, frequent urination. The side effects are okay though,it’s the withdrawal symptoms where you feel like every joint is sprained, can’twalk, can’t use crutches, just have to stay in bed for 2days until it passes. Istarted daily injections of Disease Modifying Drugs (DMDs), to try and slow theprogression of the M.S. I got horrible site reactions, each one swelling up tothe size of the biggest mosquito bites I’ve ever had, itchy like crazy and hardlumps, some of which still remain. The site reactions however, feel likenothing to deal with compared to the possibilities of the alternatives.Basically with DMDs for M.S, you initially have two choices, the Interferon’sor Copaxone. I was directed to the M.S decisions website by the M.S nurse, andmy decision was based mainly on what I read on there, and other reputableonline sources. Interferon’s, although generally don’t give site reactions,have the common side effect of having flu like symptoms for 24-48hours afterinjecting. Depending on which interferon you go for, this is anything from oneto three times a week. Interferon’s are also not recommended for people witha history of depression. I was, and still am, trying to desperately clingon to my job, so for the stability that Copaxone felt it could provide bycomparison, I decided that daily injections and site reactions were much easierto deal with than flu symptoms and depression.

So on 1st March 2011, I began Copaxone, full of hope that itwould stave off what appeared to be rather regular relapses. In July 2011,another relapse hit, I also got very depressed. Was it a symptom of therelapse, or a natural response to dealing with having been diagnosed with adegenerative illness? Who knows, not me, but it was what it was. I stayed atwork, but just felt so bleak. In the September, I had a routine appointmentwith the MS nurse, who wanted me to see the neurologist as things still hadn’timproved, I informed him of some of my newer, more embarrassing symptoms (let’sjust say there were of the bowel) and he confirmed it was a relapse and gavemore steroids. Too early to consider Copaxone a treatment failure for him, andtoo early for me to give up on it given the alternatives, we carried on withit. I have expressed my fears of going on to an interferon to the neurologistand to the MS nurse, that I would lose my job if I had to have more time off toget used to it, and also my fears with depression. The flippant response hasalways been “oh well, we’d just treat that”. They have no idea that it is notthat easy. They say they would monitor me, would they? Of course not. Unless,by monitor, they mean carry on with the 3monthly appointments that I have now,and leave it up to me to call if I feel depressed and if I do refer me to theGP for some jolly old Prozac. Little do they know, I can’t take Prozac,seroxat, citalopram, sertraline, venlafaxine, lofepramine, amitriptyline oranything other tricyclic or SSRI. The only anti-depressant I’ve ever respondedto is moclobemide, one of the newer MAOI’s, with which, one can’t take any cold& flu remedies, which if was to be on a drug which makes me feel I have flu3times a week, ain’t gonna be much fun and ain’t gonna make for staying in ajob for very long. All of that aside, the flu, the depression, I could probablycope with if it wasn’t for the fear of losing the job. I could also maybe copewith the depression, if I had some kind of back up or offer of help from themental health services. Remember those budget cuts I mentioned from 2005? Theripples are still being well and truly felt. After the bout of depression insummer 2011 I asked my GP if there was any chance of getting some CognitiveBehavioural Therapy, as I had responded well to a short course of that as ayoung teen, and it is recommended for dealing with M.S. She referred me for anassessment, which came up a blank. There is no mental health support forsomeone who has a history of mental illness and is newly diagnosed with adegenerative illness. I can cope with this, but understand it does make mesomewhat nervous to try a drug, or new situations, that might push me to thepoint of not being able to cope.

Oh, yes, this is probably the point where I should explain abit about the job situation. After all that timing of the drugs, choosing theDMD partly based on work, taking steroids so the withdrawal symptoms are at theweekend, I am losing my job anyway, due to the centralisation of the office yetagain. As well as centralising, meaning a commute that I couldn’t manage, thejob itself is changing, meaning shifts I couldn’t manage. Even if I could getthere, the setup of the new office will be such that it would be too much background noise for my poor concentration levels to cope with. The job itselfrequires too much cognitive function which I feel I have lost. So my onlyoption is to ask for medical retirement, or redundancy. Obviously redundancywould be a one off payment that might see me through 2months, 3 at a push, andthen I’d be stuck. So medical retirement and a pay-out of the pension I’ve beenpaying in to for the last 8.5 years, seems like the best option, to keep themetaphorical welfare wolf from the door as much as possible.
Once I found all this out, and it became apparent I was losing the only jobI’ve ever felt safe working in, ever enjoyed, the environment I’ve known forthe majority of my adult life, I was rather stressed, and as much as I triednot to be, I was. Thus, making symptoms worse. This, coupled with the death ofa family friend (who sadly lost his battle with his own M.S journey), meant mybeing signed off for a month over Christmas. I was due to return this Monday,today, but sadly, after toiling away online last Tuesday, reading about theSpartacus report, and trying to do my bit, I’ve had another relapse and am onanother course of steroids. This relapse bought fatigue like I’ve neverexperienced before (able to be awake for about 5hours a day if I did nothing),both legs buckling when I walk, head spinning, nausea.

I am gutted I can’t go back to work; I want to go back notjust fade out. The office is moving at the end of April, so I have to be goneby then anyway. I am filled with fear as to what I will do.
It seems the Copaxone is not working, so I need to consider interferon (Oh, didI mention, after interferon’s is another option a monthly infusion, which has thelovely side effect of sudden death), but if I take that, am I going to be ableto hold down another job? Is a new employer, if I’m lucky enough to find onewilling to take me on, really going to tolerate the level ofsickness that taking an interferon could bring? So do I push for thischange now, & try and be stable by the time I need a new job? Or do I nottake the risk of depression in an already stressful time, and ask to jumpstraight to the one with sudden death as a risk?

At the moment, I am still lucky enough to be being paid fulltime, however obviously when I lose this job, I will look for a part time job,as I just can’t manage full time. I can’t work enough to support myself, livingin the cheapest accommodation I can, a one bed council flat. I am not in amansion, I am not asking for the world. I am asking to be able to manage mylife in the best way I can, taking as little from the state as I can in theprocess. DLA enables me to do this, without it, I'd be out of work altogether,thus claiming housing benefit, council tax benefit, employment supportallowance, not paying income tax and not paying national insurance. Aside fromall that nonsensical ridiculousness of it all, I don’t want to be sat aroundthe house all day, my GP doesn’t want me to be sat around the house all day,and this will do no good for my physical or mental health. I NEED DLA to beable to work, to be able to pay income tax, national insurance, council tax andrent. I NEED DLA to have my dignity, health and happiness. I could go in to theins and outs of what else DLA pays for, but I think that you should be able toimagine that now, with the rather lengthy history I have provided, and afterall this isn’t a DLA application, it is a piece of writing from the heart. Needlessto say there are many other ways in which DLA helps me, but what can make moresense than being able to stay in work, costing the state less and making acontribution?

I am so scared for my future. To summarise the fears I feelI face are, losing my job in April this year, hopefully getting medicalretirement, but this is a whole battle I have still to face. Once I am gonefrom this job, I will look for part time work; I may or may not find anemployer willing to take on a disabled person with an erratic and unpredictableillness. If I am lucky enough to find a new job and get settled, I then havethe DLA renewal to face early next year. With PIP being introduced in April2013, I really can’t imagine a DLA renewal being awarded 2 months before. If thisis turned down, how do I live? I will have to quit the job I might have juststarted settling in to. And when do I fit in the change of medication to allthis? The change of medication that isn’t to manage day to day symptoms, butsomething that needs to be done to try and slow down the progression of thisbeast that is M.S. Every month this is put off, is potentially a month takenfrom my future. I am scared, I am scared of M.S, scared of not knowing how longmy body will hold out, scared of not knowing with each relapse what symptomswill remain with me forever, scared of depression, scared of feeling suicidal,scared of dying at my own hands, scared of dying of M.S, scared of how this isaffecting my loved ones. However more than all of those fears, I am scared ofDavid Cameron and his Welfare Reform Bill and the ability that one small groupof people with no experience of life on the bread line, has to make all thethings I, and millions of other disabled people and their carers, have to faceanyway, so much harder.

None of these things in my life can be helped, they are thehand I was dealt and I don’t proportion any blame or expect special treatmentor sympathy because of it. But I do expect to be able to LIVE, ideally,with some dignity, although in the current climate maybe dignity is just toomuch to ask, but living? Surely not.

catherines story #spartacusreport #spartacusstories

2012-01-17T19:00:00.000Z

My DLA

Has enabledme to be a proper mother to two children, both with physical or mental disabilities who have gone on to University and are now wage earners in their own right. Now I need my DLA just to keep alive and the house clean. My condition has got so bad that I can no longer walk due to breathlessness nor care for myself. Before all the 'disability bashing' started I regarded myself as an equal to people I mixed with. No I have no self esteem and am receiving psychiatric
treatment as well as a panoply of drugs and regular checks. My condition will eventually kill me. And I shall die feeling less than human, a creature, a burden, a sponger, not the pretty disabled young woman I used to be.

chronicallyunnormal#spartacusreport #spartacusstories,

2012-01-17T18:30:00.000Z

Davids story #spartacusreport #spartacusstories

2012-01-17T18:00:00.000Z

I don't get DLA, my walking difficulties mean I may well be eligible, but
after the ordeal that was my Work Capability Assessment for ESA, I simply
can't face putting myself through another assessment, and in fact I am
struggling with my ESA renewal for the same reason.

We hear ministers bleating that DLA is unassessed, and yes, a lot of people
are on lifetime awards, but really, when was the last time a missing limb
grew back? If DLA is unassessed, why do my friends who do receive it fear
their renewals so much? Might it be that certain ministers are being
conservative with the truth?

They tell us that PIP will have more rigorous assessments than DLA, let me
tell you about my ESA Work Capability Assessment, and you decide if that is
what you want to put DLA recipients through (and remember, unlike ESA which
is an out of work benefit, DLA recipients include children and pensioners).

I became unemployed just after ESA and the WCA were introduced, but
initially elected to claim JSA, in large part because of the stories already
coming out about the way the WCA system was failing disabled people. But ESA
wasn't that easy to avoid and it rapidly became clear that JCP were utterly
incapable of dealing with someone who was either disabled or highly
qualified, and god help you if you were both. The end result was a complaint
to ministerial level, abject apologies from JCP, and a request that I
transfer onto ESA.

My first WCA assessment was scheduled for May 6th, 2010 at the local ATOS
Assessment Centre, and what an ill-omened day that turned out to be! The
building is located in the centre of town and has no on-site disabled
parking, so is utterly unfit for purpose before you even get to the door.
There is a public disabled car park some 150m away, but that regularly
requires a wait of over 30 minutes to find a space in it and like many
disabled people I cannot walk even 50m without experiencing significant
pain. The next nearest disabled parking is 350m away. If you can manage to
get to the building access at the door is via intercom, so how someone deaf
and/or without speech is supposed to manage is a mystery. The DDA and the
Equality Act both require service providers to make provisions based on the
likely needs of their clientele, so a building whose entire clientele is
disabled should make a significantly greater degree of access provision than
most, yet the vast majority of ATOS assessment centres, even new ones, fail
to meet even the most basic standards of accessibility.

I had informed ATOS in advance via the ESA50 form that I would require
adjustable seating because of the difficulty in sitting that results from my
disability, which is in fact the core of my problems regarding working, so
pretty much fundamental to the whole assessment process. None had been
provided. The tattily-dressed individual who checked my ID led me into a
waiting room filled with cheap, non-adjustable seating completely
inappropriate to the needs of a client population containing a high
proportion of people with musculo-skeletal and pain and fatigue based
disorders. Within seconds of trying the seating I had realised that I was
completely unable to sit on it in any comfort, only by rolling sideways onto
my hip was I able to tolerate it at all. By the time I was called through,
something over 10 minutes later (despite apparently being the only client in
the building), I was in considerable distress, which only deepened when I
reached the examination room and found that the seating there was actually
worse. It was at this point that I discovered the tattily-dressed individual
was actually the doctor who was supposed to assess me, not the caretaker as
I had first assumed. I pointed out that I had told ATOS I needed an
adjustable seat and his reaction was 'Oh, you'll just have to book another
appointment'. He then admitted that this was not the first time this problem
had occurred, that they had asked for adjustable seating to be supplied and
that they had been told by their regional management to 'make do with what
you have'.

I returned home having wasted my time and experienced major amounts of pain
as a result. That pain triggered a massive flare-up in my condition and I
spent the following week on the floor of my bathroom as I was wracked by one
muscle-spasm after another, not knowing even what day it was. I eventually
managed to get to my GP, who doubled the strength of my opiate painkillers,
which brought the flare-up under control, but at the cost of my wandering
around in a daze for several months. The loss of control in this kind of
flare-up is extremely distressing both physically and mentally and I was
completely unable to deal with mail during this period, simply the thought
of a letter from ATOS or DWP being sufficient to send my pain levels
sky-rocketing. Ultimately it took me six months to completely catch up with
my mail, at which point I discovered a letter from ATOS dated a week after
my initial WCA date and calling me for another WCA a few days later, which
needless to say I had not attended, being barely conscious at the time.

In late-August 2010 I received a letter from DWP stating that my ESA
payments had been stopped, from the week before my initial appointment,
owing to my failure to attend the WCA. I called the office the letter had
originated with and the person I spoke to was perhaps the only DWP employee
ever to have impressed me with competence and common sense. She immediately
accepted my inability to attend a WCA I was not aware of and noted that ATOS
had made no mention of their failure to provide a required reasonable
adjustment, but had simply stated that I had not completed the initial WCA.
When ATOS set out to deliberately portray their own error as a failing by
the victim of that error, and a failing with fiscal consequences, then there
is no way to interpret their actions as anything less than actively and
deliberately dishonest.

Thanks to an unusual outbreak of common sense at DWP, my claim was
eventually reinstated and a further WCA was arranged for mid-October, again
at the local assessment centre. This time I was met at the door with an
adjustable chair. Unfortunately I could not even raise the seat of the chair
to an appropriate level, nor did the seat angle adjust, the only hope I have
of a usable position if the seat isn't high enough. Again I was reduced to
rolling sideways onto my hip. This time the delay was not 10 minutes, it was
something over 45 minutes. By the time I was called through (with the
receptionist bringing the useless adjustable seat through after me) I was
physically shaking. It was a different doctor to my first appointment, but
again he was scruffily dressed in a tatty anorak. It is impossible to
conclude that this reflects anything other than a profound lack of respect
for their clientele on the part of ATOS medical staff.

My pain-management consultant has told me that is almost impossible to get
doctors who are not specialists in pain-management to comprehend just how
disabling pain is, and I was therefore concerned about how much of a
background the assessor had in chronic-pain based disabilities,
unfortunately his manner instantly convinced me that any question would be
interpreted negatively and I did not feel able to make my point. As the
session started I rapidly became aware that I was in so much pain that I was
not answering effectively and was making a case for myself that was not as
strong as it should have been. It also became rapidly apparent that the
doctor was profoundly irritated by my refusal to give yes or no answers. He
may have found it irritating, but any understanding of my condition required
that he listen to the details and I would not be swayed on this, though
undoubtedly many people who are less able to express themselves will have
been browbeaten into less than complete answers by his manner. It was also
extremely apparent that he was reading from a computer-based script, his
eyes fixed on the screen, and less than pleased with answers that did not
fit the format its questions mandated. As a result of this there was an
almost complete refusal to make eye contact, destroying any sense that he
was truly engaging with me.

More disturbingly, he chose to take umbrage at certain of my points. I do
not expect automatic complete agreement, but I do not expect to be told that
I am wrong to have tried to search out information on the assessment
process, particularly when his subsequent conduct proved the correctness of
that information, nor do I expect to be criticised for the way I have
described the effects of my disability on my walking, particularly when
later events demonstrated that I was being absolutely accurate.

Some 20-odd minutes into the assessment I reached my limits on my pain
tolerance, either I had to stand, or vomit. I spent the rest of the
assessment balanced on one leg and crutches and it was only at this point, a
cynic would say at the point he started to fear being found negligent in my
treatment, that the doctor finally broke script and started to treat me as
an individual. He asked several times whether I was able to continue, but by
that point I just wanted the WCA over with, I certainly wasn't about to put
myself through the process for a third time. He completed the physical part
of the assessment, but even then he criticised me for being unable to bend
my leg so he could tap my knee with his hammer.

WCA thankfully over, I made it back to my car on one leg and crutches, and,
even though it is a bare 5 minutes drive home, my pain levels were so high,
never mind the opiate painkillers, never mind the TENS machine, that I had
to give serious thought to pulling over. I spent the rest of the day in bed,
the first hour physically shaking.

In late-November 2010 I finally received the notification that I had been
placed into the Work Related Activities Group, which is where I believe I
should be, together with back-payment of all the ESA payments I had been due
since May, but the process had taken 10 months and caused me a considerable
amount of pain and physical distress, actually worsening my disability. The
treatment I received has convinced me that ATOS have a complete and utter
contempt for the needs of their clients that adds up to institutional
disability discrimination and that their medical assessors are happily
compliant in this. Sadly DWP is little better, my experience has been that
the system only works when you complain.

I got through the system because I am too bloody-minded to give in when
people erect barriers in front of me and because I am too articulate and
persistent to easily dismiss; but many people aren't as bloody-minded,
aren't as articulate, aren't as persistent and the system will be far more
of a nightmare for them than it was for me. And as I say, I am struggling to
deal with the fact I need to do it all again.

There are several million people in receipt of DLA, some of them are
children, some of them are elderly, some of them are vulnerable. Is this
really what we want to subject them too?

A Spartaci Tale #spartacusreport #spartacusstories

2012-01-17T17:30:00.000Z

A Spartaci Tale

People who chat to me discover my various illnesses but I can't recall sitting down and writing them out for anyone except Atos, so just for #spartacusstories ...

Can I start by saying I spent over ten years in retail management before seeking a change and starting from scratch as a packer in a factory. Worked my way up to Warehouse Manager, trained to operate every machine in the factory, keyholder, used to doing 12hr nights when needed and watching my second wife leave because I was a workaholic. So stick your scrounger labels in a tight dark place and we'll begin.

Originally misdiagnosed, thankfully, with Motor Neurone Disease. After waiting three months inside a vodka bottle I got to see a consultant who told me I had a trapped Ulner Nerve and the beginnings of Osteoarthritis in my spine. Where my Doc had got MND from was a mystery. So, at this point, partial paralysis in left hand, intermittent severe pain in lower spine, beginnings of problems with alcohol and depression, Doctor with a broken nose, me with a new Doctor.

Can't use opiates so finding painkillers that worked was an ongoing game until a friend introduced me to cannabis. ( A whole other story. ) Physio brought some success with the hand although still weak and suffers loss of feeling. But time brought the worsening of the arthritis, as it always does, and a re-diagnosis of Degenerative Spinal Disease. It also brought my first heart attack, diagnosis of cardio-vascular disease and a statement that changed my outlook on life. I was taken straight in to surgery after the heart attack and the surgeon told me he didn't expect my heart to last longer than five years. This was Feb 2008.

In the last six months I've also been getting abdominal pain and loss of control of bladder and bowel. Doc wants to stick a camera up there again but being quite honest if I can sort the bladder/bowel control out I see little point. I can handle pain and if they find what they probably will my heart won't take the treatment required and I'm not willing to spare the time.

So, Monday 16 January 2012, cat snoring, sat quietly, feel bloated and uncomfortable due to bowel problem, hiatus hernia making my reflux worse, reflux bile causing me to hack and wretch, spine pain about a 7 - like toothache in a molar. Usual first steps out of bed told me I'd be able to walk today which was a plus as I needed groceries. All three pain inspired dashes to the toilet hadn't produced blood from anywhere, another plus, bum should be secure while out. Half a dozen layers and a stick assisted tortoise impersonation to the bus stop. Lovely spine juddering bus ride ( I bet all disabled ppl love speed bumps as much as me. ) Little stage whispered moan about arseholes walking three abreast on the pavement as if everyone should make way for them. Pleasant smile from a lady in Tesco, every little helps, then home again. Totally fucking knackered.

Roll up Employers. Cameron's Health Gestapo Atos keep calling me back for assessments so there must be hundreds of you out there who want a complete liability who will puke, piss, shit, curl up in a ball in pain or just plain fucking die at any moment on your payroll. What! No?

All MPs and Lords should feel utterly ashamed at what they are allowing to be done to the UK sick and disabled. Stop the Welfare Reform Bill. Now!

Responsible Reform 'Spartacus' Report << Read it and come chat at #spartacusreport

Denise's Story #spartacusstories #spartacusreport

2012-01-17T17:00:00.000Z

Every time I hear the media or the general public refer to people who claim benefits as "scroungers", their ignorance and lack of empathy saddens me. To me, being in receipt of benefits is most definitely not a lifestyle choice and this is why...

My name is Denise Stephens, I'm 32 years old, I live in London and I happen to have a highly active form of relapsing remitting multiple sclerosis (MS). After numerous years of unexplained symptoms, I was finally diagnosed in 2003, at the age of 24, and my life changed forever.

My life prior to MS was relatively average, I worked hard to gain ten GCSEs, four A-levels and secure a place at the University of Manchester to read Chemistry. Three years of blood, sweat and tears later, I was the proud owner of a first class honours degree. Some might say that the world was my oyster...

Having been fascinated by the world of forensic science since college, I set out to pursue a career in this highly competitive field. I was lucky enough to secure a position as a forensic toxicologist, working for a well known London University. Just over two years later I was offered a position with another organisation, where I would train as a court reporting officer. Little did I know that all of my dreams; independence, career, lifestyle, long-term relationship and so many more, would all be lost within a five year period.

At the beginning of 2004 my health took a turn for the worse, I had a disabling series of relapses which left me barely able to walk, manipulate objects with my hands or see out of my right eye. While my friends were focusing on climbing the career ladder and going out clubbing, I was finding it difficult to do even the most mundane of things, such as hold a knife and fork to feed myself. To say my self-esteem took a battering is an understatement.

Time went by and I was gradually able to build myself back up, with the help and support of physiotherapists, occupational therapists and other health care professionals. But this isn't the end of the story, the following years were divided between periods of illness, hospital admissions and rehabilitation.

I was forced to give up my career, which badly knocked my confidence. I come from a background with a strong work ethic, so without a job I felt worthless. I desperately wanted to return to work, if not my original career, something else even. I'd always worked throughout my education; paper round, shop assistant, waitress, bar work and administration, no job was below me. If only my health would allow me to do any of one of these things, I would have done it.

I reluctantly applied for benefits and slowly felt my independence, and self-worth slip away, only to be replaced by the feeling of isolation and loss. Nobody would be interested in speaking to me, what was I supposed to say when people ask "what do you do?"

I desperately tried to return to work, but attempts were either, at best, short lived due to a deterioration in health and hospital admission or, at worst, a complete and utter false start.

Despite having a first class degree at a red brick university, it appeared that I was unemployable. Looking for part-time work to meet my needs, was easier said than done. I would apply for general administration positions that required GCSE grades and despite the two ticks disability symbol, previous admin experience and a first class degree would receive no offer of an interview. I repeatedly visited the Jobcentre Plus for advice and was told to dumb down my CV. This definitely wasn't what I envisaged when studying so hard for my degree.

Being stuck at home with little to occupy my mind was slowly driving me up the wall, so I decided to go back to university. I was extremely frank about my condition and what it meant I could and couldn't do, but when push came to shove I received very little support, being told that the disability advisors were far too busy dealing with the undergraduates to be able to help. Yet again within a few weeks, I'd had another relapse and was back in hospital.

After years of what felt like hitting my head against a brick wall, the number of hospital admissions well into double figures and deteriorating health, I finally gave up trying to fit into the employment "norm". I just didn't and couldn't fit in and reasonable adjustments were rarely seen as important or necessary.

Slowly the Denise Stephens I and others knew disappeared, I felt useless and lost without the sense of purpose that comes from having a focus in life. Compounded by this, as well as mounting financial pressures which made me feel like a burden, my long-term relationship broke down and I became homeless. Not quite the stuff that fairy tales are made of...

So why am I telling you all of this, I hear you ask?!? Well, it's in the hope that you'll realise that no-one is guaranteed an easy and straightforward life. Health is something that many of us take for granted, but when it's gone there's little that can be done about it. There is no cure for MS, there is no walking away from this and I will have to manage my condition the best I can from day-to-day for the rest of my life. I did not ask to have my world turned upside down, it just happened as it could to anyone else. I did everything that society expected of me; studied, worked, paid my taxes, but now I feel like I'm a second class citizen because I have to claim benefits as my health doesn't allow me to hold down a typical 9 'til 5 job.

The proposed cuts to disability related benefits and services, feels like yet another kick in the teeth for those whose health and disability has already affected their lives and aspirations immeasurably. To carry out these cuts is irresponsible, as they will destroy the very support framework designed to keep the most vulnerable people in society safe and well, contrary to promises made by the government.

This is NOT a lifestyle choice! Do not treat it that way...

Originally posted here

Anne Novis MBE #spartacusstories #spartacusreport

2012-01-17T16:30:00.000Z

Sometime before Christmas I found myself unable to blog.

I hadn't even been blogging for long.

Surely its easy to write a little sometimes, with a break in between sentences what may even seem a small post. To manage my pain. Its called pacing.

I am fortunate the only benefit I claim is DLA (Disability Living Allowance). My husband works and hard. We have invisible disabilities in our family of four. A husband & son with Epilepsy, dyslexia, dyspraxia. Myself and my daughter ehlers danlos, with the addition of osteoporosis, osteoarthritis, arthritis.......    We live simply on a low income.

I found myself increasingly affected by the media and Government onslaught, regarding the status of my verity & probity. I am honest and so are my family. It is not my fault or my families fault that our genetic pool collectively includes the conditions it does. Does it make me a scrounger?

So somewhere along the line and this is where the writing of the blog became intertwined with a deep seated unhappiness about the treatment of those with disability in the UK. I became unable to write about how living with Ehlers Danlos was affecting me. Until this feeling became overwhelming I had felt liberated that I was able to write here. Perhaps in some small way helping another with this devastating, rare condition to cope a little better? Then little by little my confidence became shattered. Perhaps I am overwhelmed by guilt. I know not what the actual cause of this affliction was, except that it coincided with the assault on the disabled of Britain. Why guilt. I asked myself. It has taken me a long time to even be able to say that. Guilty for my disability?

Ehlers Danlos has a profound, lifelong affect on those who have it. For years I worked and struggled to do so. Eventually it became obvious to all that I am simply not fit to do so. This does not make me a scrounger. This is the truth. So we live together on a low income. My only source of personal money is via DLA. My lifeline. I could talk forever about the why's and wherefore's. Dislocation, subluxation, the fact that much of the money is spent on keeping warm. Is that my crime? Autonomic dysfunction, raynauds, pain..... means that the cold has a profound effect on my wellbeing both emotional and physical. If I get cold my body temperature drops too fast and I become hypothermic. Is that my fault?

An able bodied person could possibly go out for an invigorating run to warm themselves. I smile wryly to myself, the memory of running an obscure one, you see even as a child I couldn't run. What one doesn't know one does not miss. There is more to my condition than getting cold. This is just a small example of the additional expense of my disability. A tiny weeny glimpse into my life. To overheat is pretty devastating also. So the heat and the cold are equal enemies to me. Fans are expensive to run also. So is much of the paraphanalia required living in constant severe pain. I won't bore on that front.   Don't get me wrong, I like the feel of the wind in my hair and the warmth of the sun on my face just as much as the next person. Its the wild variations in blood pressure. The inability to stand on my own two feet literally that interrupt these natural pleasures. Its not just that, knees, ankles, bones in feet, hips, shoulders, wrists, thumbs, fingers, elbows sublux and dislocate with even minor pressure. This is not just a standing thing, turning over in sleep is enough to wake in searing pain. Muscles which have altered collagen stretch then stretch more meaning that with each daily multiple dislocations/subluxes injuries are ongoing and further weaken that which is already weakened. Do you know anyone who dislocates their finger touching the touch sensitive pad on a microwave.

This is just a taste of EDS. A starter. It is a complex, painful condition. It is not something I have made up, although many including myself spend many years being labelled a hypochondriac, until finally a diagnosis is made. If one has the condition severely, one is destined for a life of pain.

Do the government see my pain? When I am forced to take a medical in 2013 when my 'indefinite' award comes under scrutiny. Will I have to endure the humiliation of a medical which will be undertaken by a doctor who in all honesty will have no clue as how to appropriately examine the severely hypermobile patient. Why should they know. When many consultant rheumatologist's shake their heads and wonder why the patient before them is so debilitated. This rare condition also has few specialists who have an innate understanding of the complexities of how it affects each individual with it. This medical examination which I am happy to comply with, I don't have a problem trying to explain to a doctor? who cannot see my altered collagen about the effect it has on my life, my body. I have nothing to hide, nothing. But how much will it cost to essentially go through it all over again? To re-apply for something which I have already been deemed eligible for? Seems nonsense to me.

I am honest, if my condition improved I would let the dwp know. In fact I would let everyone know. This is not a condition where my physical capabilities improve. My world is small enough as it is. To face the scrutiny, the humiliation, all over again. The thought of this is tipping me over into a deeply unhappy place.

Is it not enough that every waking moment I am wracked with pain. I dream pain at least I thought I did. Now I know having communicated through the blogosphere to others with EDS that I am not dreaming pain. I sleep an unrestorative, interrupted sleep IN PAIN.

Until the recent persecution of the disabled began, aged 46 I was beginning to feel that the relatively small amount of money I receive from DLA was something I need not feel guilty about. After all we live do we not in a democracy. I contributed via taxes etc. for a long time. Now overnight apparently I am a scrounger. My debt to society is too great. Perhaps they should put us disabled up against the wall and shoot us. Aiming for the perfect race, perfection. All humans are flawed some more than others. When I gave birth to my daughter all those years ago I didn't know I had EDS, I did not know it was genetic. Should I have denied the world her vibrancy, her very being because she is not genetically perfect.

So just when I was finding that I could reach out via this blog and gain inner strength from other bloggers. I found myself - polaxed. Crippled in another way. Because apparently I am not good enough, to warrant respect. My privacy invaded, my bodily functions, the most intimate of functions shared with strangers, where is the respect there. Shall we look to our sisters who chained themselves to railings to get a vote, to be heard. I thought in part much of our fight had been fought. Equality it is surely some sort of sick joke. To re-apply for DLA or pip will be a humiliating, degrading and depressing process.

I am not against reform, I am not against change. I am however appalled that the very weakest in our society are being bullied so.   I have a message though. Beware be very aware that those that are being picked on here are used to pain. Bring it on. For we are stronger than you think.

A year ago I was awarded an indefinite award of DLA. Previously to that I had been awarded three yearly awards. For the preceding years as the three years ran out. I braced myself (those with EDS may be smiling wryly here at the double entendre) braced myself for the invasion of my privacy, the explanation that yes my husband has to perform intimate caring for me, this I explained in detail and the rest. I will do it all over again. Still thinking that surely it should be enough that my GP could write a letter without actually having to go into intimate detail over and over again. He could outline my condition and the limitations it has on my ability to function independently.    Will this save the government money all the new pip pip pippety pip. I think not. Even changing all the logo's on the websites, the headed paper, the paying the IT consultant's to programme, etc will probably cost more than is saved.

DLA is actually the least fraudulent of all benefits. A tiny minority and surely they must be a little ill to be willing to lie so extensively in order to be in receipt of money which for the truly disabled is in fact a lifeline. Enabling us to have a little self respect.

It seems that now not only do I face life with a disability so crippling I sometimes wonder if I did something bad in a former life to deserve such a thing; I also face the guilt, shame, and relentless invasion of my privacy simply because I was born disabled.

I am not sure how much of what I say makes sense anymore on this blog, which is why comments have been randomly latterly turned off. I have turned them back on but please don't feel obliged to do so. Particularly if you want to stop by to say, if I can type this I don't deserve DLA. In truth, and I don't know why I feel obliged to explain, it has taken me in small chunks over a week. With the additional help of extremely potent pain killers and good pain management techniques. Another example - the need to explain even as I write here, that the disabled of Britain are in fact being targeted in an underhand, unfair and inhumane manner. Its obvious this supposed consultation before the inevitable changes to DLA take place that there is a sinister undercurrent at work that only the history books will unveil. Long after I have left this world.

Others are so much better than I, at campaigning, I doubt very much whether my one small post will change one single thing with regard to DLA. But I am used to shame and guilt. I am disabled.

(By the way I have worked out as I write again a little of why I could not do so, I think I was worried that I was pitied. Along with the government/media induced guilt. For the record, the majority of disabled, sick people understand that pity is futile. I was worried that I was moaning over and over again. Well at least I do it here instead of over and over again at OH! Working out along the way that worrying about what I may write, have written is just me and anxiety. Its like the tv, turn it off or change the channel if its boring, purile crap).

I just read this and although I can't do much of the list of want to's in the linked post it is food for thought and I think I should shed the guilt! Silly me, they cannot steal my dreams, yet... Read & enjoy, ...... http://diaryofabenefitscrounger.blogspot.com/2011/01/you-will-never-take-away-my-shoes.html?spref=tw

Originally posted here

Becky's Story #spartacusstories #spartacusreport

2012-01-17T16:00:00.000Z

I'd intended to take part in this blogswarm but found myself wondering if I really had the courage after reading some of the extremely personal posts. I do. However, as Emma has warned us, what I consider appropriate language for disability may not be considered appropriate by other people.

That said, who am I? Am I the 28 year old woman who needs to be hoisted and physically cared for much of my daily life? Am I the 28 year old woman who has embarked upon her doctorate of education, teaches in two primary schools as a volunteer and chairs a charity which supports one of those schools? I'm both those people and what I long for most is that people see me as the doctoral student and friend who happens to be disabled.

Mr. Cameron's latest reforms, although that's a polite word for them, will cause me to be even more isolated and struggle even more for a basic right to have some form of life outside of the four walls of my home. Heaven forbid! A career?!

The proposed reforms make me so angry. Mr Cameron wants everyone, and he stressed everyone (including wheelchair users with cerebral palsy) to contribute to his vision of a big society and to be aware of the lives of others than themselves. Someone, I think it was Mahatma Gandhi, exhorted us to be the change that we want to see. That's what I'm trying to do. Please help us Mr. Cameron. Don't hinder us. And did you forget - one of your family belonged to 'us' too? What you don't know, Mr Cameron, is about the black hole of lack of support a disabled person falls into once they reach eighteen.

The original post on Becky's blog

Coffee's Story #spartacusstories #spartacusreport

2012-01-17T15:30:00.000Z

I claimed DLA in 2008 on mental health grounds, I was awarded lower level care and mobility. It changed my life, meant that I could afford (just about!) to run a car, giving me freedom. I could finally get out the house without my carer, this built up over time to me being able to get back to work.

Unfortunately the last year has been a bad year, 3 stays in hospital and being picked up by the police prior to being sectioned under the mental health act. I have tried to work and have had 3 different jobs, all of which my mental health problems have got in the way of. There is no way I can work at the moment - although I am slightly more stable, I am still too unpredictable and unreliable to work and the pressure to work would cause a relapse again.

So I have applied for ESA - I have filled in my medical questionnaire and sent it back. That was December, still waiting to hear what is happening next. And to make it worse my DLA is up for renewal this year too, I have filled in that form too and will be sending it back today.

Even my mental health team have told me to be prepared to appeal with the way things are at the moment. I don't think I can cope with the appeal process.

No job, No ESA and No DLA - I am very scared that it will push me over the edge.

I am convinced that the government won't be happy until we are all at work or pushed to take our lives - either way we will be claiming less benefits.

By Casdok on behalf of C #spartacusstories #spartacusreport

2012-01-17T15:00:00.000Z

I thought society was making some sort of progress by closing down the long stay hospitals ‘allowing’ us out into our own communities. Obviously society wasn’t ready for us as they are putting us back behind closed doors unable to afford to go out.

My mum has always hated the injustice I have received. She fought for me not to be restrained/confined in a wheelchair for the ease of staff and today as a young man I don’t need one.

But by 2012 I maybe confined to my bedroom.

Not everyone finds it easy to access public transport even with free passes. Busses/trains can be unpredictable. The smells - the sounds - the chaos. Sensory overload. I try and block it all out with fingers pressed in my ears and eyes to keep control. Overwhelmed with pain and confusion I smash my head repeatedly against the window to regain some sort of coherence. I black out.

Staff are scared one day I may not come round. For protection they will chemically restrain me or not take me out on public transport. The government are taking away our mobility money/cars – my lifeline to doing things that everybody else does, shopping, appointments, leisure, visiting family and choice - will be no more. Attitudes of staff will regress to the archaic mindset of pity, inequality and devalued.

Care homes will go back to being more institutionalised as social services cut their funding. PCP’s will no longer be seen as opportunities for disabled people to join the 21st century as now even transport will be cut.

My future is frightening.

Disabled by the government.

By Casdok on behalf of C.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Fit For Work? #spartacusstories #spartacusreport

2012-01-17T14:30:00.000Z

Please note: This video is particularly distressing to watch. It is an individual's honest representation of Britain's secret shame.

"Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest."

This is the effect of doing something on a pretty good day I used to take in my stride, if I had sat about doing very little finding things to keep me occupied that don't involve physical effort I would not have become so out of breath that an hour or so later is causing shakiness and the aches are setting in. This is how many of the the governments benefit scroungers live, choices of living in filth or days when it is possible doing a tiny bit here and there which is massive to the person doing it.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Sarahs story #spartacusreport #spartacusstories

2012-01-17T14:29:00.001Z

SpartacusStories: DLA: my wheelchair, my life.

DLA changed my life andcurrently maintains its quality in a multitude of ways both large and small,from allowing me to read to reducing my pain levels. However I will concentratetoday on the biggest and most obvious of outcomes.

My walking is rubbish. Let's face it, I can only walk a few steps, and that iswith what is called my "penguin walk". My arms are pretty bad too andI can't push my manual wheelchair. Unfortunately, due to my ability to takethose few steps, that rules me out from getting an NHS electric wheelchair. Anelectric wheelchair is a big expense: several thousand pounds. Without onehowever, I am unable to leave my flat on my own.
But I was "lucky". My illness is progressive and I knew in advancethat
a) I would need an electric wheelchair
b) The NHS probably wouldn't give me one
and crucially
c) I was entitled to Mobility DLA long before I was bad enough to need anelectric wheelchair: at a time when I could walk a little bit with a stick andused a manual wheelchair for longer distances

So I started saving up a bit of my DLA each week. Mid way through my PhD when Icould no longer push my manual wheelchair and my walking had finally became sobad that I would have been housebound, I bought my first electric wheelchair. Ican't begin to tell you how wonderful it was. I felt free for the first time inmonths. I could leave my flat without pain, which meant I no longer had tolimit trips to only essential ones. I no longer spent weeks housebound, onlyleaving when people took me out in my manual wheelchair. I finally startedsocialising again, seeing people I hadn't seen in months, enjoying simplethings like a bit of banter over coffee, a "walk" in the fresh air,gossip over drinks after work. And (I suppose this is kind of important), I wasable to resume a far better work practise again. Although I had been workingfrom home, missing all the seminars conferences and meetings had taken itstoll. And talking with my supervisor by skype only was far from ideal.

It meant that I was able to continue and complete my PhD. A year later it meantI was able to go to a job interview and then work for 5 exciting and wonderfulyears as a researcher at university. And of course I continued to enjoy thefreedom I explained above. NONE of this would have been possible without DLA tobuy my electric wheelchair.

Now, PIP draft proposals look set to be far stricter and will for the firsttime take wheelchair into account at assessment. This will drastically reducethe amount of money you get if you can "walk" just 50 metres (evenusing crutches or walking stick) before you need to use a wheelchair. Thereasoning behind this is that you are then considered to be "mobile"regardless of the fact that many buildings and most public transport is stillunaccessible, not to mention problematic pavements, hills and bad weather!

This means that I almost certainly would not have been able to save up enoughmoney to buy my wheelchair. Housebound, totally dependent on the goodwill ofothers just to leave my own home, who knows what would have happened? I thankmy lucky stars that I had my DLA.

PIP is ill thought out and the evidence has not been heard. Please pause thislegislation so that terrible mistakes do not happen and wreck people's chancesat a good life.

Why We Can't Grin and Bear It Any Longer #spartacusstories #spartacusreport

2012-01-17T14:00:00.000Z

I am a carer. I look after my wife, who has had ME/CFS since August 2009 and has had some sort of disability since birth. She currently claims Disability Living Allowance (at higher care, lower mobility), Income Support (shared with myself), Local Housing Allowance and Council Tax Benefit. She has never been able to work beyond an attempt at a paper round in her teenage years which she had to give up, due to it making her ill. She requires a great deal of care – and this is where I come in. I push her to college 4 days a week – this involves 6 hours of travelling a day if everything runs on time, which it often does not. I help her with getting washed and dressed each day. I do the housework and ensure that she eats every day, as she requires prompting to do so and is unable to stand in order to cook. I take her to doctors appointments and pick up her prescriptions as well as doing a great deal of the household shopping. I contact various people on her behalf, as she has difficulties with communication – she is totally unable to use the telephone. She requires company pretty much all the time and I am also there to provide that.

As you can probably tell, she needs a lot of help. Because this amount of help leaves me totally unable to work I claim Carer’s Allowance and am on my wife’s claim for Income Support. The Government pay me £53.90 in Carer’s Allowance – considering that the minimum amount of hours that I must care for my wife a week is 35, the Government is currently getting a very cheap service. If a private carer were here instead of me, it would be much more expensive.

I am incredibly worried about the benefits shakeup that is most likely going to happen. The Government wants to scrap Disability Living Allowance and replace it with a “Personal Independence Payment” that would be far harder to claim than the current DLA – a benefit which has a fraud rate of just 0.5% and empowers disabled people to do things that they wouldn’t be able to without it. The Government want to get 25% of all people on DLA off it. The numbers do not add up at all.

As for Income Support, it is pretty much guaranteed that the Government will want to transfer the Income Support claim over to Employment Support Allowance. This would require frequent medicals. My wife has massive travel problems – buses make her panic and I am currently unable to drive. This would make getting to any medicals incredibly stressful and could lead to her becoming depressed again, something which she has not had to cope with since early last year.

If my wife does not successfully claim the Personal Independence Payment for whatever reason, my Carer’s Allowance will most likely get stopped. This will force me to look for work, leaving nobody at home to do the caring. My wife has tried living semi-independently in the past and this did not work, so the most likely outcome would be her having to move into a care home or similar institution. The Government want couples to be living together and them taking away my wife’s benefits would lead to that not being the case, not to mention not being able to afford the care home if they were taken away.

Needless to say, I am really worried about what the next month will bring and I call to any other carers, whether they are in my position or not, to make your stories known. People with disabilities are people too, they cannot be thrown aside because the Government wants to save money. We cannot just take any changes the Government want to bring in without a fight. We have to take a stand, not just for the people we know but for all disabled people.

This post was originally available here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

E's Contribution #spartacusstories #spartacusreport

2012-01-17T13:30:00.000Z

I always felt that we were Lucky in this country, that since I can no longer work I had the luxury of having my rent paid and enough to live off. Not enough to do anything exciting or flash just enough to pay my bills, put the heating on and not have to worry about the basics.

I noticed before the election all the promises about cutting down on benefit fraud about how big the deficit was and how many times 'back to work and making work pay' were being used.

Yes I was nervous, but listening to Mr Cameron on the steps of number 10 announcing that the most vulnerable and frail of society would be looked after I did genuinely feel reassured, being one of those that is to ill to work.

However it didn't take long before the onslaught started, we seemed to become the bad guys and cut after cut were announced. Its still sinking in, hearing everyone else's story has been both uplifting and depressing. The experiences of those failing medicals now proves this isnt some distance nightmare but a reality.

I do not kid myself that I will escape that I'm going get ECA or DLA again, and like many others it's just not possible to leave the house enough to even get JSA and there seems the very real risk in the future that I may be made homeless if I cannot claim sick benefits and cannot claim JSA either.

Like I said at the start I used to feel Lucky that as a disabled person I wasn't living on the streets in some far away country begging for my existence and already it seems like just surviving is going to be more difficult for so many people.

Life is difficult every day, the thought of having any more to deal with is extremely difficult. The thought of having to worry about money and paying the bills when there is nothing you can do about it is just awful. I won't be marching on the streets I'm to ill to go out very often; I'm terrified that we will be going back to a society were my quality of life can be much worse.

I cannot do anything to improve how difficult it is everyday, but others in government have the power to make it much worse.

My disability, my story doesn't matter much, there are thousands of stories all different yet each being asked to bear the cost for the sake of the rest of society. Ironically the very society we feel most excluded and set apart from.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Are You Sure It Won't Be You Next? #spartacusstories #spartacusreport

2012-01-17T13:00:00.000Z

I was once a dancer, an acrobat, a runner and a climber. My body flowed with the rhythms of the world. I moved with grace and beauty. There were struggles; the early effects of my syndrome did take their toll, but I did not give in, I was a fighter, I was tough. No-one would have suspected how bad things were, nor how much worse they were about to become.

As I became increasingly disabled I noticed that the way people related to me started to change. There were two particular, noticeable trends in this: Firstly able-bodied people began to treat me differently, oddly. To some I seemed to become invisible; they would stand in front of me as though I wasn't there, take over a table that I was sitting at, walk in front of me when I used the disabled button to open doors and walk ahead, leaving me behind struggling to keep up. To others I seemed to become hyper-visible; they would stare at me, speak sharply to me for no apparent reason and, worst of all, laugh at me. Even middle-class professionals could find the sight of me a source of immense amusement.

I found myself wanting to hide away, to withdraw from the human race. Life would have been pretty unbearable had it not been for the second trend: Whilst many able-bodied people stopped connecting with me as a fellow human being, there seemed to be an increasingly strong connection with other disabled people. This was a connection that did not need to be spoken. It could be communicated easily and effectively as we passed each other by. It could happen in a momentary passing glance, or it could be built and held in a long slow approach. I felt that I had missed something very special through my able-bodied years. I felt blessed to be connecting with these people now in this way. I wondered whether I would ever really feel that I belonged in general society again.

Although my disability began to worsen rapidly and I was advised to apply for DLA it took me two years to be able to complete the forms. The questions took me into the full awfulness of what my life had become and I couldn't bear it. Each attempt to answer the questions brought me to tears and an overwhelming sense of despair. I became depressed. Eventually, with support and the incentive of necessity and desperation I got the forms completed and submitted. Hearing that I had been successful and that I would be given financial help with the costs of my mobility and care was a turning point for me. Of course receiving the money was a huge help. I was able to get equipment including a mobility scooter and hoist, and could pay for some personal help. I was getting a life again.

The DLA meant more than this though. It helped me maintain a sense of connection to the able-bodied world, a sense that there was some understanding and care out there. I no longer felt so alone and rejected. My gratitude to my fellow tax-payer was enormous. My sense of patriotism grew. Wasn't this just a glorious caring country?

I can hardly express the hurt and disappointment I now feel in response to the various government threats to disabled and carer support. It is shocking, disorientatingly so. My head and guts swirl with it. Strength fades from my limbs with it. My eyes sting with it. I have been naive. The understanding and care that I believed in is an illusion. We are alone and rejected. There is no glory in a nation that acts in this way.

Like many others I now have to prepare myself for reassessment. Not the forms this time. This time it will be a physical scrutiny by an employee of a private firm, a firm whose mandate is to significantly reduce the number of disabled people who can qualify for help. I will have to submit my body, my crippled, bent and broken body to the critical, sceptical gaze of this employee. I don't know if I can do this.

If you are one of the able-bodied people who think this is reasonable ask yourself; Is this what you would want for yourself or for your loved ones? But you probably don't think this could happen to you do you? You probably think disability is for others, not for people like you.

Remember, I was once a dancer, an acrobat, a runner and a climber. My body flowed with the rhythms of the world. I moved with grace and beauty. I was a fighter, I was tough. No-one would have suspected how bad things were about to become.

Are you sure it won't be you next?

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Aunty Awdurdod's Story #spartacusstories #spartacusreport

2012-01-17T12:30:00.000Z

I am 45 .Every day I wake up in pain go to bed in pain and struggle though the day at work in pain -being disabled since 2004 has not been fun ,it hurts to stand ,it hurts to sit, it hurts to lie down,my sleep is not deep due to the pain and I quickly become tired.Its also is not cheap being disabled . During the last 12 months my mobility has declined and my osteoarthritis and other conditions have worsened, it takes me 8.5 mins to go from no pain to agony when driving , nearly an hour an a half to get myself up and dressed in the morning [compared to 30mins inc breakfast 12months ago ] , I rarely go out except to work these days and usually stay in touch with friends by the internet - Just to make life bearable since September I had to buy my own up /down bed cost £1,200 ,a riser recliner heated massage chair for pain relief and to enable me to sit in my living room and be able to watch tv [as recommended by my physio ] cost £1,300, clothing with no zips and shoes with no laces £200, incontinence pads £6 a month , the physiotherapist recommend swimming- so I now pay £500 a year membership so I can use a pool after work . During the cold snap I kept dropping things I could not use a phone for example as my fingers were so stiff and painful- it cost me £350 for less breakable phone with touch screen & voice to enable me to make calls and text without using my hands . The special diet for one of my health conditions puts an extra extra £30 a week on my food bill. I could do with help for house hold chores but cant afford it on top of recent expenditure so I struggle and the trip hazards accumulate and increase my risk of falls . I pay £25 a month for a parking space at work -because I cant park further away and walk or cycle in. I'm lucky to still have a job but with cutbacks for how much longer?
Despite all the above I only just got a blue badge in January and when I apply for DLA I shall only qualify for the lower rate of mobility. My point is to qualify for DLA your life has to to already very limited by your disability and you probably already see a multitude of doctors and care professionals who can verify that you need help - to take support away from people who are already doing so much for themselves it to take away their hope and ultimately their human right to live as normal a life as possible. Cutting benefits for the long term disabled may actually increase the effect of their disability on their lives. Is this morally right in a country where we are in the G7 and the DLA bill is less than the war in Afghanistan or the banks bail out?

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Diana's Story #spartacusstories #spartacusreport

2012-01-17T12:00:00.000Z

We've received many incredibly comments left on entries on this blog. People sharing their stories and reaching out. I'm reposting some of them on the blog because they deserve attention too. I'd like to thank everyone who has commented.

Diana

I've been severely disabled now for 9 years and have had 5 hours of care a week. Last year Soc services reassessed and tried to cut it to 2 hours saying despite the fact I can't stand up to deal with pans or boiling water, it was quite acceptable to prepare food on the floor. I argued my case and got the 5 hours back.
Last week the council reassessed my finances (I had never had to pay before as we didn't have enough income). Now that my husband has retired and our income has dropped by 2/3 I now have to pay a massive amount towards the care- saying I have to use part of my DLA and whereas they used to disregard my husband's "earned" income they now include his pension in our income. They refused to let me cut hours to match what they will pay and if I refuse to pay this extra amount (which I can't afford) they will stop ALL payments as from Monday. I have to give my carers a week's notice but they won't pay that either. They refused to accept most of my care expenses such as the cost of having food delivered because I can't get out to shops but others because I don't get receipts from people like window cleaner, lady who does ironing, people who weed the garden for me etc. So basically they said I was lying.So as from next week I have NO care at all because I simply can't afford to pay this excess amount and despite the fact they have assessed me as needing that care..
No warning, no covering the notice period just a bland "we stop all payments for care on Monday".
I am now in a massive flare up of pain which will only get worse as I struggle to do the things I had help with.
Just down the road from me is a 91 year old man with a fractured spine; bedridden and again with no care at all because he couldn't afford the "contribution" they expect him to make. His wife is in a dementia home and he relies on neighbours to bring food which can be left cold at his bedside. Cleaning, laundry, toilet needs and bathing he is expected to see to himself.
These cuts have already badly affected my mental health, both from the loss of my carer who has been coming for 10 years and is the only person I see from outside the home and from fear of how I am going to manage plus the upset of trying to argue with them. They just don't care.
If they then start reassessing my need for DLA life simply won't be worth living. I don't get out now- what have I to look forward to?

My dad, working through the pain #spartacusstories #spartacusreport

2012-01-17T11:30:00.000Z

Today I am not going to write about me. I am going to write about my dad.

My dad used to be a plumber. He was good at his job and worked very hard to support us. In 1992 he seriously injured his back while lifting a boiler and suffered a prolapsed disc. The injury left him unable to sit or stand, and able to move around the house only on all fours. For months after his injury he spent most of his time in bed. Since my brother had just been born and I also have two sisters, my mum was caring for him and looking after us all. I don’t know how she managed it – I certainly wasn’t any help, I was glued to my computer the whole time.

My dad was sent for surgery in mid 1993 and he had a micro-discectomy to trim the disc back. It was successful, and he was able to walk again although with some discomfort. Not all was well though, and scar tissue formed and started to press on nerves in his back. Although physiotherapy helped, that remains a problem to this day. He was also found to have legs of differing length and a spine that is deteriorating, which has led to upper back problems that prevent him lifting much with his arms. He is now two inches shorter than before his injury. Ever since 1993, then, he has been able to walk at most about forty metres, with the use of a walking stick, before experiencing severe discomfort, i.e. pain.

In 1995 my dad started to study to fill the time. He started a BTEC course in computing and electronics at the local college, where he was allowed to go straight in to the second year because of experience from before he became a plumber. He went on to study for a degree in computing and multimedia on a mostly distance-learning based course. On the occasions when he did have to attend classes he was forced to travel on the bus for more than an hour in each direction, something that was very uncomfortable for him.

He eventually found it difficult to continue on the degree course because of his dyslexia, and so cut it short of a degree but left with a DipHE. He then went on to take a part time job as IT technician at the local college, even though he was not expected to work and could have continued to receive Incapacity Benefit. At that time he claimed Disability Living Allowance and since he clearly could not walk any distance or lift anything, or carry out activities necessary for living, such as cooking, he had no trouble getting it. With the help of DLA he acquired a Motability car which meant that he could at last leave the house without enduring pain from using public transport.

That job ended and was followed by a brief period of being too ill to work again but – again without being required to – he applied for a job repairing computers at the headquarters of a major computer company that was based locally. He was rejected twice but on the third application he enlisted the support of a disability officer at the job centre. The disability officer managed to get my dad into an interview and persuade the company that they would receive support for hiring a disabled person. He got the job.

The help that he received at this point was excellent. The Access to Work scheme provided him with a top of the range chair with adjustable supports all over the place, which made it possible for him to spend more time sitting to work. The company built – yes, custom built – a workbench in the computer repair workshop which placed equipment at exactly the right height. He did still had to work around some things such as getting colleagues to lift heavy computers, reaching for books on high shelves, and finding his own trolley to transport the computers. Even with all the help and adjustments working there caused him plenty of pain and detracted from his health. He loved the job though, and remained there for about ten years until the company went bust. After that he was unemployed and looking for work apart from six months spent repairing iPods, a job so low paid that he brought in less income than when on Job Seekers Allowance.

Just over a year ago my dad and I set up a computer repair business together as our only real option for finding work. Both of us are unemployable, he with his inability to walk or lift and his severe dyslexia, me with my unpredictable working hours and occasional weeks or months off sick. A little government help has been available, particularly Self Employment Credit, but mostly we have created the company from scratch with no money to invest. Unfortunately, since our new business is not providing any income as yet, my dad has had to take a part time job collecting cars that have finished their lease and so is less able to focus on the business. He loves repairing computers though, and after a day driving he will come back to our office and spend hours on that too.

And so to my point.

Despite being visibly disabled enough that he could spend his whole life receiving Incapacity Benefit and DLA, my dad has always chosen to work. Working has caused him pain and detracted from his health but he does it anyway. He pays his taxes and his National Insurance, and did so for many years before and after becoming disabled. He has received help in return: it is DLA which has enabled him to work. Without it, he would not have a car, and without a car he would not have been able to travel to any of his jobs. There is more that could be done – he would quite like a folding mobility scooter which would allow him to do more at his driving job, since he misses out on some available work through being unable to walk to cars in the yard to move them. Such a folding scooter costs about one and a half thousand pounds, and he has no hope of getting one. Instead of any government help to get this scooter, which would lead directly to him working more, earning more and paying more tax, he is instead facing an uncertain future. DLA is likely to be replaced with a new benefit that is designed expressly to cut government expenditure on such benefits by a third. He would be re-assessed, and faces a loss of at least part of that income, which puts his car at risk. If he does lose that car then he will not be working any more. He will be stuck at home. My mum also relies on that car as she is disabled too with various complications of diabetes, so this will be harmful to both of them.

Government cuts to disability benefits are likely to prevent my dad from working and become what the Daily Mail would term “A burden on the tax payer.” Does that make sense to anyone except a conservative government minister?

the original post

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Denise's Story #spartacusstories #spartacusreport

2012-01-17T11:00:00.000Z

Denise:
Sadly these 'reforms' have been in the pipeline for a lot longer than this government and as always all done with stealth - and as they affect a group of peoplle who are frequently not in a condition to loudly and visibly campaign they went largely un- noticed despite charities protesting and sites like Benefits and work doing a lot of good work. The press also seem to be largely ignoring the issues it will create for so many disabled people who are currently living life with dignity and will mean that for many the loss of independence will mean they cannot work or study so will be a greater burden on society as well as being in
greater pain and discomfort. This will almost certainly happen to our daughter who has a rare and misunderstood disability and DLA has helped her lead a much happier life, but she will most likely lose it, which makes her feel as though she is viewed as lying about how affected she is. We have a wonderful doctor who is wholly supportive, however government and the form checkers at the DWP appear to think they are more qualified to decide how much life is affected!

Robert:

Lady Grey-Thompsons DLA story #spartacusreport #spartacusstories

2012-01-17T10:57:00.000Z

http://www.guardian.co.uk/society/blog/2012/jan/17/disability-welfare?newsfeed=true

In a Times report (behind paywall) Lady Grey-Thomspson, an independent crossbencher, said the government had "gone too far" in its reforms.
DLA had transformed her life, she said, enabling her to go to university and secure her first job. She said she was "terrified" about the impact of the changes, which could see 500,000 sick and disabled people "struggle with day to day" life as a result.
She told the Times

Being disabled is more expensive - it costs more to travel to work, for aid and adapatations, to add a ramp to the house. I have used the disability living allowance to buy cushions worth £300 that prevent pressure sores.

Something needs to change - just not like this #spartacusstories #spartacusreport

2012-01-17T10:30:00.000Z

Friday marks 1 month until the end of the public consultation on proposed changes to the DLA (Disability Living Allowance). This is my small contribution to a blog swarm calling for these changes to be reconsidered. Other entries can be found at the One Month Before Heartbreak blog. Please go and read it, share the link. If I have learnt anything in my life it is (in the immortal words of High School Musical) we’re all in this together. We need to stick up for each other. Every time I see #solidarity on twitter, I breathe a prayer... “first they came for the communists”.

If I need a special reason to care about these cuts to DLA it would be this : I am disabled. It’s not something I particularly enjoy talking about, but there it is. I have no nifty name for it yet – whatever the ‘it’ is that’s slowly ruining my joints and my autonomic nervous system. I have no name for the ‘it’ that is slowly eroding my independence, but it is there, and it costs money.

I’m doing ok for now. My parents support me financially, my partner gives me the practical day-to-day help that I need and I can make it into uni most of the time – whether or not that leaves me with energy / painfree hours to study, cook, clean etc is another thing entirely. DLA payments would give me some of my independence back, but now there’s no point. Not until this gets sorted out. It’s far too much of a song and dance to go through for nothing.

I do not need to tell you all, again, in how many different ways these cuts will affect us. Nor do I need to remind you that we could probably find a good deal of that money if people would only pay their damn taxes. That these cuts are inhumane, ill-targeted and exploitative is clear; what makes it worse is that the system desperately needed reform – just not like this.

We live in a society where bogus has been synonymous with asylum seeker, where disabled people are trying it on - for money or sympathy or to park slightly closer to the supermarket. Everyone’s motives have to be questioned, noone can be trusted, scepticism becomes self-defence. Even if we could reverse the cuts, right now, today – what would we be left with?

Something needs to change – just not like this.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

The World Is Watching #spartacusstories #spartacusreport

2012-01-17T10:00:00.000Z

I’ve been alerted to this by my friend Steve – his post on ME is here – and thought I should really add my two pence as someone who is classified as ‘disabled’. To explain: The consultation on the reform of the Disabled Living Allowance ends on Valentine’s Day, so One Month Before Heartbreak has been set up to collate blogs from disabled people talking about their experiences, whether they have received DLA or not.

I’ll keep it short, I promise. I just couldn’t not say anything.

I’m classified as ‘disabled’ at University in a couple of ways.
1) I am high-frequency deaf, and have been all my life. I can’t hear bus bells, birds singing, most alarm clocks, fire bells… I also have a slight speech impediment that developed because I couldn’t hear the difference between certain letters.
2) I was diagnosed with clinical depression in late 2006 (incredibly long story but the short version is I was on medication on and off until January 2010)
3) I contracted glandular fever in May 2008 and spent the next 2 years constantly ill. Glandular Fever, also known as mononucleosis, or the ‘kissing disease’ (though I personally didn’t contract it through kissing anyone! Mine was much less pleasant – I almost certainly caught it through travelling on the Tube across London every day…) It has affected my life at University to a great extent – though thankfully, this has not developed into ME as is sometimes the case.

I feel like a fraud discussing Glandular Fever or depression as disabilities (contentious issue, I know), so I’ll stick with something I won’t get flack for – deafness. A lot of people who know me will say “Wow, I never knew she was deaf!” – I get told that all the time. I don’t want to make a big deal out of it or label myself as deaf, because I feel that it detracts from me as a person and I don’t want it to get in the way really.

I am not profoundly deaf but it has affected me as I’ve grown up – it made me very reclusive as a person and made me shy away from group situations. At primary school, I was forced to wear hearing-aids at school by a well-intentioned teacher, and bullied relentlessly for it. I will always remember being chased around the playground by the school bully, who caught up with me, yanked them out of my ears and threw them on the floor. Not much of a surprise that I absolutely loathe them and I do everything to avoid actually explaining my deafness to people (though oddly enough i find that people just think I am stupid). I just get on with life, and if I miss things, or people think I’m stupid… It’s their loss, I guess.

It’s an ‘invisible’ thing – in fact, everything I suffer from or have suffered from is ‘invisible’ – it’s not like having a broken leg. It’s not like being in a wheelchair. People can see wheelchairs and casts, and they treat you differently for it – whether positively or negatively. Does this make it harder for me? I can’t really decide.

On the one hand people don’t judge me immediately. In fact, people are often horrified that they don’t know “Oh, I’m so sorry! I had no idea!” (Well, I didn’t expect you to be a mind reader!), and then shock turns into admiration at the fact that I have “coped so well”.. And whilst I appreciate the sentiment, I am hardly going to give up on my dreams because I’m deaf – being classed as ‘disabled’ doesn’t mean I am stupid, thankyouverymuch.
On the other hand, others not knowing means I spend a lot of time putting up with people who don’t believe me, or explaining it to people. “How can you be deaf if you don’t wear hearing aids?” Ohh, bless you, you only understand stereotypes. SURELY I can’t be deaf because I don’t have hearing aids. I clearly must be a compulsive liar! Throughout school if I missed registers, substitute teachers would shout “Are you deaf or something?!” – Um, yes… I am actually. You can go and fetch my school record and it will show you exactly what I can’t hear..

There is still a stigma surrounding disabilities, especially the more invisible ones like mental illness. They’re rarely talked about, though so many people suffer from one form of mental illness at some point in their lives… What worries me is that those discussing and making decisions are so far removed from reality and real people that they can’t even begin to understand what being disabled is like. To me, disability doesn’t mean you are UNable to do things. It just takes you longer, takes more effort – and more importantly, requires more patience and understanding from other people.
How can they make a decision on DLA reform when they have never had to fight twice as hard to achieve the same as those who aren’t disabled?

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Will The Government Allow Me To Live? #spartacusstories #spartacusreport

2012-01-17T09:30:00.000Z

I like to think that I’m a fairly intelligent person, and yet one thing continues to baffle me; the idea that disabled people enjoy claiming benefits.

I wish I could gather all of those misguided, ignorant, self-righteous creatures together and tell them this – no disabled person would be choose to be disabled and dependent on other people, whether those people are our family, friends, or tax payers.

Yes, some people claim benefits unjustly, but here is a key point: those people are not disabled. Can you see the difference? Those people, who are in the minority, despite what the scaremongering in the media might lead you to believe, choose a life of sponging off of the state, despite the fact that they could work for a living.

Disabled people have no choice but to be disabled.

I desperately want to be able to work. When I listen to my friends discussing their duties in the workplace, their colleagues habits (good and bad), even the irritating person on their train that morning, I feel a pang of envy. They are out earning their livings, they are contributing, paying taxes, they have a sense of purpose and of achievement. When they get their wages each month, they know what they’ve done to earn it. I would love to experience that, to know that I’m a contributing member of society. I don’t need any more “incentives to work” than these. I just need to be able to work.

Instead I am reminded every day that a section of society voices the worst opinions I have of myself: sponger, worthless, a drain on society.

You may be wondering why it is that I don’t work; it’s because I was born with a genetic skin blistering condition called Epidermolysis Bullosa (EB), of which I have the Recessive Dystrophic sub-type. Chances are, you’ve never heard of EB, so I will enlighten you. Due a lack of connective proteins in my skin, the slightest friction or trauma causes it to lift, either in to fluid-filled sacs of blisters, or to detach completely to leave raw wounds. Imagine developing a third degree burn, simply because you turned over in bed, or got dressed, or misjudged your footing. That is the effect of EB.

Having been rampaging around my body for the past twenty-four years, EB has cost me: the sight in my left eye and caused great photosensitivity in the right, the majority of the dexterity in my fingers, my toes (which have fused into a solid mass on each foot), the ability to walk more than a few yards at a time and the ability to swallow (meaning I need a feeding tube in my stomach. On top of this, frequent systemic infections, anaemia, nerve-damage causing restless legs and extreme pain, and the amount of time my wound care takes every day all leave me very tired and lethargic.

EB is unpredictable; I often wake up with corneal abrasions, caused by my eyelid tearing the skin on my eyeball, leaving me blind and intolerant to any light for days. I can suddenly feel very ill due to an infection, or experience a huge amount of pain in a wound and be unable to move. None of these things are conducive to doing a good day’s work. I spend a lot of time at the hospital seeing specialists, and being admitted for surgery and procedures.

Now, tell me. Would you employ me? Would you give me sick pay for all of this time? Would you adapt your office, or supply me with an assistant to act as my hands and feet? Could you afford to pay someone who will be absent so often?

No, of course not. How could you?

But do you understand that this is not my ideal life? That I’m not living the life of Riley on the taxpayer’s (including my parents, sister and extend family) money? It’s worth noting that, whilst the NHS is a crucial part of my life, I have to pay for dressings, treatments and supplies that aren’t covered by the drug tariff.

At home, even though I’m an adult, I am still dependent on my mother, who is my 24-hour a day carer. However much we love each other, however much we laugh together and just get on with it, there is an inherent feeling of humiliation at having to be put to bed, helped into your underwear, even sometimes helped on to the toilet in your twenties. There is also the knowledge that, however much it may be denied, you are a burden to those you love. Even my friends have push my wheelchair, cut up my food and help me get my trousers down on nights out!

You might point out that I’m blogging, that I tweet (yes, Nadine Dorries, I’m admitting it!), that I go out with my friends, that I speak for charity (in order to raise funds to cure EB, which would save tax payers money!), and I don’t deny any of it. But I can only do these things because they are worked around my disability; I have no deadline, and no one is depending on me. If I need to have a sleep half way through writing something, I can. If I need to write spitting in a bowl because I can’t swallow my own saliva, I can. If I need to cancel at the very last minute or leave at a second’s notice, my friends and the charity understand. I could not do those things in the workplace.

When you think about it, it’s strange that benefits are so called. Are they meant to be the benefits of being disabled, the upside to being trapped by your own body? I can assure you, all of us who claim them legitimately would gladly swap for them for a job, for security, for freedom.

Maybe they should be called compensation? No one questions someone being compensated for an injury that keeps them away from work, even if it is caused by an accident. Well, what happened with my genes was an accident, and it caused me injuries that keep me away from work. But disabled people are increasingly begrudged the money they need simply to survive.

I’m really not in the habit of bemoaning my lot. I have a wonderful family and friends, a roof over my head, medical care, and food on the table. But there is a huge amount of injustice in the air right now, and those who will suffer most are those who are not able to fight against it. I have a voice, and I can use it, and so I want to support those who aren’t, for whatever reason, as fortunate as I am.

David Cameron has claimed that “we’re all in this together”, but these cuts won’t affect him in the slightest. He is not relying on friends or family to enable him to live from day to day. He is not facing the prospect of having his care funding cut, and being left to lie in his own urine and faeces all night, because his carer has been replaced with an incontinence pad, nor is he looking at spending every day of his life within a respite home, because the removal of his mobility Disability Living Allowance component has been withdrawn and he can no longer afford an electric wheelchair. He will not be a working person, taking over from the agency carer the local council can longer fund. He won’t feel suicidal because he is being made to feel that he doesn’t deserve to live, or because he simply does not have to means to to. These are real issues being faced by people with disabilities.

So please, the next time you see a story about the ConDems cuts on benefits in the newspapers and you tut about these disabled people draining the state, please remember three things:

1) Disabled people aren’t spongers, they are people who truly need the money, and desperately wish they didn’t.

2) When you go to bed tonight, you won’t need someone to dress you, or clean your bottom, and you won’t be left to lie in your own defecate. You will be free to do as you please.

3) Not all disabled people are born that way, and many are disabled due to accidents and illness, and you may find yourself in their dependent shoes one day.

On 14th February 2011, the ConDem government will make their final decisions about cuts to Disability Living Allowance, the “benefit” that helps disabled people to fund the expenditure relating directly to their disability, whether care or transport (paying for cabs, an adapted car, or even simply a wheelchair). This decision will impact upon disabled peoples’ ability to have the best quality of life they can possibly have in their various circumstances. If cuts are made, many disabled people will be forced under the poverty line, living lives as second class citizens.

In conjunction with The Broken of Britain, a non-party political action group for people with physical and mental disabilities, and their carers and supporters, One Month Before Heartbreak are giving a voice to those who will be affected by these cuts, and bringing their plight into the public conscious, and hopefully conscience. Please visit their websites to see how you can help us fight for people who might not be able to fight for themselves. You never know, you might need them to fight for you one day, too.

Thank you.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Disability cuts don't affect me #spartacusstories #spartacusreport

2012-01-17T09:00:00.000Z

In the New Year’s Honours list, MP Anne Begg was made a Dame for services to disabled people. Herself a wheelchair user, there was initially outrage when media outlets proclaimed ‘Disabled MP made a Dame’, the implication being she was made a Dame for being disabled rather than for her work. Hearing her comments on the news, that disability is not about being unable to do things, it’s about doing what you can, and that her wheelchair had liberated her, I turned to my family and said, “Well, she sums up exactly what I feel.”

I have been in an ongoing battle with a family member in recent months, over my choice to refer to myself as disabled, and my vocal support of disability rights. It’s not nasty, it’s just the elephant in the room. Unfortunately they cannot come to terms with the fact that I am affected with multiple conditions that cannot be made better. They’ve not got anything against those with disabilities, but they do buy into the belief that disability is all about wheelchairs and serious mental impairments.

Personally, since accepting my limitations as disabilities I have never felt more free. Instead of making excuses and feeling like a failure for all that I can’t do, I am proud of myself for all that I can do. In my mind, and indeed, Dame Anne’s, that’s what disability is about – being empowered to do what you can, and not being judged for what you can’t do.

I’m not receiving Disability Living Allowance. I never have. I applied for it in 2001, when I had been diagnosed with ME/CFS for 2 years (having been ill for many years before diagnosis), and I was refused. My Dad assured me that that happened to everyone, indeed it happened to his father who was unilaterally paralysed from a stroke. My dear Grandpop had admitted to being able to make himself a cup of tea. Apparently, making tea whilst semi-paralysed is equal to being able to fully care for oneself – to get out of bed and dressed without assistance, to get in and out of the bath, to cook a full meal etc. With my Dad’s assistance, he successfully appealed and received higher rate care and mobility for the rest of his life, which he used to pay for help. He also got a mobility scooter so that he was able to get out and about. When I was still able to walk home from school, I would often see him on a Thursday afternoon, happily heading for the local shops to collect his pension and buy sweets. My cousin even drew a fantastic caricature of Grandpop on his rechristened “Healy-Davison”, the object that made the biggest impact on his last years of life. On the night he died, Grandpop called his sisters, telling one of them he was going to go out on his scooter, despite her protests that it was late, to see the sun set. I don’t know if he actually went out, but it’s a nice memory.

I never did appeal for DLA for myself though. I decided that at that point I ‘wasn’t disabled enough’ and left well alone. When I was diagnosed with Ehlers-Danlos Syndrome I again considered re-applying, but again, decided I wasn’t at a point to need it – I was working, had come off Incapacity Benefit, why did I need benefits anymore? I made a decision that should I become unable to work in the future, or needed specialist services or care then I would apply. I’ve stuck to that. For now, I am receiving enough benefits, more connected to my status as a single-parent having left an abusive relationship to not warrant needing any more. I don’t need any specialist services for now, I own a car, and I work part-time. That’ll do me for now. Besides, I don’t know where things are going with this, and frankly, I could do without all the hassle of filling in complicated forms and attending stressful assessments.

But there are thousands of people out there who are already at the point I hope never to reach. They are in need and the planned cuts and reforms of DLA will affect them. I have already said that I believe that disability is about doing what you can, and for many in receipt of DLA, that’s exactly what it is used for. DLA enables people to afford care, adaptations, aids, transport and other services that empower them to live their lives, to just do what they can.

When you’re not the one making the decisions, faced with spreading the budget as thinly as possible to make everyone happy, it is all too easy to criticise and get angry. But it is important to support the disabled, and as Dame Anne says, not to exclude them from society. DLA is not a work-related benefit. The vast majority of claimants cannot be forced to work by cutting them off. Indeed, for some it is the thing that enables them to afford the support to keep them working, productive and happy. It is estimated that half of working DLA claimants will have to give up work if the proposed cuts come into play. Ironically, taking away DLA will cause many to become the stereotypical ‘scroungers’ that the media loves to hate. Far from being empowered to take control of their lives, many will be left unable to get out, unable to access services. The upshot of this being that this may result in less people being able to contribute to society in a variety of ways, impacting on other areas of the system.

No, it doesn’t affect me. Not yet. But as we’re all in this together, as they are so fond of telling us, I will speak out about it. And if we’re all in this together, why disempower so many?

Also online here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Jim's Experience #spartacusstories #spartacusreport

2012-01-17T08:30:00.000Z

I’ve suffered with mood disorder, including major depression, for most of my life. I’m 30 now, but mental illness has halted my personal, social and psychological development – my “maturity” I suppose you could say – a number of times, to the extent that I feel and sometimes appear to be much younger. (Sadly not physically. However mad I may be, I don’t believe I can halt time… Yet.)

I used to work for the Guardian, once upon a time. After about four years in employment at one of the most highly regarded newspapers in Britain, poor health was beginning to affect my ability to work. The dip in my performance was noted, but my bosses were unsure how to help, not to mention ill-equipped in both training and resources. I don’t blame them. Not having been in this situation before, I didn’t know how to help myself.

Success and performance have always been important to me. Knowing I was failing, My mental faculties deteriorated further and in 2009 I had a series of breakdowns. It was one of the darkest periods of my life. In a very sorry state of health, mentally and physically, I left the Guardian. I left what had once been my dream job. I was literally broken.

But there must have been a medical plan? Yes there was. But it specifically dealt only with physical injuries and illnesses. If I’d broken my hip or neck, developed diabetes or cancer, there would have been insurance to put me on the fast track to Wellville, or at least help to reach a stage where I could be of some use again. But mental illness, in the eyes of the medical policy, was not a physical illness. Therefore it wasn’t really an illness. Private medical policy couldn’t (or more accurately wouldn’t) save me.

I was saved – and continue to be – by the extraordinary and selfless efforts of the community mental health team (CMHT) at St Giles in Southwark. But not before 6-8 months of hellish worry, potential homelessness, and waiting. And waiting. And this was during what we now laughingly call the “good old days”.

The government has already forced the hand of community mental health care bosses in Southwark. A shocking £3.7 million must be sliced, sluiced from the budget in two years. This means between 500 to 800 “clients” will be “lost”. I deal with some of those losses in real terms (I am mainly talking about death), and you can hear it from the horses mouth (a Southwark care worker) in this post here. St Giles’ resources will suffer, and it’s too late to save it.

But it’s not enough. More money must be cut. Not from people who might need lifesaving medical help in the future. Now they’re looking to save more money by taking medical help away from people already in the system. These are people who’ve already proven to doctors and specialists and therapists that they need it.

The coalition are determined to reduce the numbers claiming Disability Living Allowance (DLA) by 500,000. There’s too many sick people. And some of those have gotta be fakers, right? Wrong. Disability Living Allowance (DLA) is one of the hardest benefits to claim, which also makes it one of the hardest to defraud.

The official Department of Work and Pensions fraud rate for DLA explicitly states that only 0.5% of the total number of claims are fraudulent. Half a percent. Rest assured that despite whatever the right-wing media would like you to believe, there aren’t legions of scumbags with their feet up all day while you hi-ho off to your office job.

I accept that economically, mistakes were made and someone’s got to pay the piper. But DLA is not allowing anyone an outlandish lifestyle (unlike say, bankers’ bonuses). It merely allows a small number of people in this country a life. It allows them to live. That’s what the L in DLA stands for.Living. As in “not dying”.

Getting it took most of last year and remains one of the hardest things I’ve ever done. But I wouldn’t be here today without it. I couldn’t do much of anything while I was waiting for treatment, let alone work. Tiny allowances like DLA bought me a bit of time until I could receive treatment. It makes it possible to continue attending my treatment. At this point in my recovery, literally everything depends on it.

DLA makes it possible for this site to exist and for me update it, so when I do go back to full-time work I’ll have a place to showcase my skills to potential employers. If it had been denied me (in the unlikely event I was still alive), I’d have nothing to show for the last terrible year. It has actually improved, in already visible terms, my chances of employment. Isn’t that what the government wants? If so, DLA and other sickness benefits are fit for purpose and don’t need changing. I’m living proof.

By Jim Boeth, Originally Posted Here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Objectively Disordered #spartacusstories #spartacusreport

2012-01-17T08:00:00.000Z

What’s in a word?

Quite a bit as it may turn out.

With government spending cuts in the news we’ve heard a lot about what is and is not considered “fair” of late, but for people with disabilities the key word may soon turn out to be “objective”.

Do you know what it means?

Are you sure?

The Emergency Budget 2010 explained that we needed “objective medical assessments” to bring down the bills.

1.103 The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.

The policy costings were even more clear…

REFORMING DISABILITY LIVING ALLOWANCE
Measure description:
This measure will introduce an objective medical assessment and revised eligibility criteria for both new and existing working-age claims for Disability Living Allowance, to be rolled out from 2013/14. The assessment will follow a similar process to the Work Capability Assessment (WCA) used for claims to Employment and Support Allowance, with a points based system to assess eligibility to the different rates of the benefit.

All well and good, you might think. It’s only right that taxpayers have the reassurance that our disabilities have been proven to the satisfaction of a doctor.

Indeed, that was acknowledged over a decade ago when private firm ATOS first won the contract to send “independent” GPs around to the home of DLA claimants to make sure they were genuine. The opinions of your regular GP can be too easily swayed, whereas governmental influence as paymaster in no way compromises the independence of an ATOS doctor. Their new contract for Work Capability Assessments has helpfully been rewritten to only stipulate the involvement of a “medical professional” which can be anything from a Spanish physiotherapist to a Bulgarian midwife (no news of any vets as yet but that’s probably only a matter of time) and now you have to go to their offices. Sometimes these are even accessible.

So no, it’s not about obtaining a professional medical opinion it would seem, otherwise we’d simply accept a Consultant’s report like the Swiss system does. If you’re a regular SkepticLawyer reader you may now be thinking disability… objective… DAMAGES! (give the law nerd a cookie)

When legal damages are assessed they are usually assessed objectively. However, ONE type of damage – pain and suffering – is assessed subjectively in personal injuries matters (which would seem appropriate for a benefit relating to disability). 

“Subjective” criteria would be the the description of the pain and suffering experienced by the victim in his or her own words. ”Objective” criteria would be the description of the likely pain and suffering experienced by the victim BY A THIRD-PARTY, a “reasonable” non-specialist (yes, that man on the Clapham omnibus for example).  

There would thus be no barrier to using OBJECTIVE presumptions about the nature of restrictions to the life of a disabled person (levels of physical adaptation for example) rather than consulting the SUBJECTIVE experience of the individual disabled person themselves (details of accessibility in their own particular work and/or living environment for example).

Personal case in point, there is an “accessible” train to my local FE college which means that I can access study. In actual fact accessibility has only been provided for wheelchairs, the scooter *I* own has been declared “too large” by train company staff who have also refused to let me use the bike space where it *WOULD* fit. So who is correct, the train company that says their service is accessible or the disabled person who says it is not? Obviously some level of standardization is desirable otherwise disabled adaptation becomes unaffordable for transport companies, but as a benefit claimant should I be financially penalized for failing to take up a course at that college when I’m unable to get there?

And don’t even get me started on what does and does not constitute a “medical” need (just ask someone who has managed to get an electric wheelchair out of the NHS, if you can get them to stop swearing for long enough).

Fellow “spoonies” and other people with invisible disabilities can only hope that after the Harrington Report their DWP Decision Maker doesn’t go beyond the normal rubber stamping of the mock medical and google Merriam-Webster to support their interpretation of the legislation …

Definition of OBJECTIVE
1c of a symptom of disease: perceptible to persons other than the affected individual — compare subjective 4c

Although that WOULD cut the DLA budget by the desired 20%…

===
* In DaveBath-speak that’s “fractally wrong”, ie. wrong at every possible level of magnification. See also Catholic teaching on natural law and same-sex attraction, discussed by regular commenter Lorenzo at his blog http://lorenzo-thinkingoutaloud.blogspot.com/2009/07/what-is-it-to-be-human.html">here.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Just A Ride's Take #spartacusstories #spartacusreport

2012-01-17T07:30:00.000Z

As I have said before, my skills at discussing politics and coming out of said discussion not looking like a complete idiot are slim to none. But this weekend there is something happening that should be widespread and should be taken notice of.

The whole One Month Before Heartbreak is a chance for the blogging community to make a statement about DLA (Disability Living Allowance) and the proposed governmental cut that are being discussed in the consultation that is due to end on February 14th (A joke surely on the part of some Government planner… why should disabled people have a good day when they know that the rug could be pulled out from under their feet at any time.. but hey…)

The OMBH weekend has been originated and is being organised by The Broken Of Britain website, You can find the post that explains what is happening by clicking this >>>LINK<<<. A master list of stories and blog posts contributed to the Blog-Swarm can be found >>>HERE<<<.

I have told my story of my dealings with benefits before you can read that post here.

Nothing much has changed since I posted that, with the exception of being 6 months closer to and ESA application. Something I dread with every passing day. I am still in receipt of DLA only the lower rate mobility component. I get under £100 a month but without that £100 I would be more housebound than I am now. If you don’t have the time to go over the second largest post on this blog the cheat sheet goes like this…

I have Bipolar Affective Disorder Type 2
I suffer from Anxiety when outside of the house
I can be pretty dangerous (To myself) if I try and negotiate major roads by myself. I have very little regard for my own safety.
I need medication to leave the house. I usually take two extra Lorazapam before I leave the house, this is just to make encountering crowds mildly bearable

It’s much more complicated than I have abridged it too but for brevity I have just narrowed it down to those 4 points. When I filled out the DLA forms it was a nightmare and seriously depressed me at just how much detail they wanted from me. It shouldn’t have surprised me as I had filled out the forms before but they seemed to get more difficult with every reapplication.

If you have a disability and read this then I hope you are in a good place and have the support you need to help you get what you deserve.

If you are fully able bodied (Mentally and Physically) then I prey that you never have to go through the degradation of having your life scrutinised just to get a little help making your life easier. I say this because When I came back from America in 2000 I never imagined that I would be put in the position of having to claim Incapacity Benefit and DLA just to pay my bills. It came from No where and if it wasn’t for some great people along the way I would probably be on the streets now or quite possibly dead.

These Benefits that the current Government are proposing to cut are a life line to many. In these times of job cuts and bad economy now is not the time to be cutting people incomes just because it seems to be a quick fix to save a little money.

As I have said before I don’t do politics normally and normal service will be resumed shortly, but I hope you take a moment to read just one other story bought about by the One Month To Heartbreak campaign this weekend, just maybe it could change your mind on a few things.

Until Next Time…

This post on It's Just A Ride

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Not The Life I Planned #spartacusstories #spartacusreport

2012-01-17T07:00:00.000Z

1 Month Before Heartbreak – a blogswarm to raise awareness of governments plans to reform DLA. Well more than reform, abolish and replace with something called a PiP which would have no mobility component and the same kind of discredited testing for eligibility that is used for ESA claimants. More money for Atos, less money for the sick and disabled.

I didn’t think that I would get involved. Not that I didn’t want to. Just that I wasn’t sure that I had anything else left to say.

Or maybe I just didn’t have the energy left to say it.

Or maybe I thought that I somehow deserved the opprobrium of the public…

…and the Sun…

… And the Daily Mail…

…And politicians.

After all I haven’t worked for several years and I claim Income Support and DLA. Not Incapacity Benefit, but Income support on the grounds of incapacity. I was self-employed when I became ill, so with time out in education and to have children, I did not have enough contributions despite having done some kind of work or another since the age of fourteen.

Claiming Income Support makes me even less ‘deserving’ in they eyes of some.

Then there is DLA. I am not a wheelchair user, I’m not blind or deaf, but I do have a ‘bad back’ (Spondylolytic Spondylolisthesis). Which is, of course, a synonym for ‘benefit cheat’. I also have osteoarthritis (but as someone recently said to me ‘doesn’t everyone over 50?’) and a mood disorder which has been translated over the years by various people as ‘self indulgent’, ‘hysterical’, being ‘highly strung’, ‘making everything about me’ and of course the ever popular ‘refusing to pull myself together and think positively.’

I walk with a stick. I take pain killers. I can’t take anti-inflamatories because of other medications I take since almost dying after routine surgery four years ago. So pain is frequently a problem. Today its been my ankles and my left little finger. To complain of pain in ones little finger sounds so trivial, but believe me its excruciating!

For the same reasons I can’t take antidepressants and the medication I do take can make me feel sleepy and slightly … ‘not with it’.

I began this blog with such enthusiasm. I was going to post two or three times a week, keep up to date with all the political shananigans and report them to the hundreds of readers I would no doubt soon have collected…

Then one morning I woke up and I couldn’t find the energy to post. The effort of ‘pulling myself together’ each day left me exhausted. Anxiety, that horrible feeling in the pit of ones stomach that I hadn’t felt for a while was back with a vengeance. There were so many things to be afraid of…

Migration onto ESA, it’s going to happen to me. Even the thought of the forms and the interview and knowing just knowing that they will decide I’m a fraud. Lazy. Should be working. Had made a life style choice. Squeezes my stomach until I feel sick and makes my heart thud in my throat. What will happen? How will I manage? What about my Housing Benefit? What if I can’t find a job? Well, the miracle would be finding one! In a city with high unemployment 53 year old women with a history of physical and mental health issues is no exactly the top of anyones Most Desired Employee list.

Losing my DLA. I get the lowest rate for care and mobility but it makes such a difference. It helps to pay for taxi’s when pain makes waiting at a bus stop untenable. It buys ready meals for those days when I can’t find the energy or the motivation to cook a meal. Other small things that add up to making life a little bit easier.

I am afraid.

I am tired.

But I’ve blogged my bit for the blogswarm.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Double Karma's #spartacusstories #spartacusreport

2012-01-17T06:30:00.000Z

Well, don't know where to start or what say really, but am gonna give it a go.

I have a curved spine (Scoliosis), which means I get out of breath and tired more quickly than others. Can walk short distances, about half a mile, though I feel sore and ache afterwards. I usually just get a taxi when I need to go out, (like to the shops or the train station etc). Carrying anything heavy ish (like bags of shopping) puts my a strain my shoulders and hurts my back. I live in a first floor flat by myself, so don't have anyone to help me get me shopping up a flight of stairs.

When I am with other people its hard to keep up with them, so they have to keep stopping to let me catch up. When I am with other people I'm walking longer distances and it gets increasingly more and more painful to walk, to the point I'm near crying.

I find it very difficult in speaking to people face to face or on a one to one basis, but strangely I have no problem speaking to people by way of my computer and the internet. I also find it quite difficult in writing something from scratch, I kind of KNOW what I want to say but its hard to get it out into words.

I suppose I have this problem in speaking to people face to face or on a one to one basis, because I look different to others, and people can just be generally nasty and hurtful, its just horrible. How do look different to others? I look different as my upper jaw sticks out. I did have a operation (about 10- 15 years ago) to try and correct this, yet the operation failed so my teeth stick out again. I've been pushed around, called names, been spat on, humiliated throughout my life. Is really difficult to just ignore this kind of thing, the constant feeling of being hated by everyone and so I just don't really go out anywhere.

If I was taken off DLA, I would probably lose my Income support too, which in turn would lose me my housing & council tax benefits and that in turn would see me without a roof over my head and I really don't know WHAT I'd do. I think like other disabled people I think I would want to kill myself. Even though I'm always feeling that I am better off dead (even before the cuts) etc, its not really something I'd want to put my family through.

But what choice would I really have? I would have no money, no where to live.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Stephen's Story #spartacusstories #spartacusreport

2012-01-17T06:00:00.000Z

Obviously the government has undertaken a quick review because they know it will cause a mass out-cry amongst the disabled.

I am profoundly 100% deaf with no residual hearing at all, I lipread and use BSL sign language. I also have additional disabilities, such as varicose ulcers on my leg, which come and go at regular intervals, and I am very concerned about the implications of this change of benefits.

It always seems that deaf people are left out, and we are always just an “after thought”. We all struggle ourselves, and most of us have mental health underlying problems (although for some reason most doctors do not recognise or document this, and just put it down as being deaf!).

I am all for any changes that benefit people who really do have a disability and target those who are cheats.. but from past experience, it seems its always the opposite, they terrorise and destroy the morale and well being of those who really are disabled.

Deaf people are often not treated as “disabled”, and therefore find it very difficult to claim benefits, it seems that few people recognise exactly what it is like to be deaf, and how it affects one’s every day life. I would challenge any person to spend a week without any hearing and come out of it saying that deafness is not a serious disability. Having suffered since the age of seven (now fiftyone) after contracting meningitis, I have struggled through life, with practically no support whatsoever. My Sensory Loss social service manager says that deaf people are not classified as disabled enough to get the new benefits, and we will all be cut out of it. I do hope that this is not going to be the case, and there are people out there who are willing to fight for us deafies, as we don’t seem to have many champions who will speak up for us.

Please do help us deaf people and do not forget us!!

Thank you.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Like a House of Cards #spartacusstories #spartacusreport

2012-01-17T05:30:00.000Z

Like a house of cards

That is how I would describe the effect of losing DLA on me. My higher rate care is the cornerstone of all my benefits, without that I will lose my housing benefit, income support and almost half my income.

I am a disabled student, fighting to get a degree. I wrote about this fight in the Guardian last summer.

"Thank you for this article. I am hoping to graduate in 2012, 10 years after first setting out to get a degree. After being thrown off my third degree course at the end of the last academic year I decided to complain to the university, to highlight the mistreatment I felt I had experienced. It helped me to realise that it wasn't my fault that this had happened.

I have just finished my first year of yet another degree, and this time, at Sheffield Hallam, it's going well. I am studying education and disability studies, which is highly rewarding as it is equipping me to go on to help others who are struggling through the system. It is only by my sheer determination that I am still fighting to get my degree, because of the support and understanding that I have finally received from tutors on my course.

Lucia Coello-Lage

Sheffield Hallam Universiity" ( Link here: http://www.guardian.co.uk/education/2010/jun/01/education-letters-free-schools-disability-support)

As you can see I have already have an uphill struggle just to get my degree. If I lose either my income support or my DLA it means that I lose my housing benefit, and the ability to pay my rent. I am writing this on behalf of all the disabled students out there who are simply struggling to get through the course they are on. For me, the benefits system means I 'only' have to worry about my education. Any changes in the support I get from that benefits system will directly affect my course. I don't want to have to give up my degree because I can't afford it. Unfortunately, if any of these benefits changes come into force then that is exactly what will happen. University will simply become unaffordable. Thats how the proposed changes will affect me.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

The True Cost Of Difference #spartacusstories #spartacusreport

2012-01-17T05:00:00.000Z

He looked pleasant enough, I guess maybe that should have been fair warning. I was motoring in my power wheelchair across a very snowy street, he was shoveling the sidewalk. I’m still a bit unused to having snow and ice under my wheels so I really appreciated what he was doing, to thank him I spoke up. ‘Thanks for doing this,’ I said and before I could say more he responded, ‘Well, I’m certainly not doing it for you.’ He muttered under his breath, ‘fucking parasites’.

Even though it was cold outside, my cheeks flushed with warm. I just kept on going. I didn’t want to stop and explain to him that I am a hard working, tax paying, citizen. Just in affirming that ‘I’m not like that’ I would be affirming his view that ‘people like that’ aren’t worth caring about or doing things for. I knew that he had measured my worth as a person based on the stereotype that people with disabilities are ‘takers’ not ‘contributors’. That any defense of myself would be one of accepting his measurement as one that makes sense. So what I work? What matters is that inherently I have value simply as a fellow human being.

I have always found, as a gay person, that elections were terrifying. I worried that the election of a political party hostile to rights for gay people would act on their prejudices and my rights as a citizen would take a back seat to the rights of bigots to hurt me. I have always worried about the tyranny of the norm or the dictatorship of the majority. While I love the democratic process, I am fully aware that there is a danger that difference will always lose out in an arm wrestle with normalcy.

Germany was doing pretty well with the concept of ‘gay rights’ until the Nazi’s came along. That didn’t work out real well. A lesson from history tells us that rights can be eliminated with a stroke of a pen, with the election of a dogmatist. The cost of being different is living forever in fear – even during times where the majority is feeling tolerant, one waits for the mood to turn. Kid yourself not, there are those working every day to deny rights and access to people with disabilities, to gay people, to people of colour, to women. Respect the energy and focus of your enemies.

But surely people with disabilities don’t have enemies like that, you say? Oh, I assure you we do. Every time a government looks for budget cuts, they always look to services to those with disabilties. Suddenly our lives become luxuries.

A wheelchair to go out? Outrageous! Why do cripples need to go out?

Staffing to maintain community access? Outrageous! We don’t like seeing them out anyways.

Let’s all chant: Congregate: Segregate: Persecute: Destroy!

Some see me in my wheelchair with their eyes but with their minds they see the stereotype of a slothful, lazy, ungrateful, benefit sucking, waste of skin. Government’s agree with that summation when they talk about the ‘cost’ of ‘care’ ... rather than the ‘right to participate'.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

It's almost a year now.. #spartacusstories #spartacusreport

2012-01-17T04:30:00.000Z

It's almost one year now since I was diagnosed with Multiple Sclerosis.
My life has changed forever in the last year, in ways I could not have foreseen and would never have dreamed could happen to me.

I now have to have someone else to change my bed for me because I can no longer do it myself.
I have to get a taxi to the doctors surgery 10 minutes walk away because I can no longer walk there.
Last week I had to leave the shopping centre after 5 minutes because my head was hurting so badly.
I have a rail on the wall so I can shower.
I can't open a can with my left hand anymore.
I have to swallow my dignity and discuss my bowel and bladder functions with a nurse.

If you're thinking this is not a fun way to live you'd be right. It isn't. I am slowly coming to terms with it but I still grieve for the life I no longer have. For the opportunities that I will no longer to able to take.
I wanted to learn the violin, to learn the tango and Irish dancing, to walk the Pennine Way and Offa's Dyke.
None of these things are options for me anymore but I am slowly learning to accept it.

I am learning to adapt. I bought a tumble dryer because I can't walk to the launderette anymore. My family bought me a small dishwasher because I can't wash up by hand. I buy pre cut vegetable and ready grated cheese so I can still eat healthily and not waste precious energy. I buy ready meals for when I am too tired to cook.
I still struggle with getting taxis everywhere because I know that the bus would be so much cheaper but I just can't use it.

These are all things that Disability Living Allowance - DLA- helps to afford. Without it I don't know what I would do. But I am now faced with the prospect of losing it.
The coalition government in it's infinite, non disabled wisdom has decided to do away with DLA and replace it with Personal Independence Payment - PIP. And they are re-drawing the eligibility criteria so less people will be able to claim.

Make no mistake, DLA is not easy to claim. The form is 48 pages long and took me weeks, with the help of a friend, to complete. The only way to deal with having a chronic condition is to try and pretend it's not there. Claiming DLA strips away your dignity and forces you to confront every tiny thing that is wrong with you. It asks the same questions over and over, worded in a slightly different way, to try and trip you up. And it requires medical evidence from a professional. It is the most difficult benefit I have eve had to claim.

And despite MS being incurable and progressive, it was only awarded for 2 years.
So next year I will have to claim all over again. Except if the reforms go through it will be a different benefit. One that is designed to be given to as few people as possible. If I should end up having to use a wheelchair then I would have trouble claiming, despite that meaning my illness is worse. If I should end up being unable to live independently and go to a care home, the Mobility part of DLA would be taken away. I would end up completely reliant on friends and family to go anywhere or else be stuck in staring at the walls all day. Every day.

The government claims that DLA is unsustainable. Do they have any idea how insulting it is to people like me to be told that? Do they realise that just because they decide not to pay everyone those illnesses won't just vanish?
DLA has the lowest fraud rate of all benefits simply because it is so hard to claim.

The government have also admitted they have not done any assessment to determine how these cuts will impact on disabled people. This means they have proposed a series of cuts without any idea of how they will affect the very people they are targeting. This is alarming as well as inherently unjust.

There is a miasma of fear that is very nearly palpable running through the disabled community. We are dependent on these benefits to lead any kind of ordinary life. Not a luxurious, jet set one, just an ordinary one.

The public consultation for DLA ends on Valentines Day. I beg you all to do what you can to prevent the reforms so me and people like me can continue to live a nearly normal life.

Sign the petition against the reforms.
Write a letter to your MP. You can use a template letter so it takes hardly any time at all to do.
Write to Maria Miller the non disabled minister for disabled people.

Help us to spread the word about the campaign. People need to know just how bad it could get. And it will be bad. If you read my previous post you'll see Ali's story of how she will take death if she is refused because she can't face abject poverty and homelessness again. Her story is not the only one. I've seen many posts like that. People are so scared and so desperate that they think suicide is their only way. Many of them feel that secretly the government would prefer that because then it will no longer have to support them. Who can blame them when that is what is implied when told we are 'unsustainable'?

Ask yourself this - what sort of world do you want to live in? One that treats it's disabled and vulnerable as people or one that treats them as a burden?

And remember that most, including me, aren't born disabled. One day it could be you.

Originally posted on Rage Against The Coalition by HellsBells

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Fighting Monsters, A social worker's perspective #spartacusstories #spartacusreport

2012-01-17T04:00:00.001Z

A fantastic initiative has been taken which hit the internet with force yesterday. The idea of ‘One Month Before Heartbreak’ which can be followed on their blog and on ‘The Broken of Britain’ blog – is to collate voices and raise voices and awareness about the government’s nefarious targeting of disability benefits in the month before the end of the consultation about changes to the DLA.

The campaign has also taken off across Twitter – and posts can be found with the #ombh tag.
I’ve written about DLA here. I have written up some responses to the consultation.

The best summaries of the cuts are listed by Community Care here. Too many for me to focus on one by one here in brief.

I have seen the difference that DLA and Attendance Allowance (a similar – but, crucially, lower – benefit for over 65s – cos as the government know, once you hit 65 and aren’t in the work market, your aspirations should decrease and so should the money you receive but that’s another argument for another day) make.

My concerns are two-fold

- Firstly, that the government have, straight off the bat, explained that they want a decrease in take-up of DLA by 20%. For all their guff about reforming benefit, we know that DLA is not the way to target fraud. There is, in fact, little fraud of DLA claimants and it is not an easy benefit to claim. If anything, the cost of re-assessing everyone by an independent company (ATOS) will obviously have a cost. The aim of this government is to cut costs. It isn’t about making things fairer. It isn’t about reducing fraud. It is an ideological decision by this government to target people who they think won’t have the fight in them and to pander to ‘Daily Mail’ politics of the ‘grumble of the self-righteous taxpayer’.

- Secondly, the Labour Party have stated that they support some of the government cuts on DLA and ESA (Employment and Support Allowance) . So let’s not assume that the wider fight is only with the Conservatives and Liberal Democrats in the coalition. This fight must be taken to the Labour Party, who, after all, introduced ATOS into the process of assessment.

As for me, I’d like medical and social care professionals to be trusted to make judgements and assessments of people in their care. I have helped and co-signed many many DLA and AA forms over the years. I would never falsify any of my information and no form that I have assisted in the completion of, over the years, has ever been turned down.

I’ve been phoned by the DWP to ‘check’ I was legitimate and to discuss forms that I had counter-signed. Why isn’t that enough? Why does the government then need to employ a further independent private company to ‘check’ and to become rich in the process.

So I wholeheartedly support the ‘One Month Before Heartbreak’ campaign. I became a social worker to fight social injustice and I can’t do that solely in my office. This is a campaign that needs broad and wide support. So go to the sites, read about the personal experiences of people who rely on these supports and answer the government consultation.

Thanks.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Mark In Sutton #spartacusstories #spartacusreport

2012-01-17T04:00:00.000Z

I am writing this to support “one month before heart break”

Many disabled people are worried just how they are going to manage with the loss of benefits this government are proposing. We have been label as benefit cheats and made to feel that we do not need the support to manage on ourselves without any financial help. My disability is getting hard to manage as I get older and I been told by many people that by working it’s causing my pain and increasing my problems with walking. I receive both higher rate DLA care and mobility but I am expected to have to work full time in order to provide for myself. Every employer I have worked for has refused to employ me full time on health and safety grounds as I really do struggle to walk and by falling over at work as much as I do as it causes risk issues to me and the people I work with. Yet the government feel this is acceptable for me to work full time in order for me to support myself.

There are many disabled people in the UK that will lose their wheelchairs if the government get their way and take away DLA from those in residential homes. This I know from personal experience. I currently am a community support social worker and some of the people I see live in residential homes and I would not be able to take them out into the community if they were to lose the wheelchair, I personally could not push them myself if they had to use a manual chair. It sickens me to feel so scared and worried not only for myself and how I would manage with happen to apply again for a different benefit, which providing the government gives us another benefit. I am also worried just how I going to support those I work for. I have done my best to work in my life and feel that I have been punished for trying so hard.

I grew up in a residential home and worked in a residential college as I could not cope with having to defend for myself without having people around me. But the government decided they wanted to stop funding for this and make disabled people live in isolation in their own homes but shutting down the residential centres. They are forcing those people who have to live in residential care to live in isolation also.

If you feel it’s wrong for the government to do this then please support one month before heart break by sharing this message.

Thank you,

MarkInSutton (audio version available at this link)

Well its day 2 of one month before heart break and I sit here trying to think how I can write this. Why is this a struggle for me I hear you ask. There is a number of reasons for this and some are easy to answer others are not so easy. What concerns me the most is not why I have struggle to get up this morning and have spent the whole day trying to recover from yesterday which to most people was just a normal day at work. What concerns me is people do not feel this campaign is important and us disabled people banging on about cuts that haven’t happen yet are not important. As one person put to me yesterday Mark, what you worried about the government haven't said they going to cut the DLA yet, have they? I felt like just giving up at that point. So we should just sit back and wait until it’s too late before campaigning? Do people not see how important DLA is to me and many disabled people and just want stress and worry this is causing us? Well, let me put you in the picture.

I thought for 3 years to get my DLA and got refused 3 times also. It took me to struggle to get home for Christmas in 2005 to see my family falling over getting off a bus breaking my leg leaving me with metal plates in my leg to support my weight just to get my DLA, I struggled all my life with my cerebral palsy I don’t ask for much I work as much as I can and am allowed by health and safety. I am constantly told that I can’t do stuff and being disabled to lead a normal life whatever normal is. DLA helps me do this as much as I can. Without it I may as well give up. I know one thing without it I wouldn’t be able to work at all. Why is this the case? The Car for one thing. Without my mobility car I couldn’t get to the local shops. I may only live a mile from the local shops and for most people walking this isn’t a problem but for me its next to impossible and would take me most the day just to try. There are many disabled people who do work and try their best to work full time. Many know me I really do struggle at work and bashing people over the head with legal rights is not always the best option. I realise that I have to accept my limitations but don’t take more away from me and other disabled people like me. My DLA means a lot to me and gives me some sort of life where I can go to work and do my part and pay my bills etc.

I don’t ask for much and I am always happy to help those in need I have 3 voluntary jobs also so I can help others. All I asking is for you to support out campaign and not to take DLA from 100s if not 1000s of disabled people who rely on that money just to lead a normal life. I would love to be able to write a massive long blog post at yet I not even managed to been able to cook myself anything to eat today so really do have to save the little energy I have to do that. Just please do pass this blog post on to everyone you know as we need to get this campaign recognised by the media. The threat is real don’t ignore it. People say to me the world would be a worse place without me being here by not supporting this campaign that just may happen as I just don’t know just how I going to manage without the little help I get at the moment.

Also available with audio version here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

A Modest Proposal: Walking a mile in disabling shoes #spartacusstories #spartacusreport

2012-01-17T03:30:00.000Z

The current government are keen to reduce spending on certain allowances

and benefits, the current qualification for which depends upon the

claimant having impairments, disabilities, diseases or conditions of

such seriousness that they are prevented from leading a “normal” life.

They must face considerable challenges in such areas as washing,

dressing, eating, cooking, walking, working or taking part in “everyday

social activities”. If you have a temporary back-ache or a bad

day/week/month at work you would certainly NOT be able to get “free

money” from The State.

If you are unfortunate enough to have a seriously limiting physical and/or

mental condition you are expected to complete a series of extensive,

in-depth forms and provide copious amounts of evidence (from doctors,

specialists, physiotherapists, counsellors, carers and/or those who

provide you with physical assistance) to support your claim. You are

also, in most cases, required to attend a face-to-face “independent

assessment” with an approved assessor who may or may not have any

understanding of the condition which causes you problems. All these

forms, the evidence you’ve provided, the evidence your own medical

practioners have provided and the assessor’s conclusion then go to a

“Decision Maker” who decides whether or not you fit into their

interpretations of the statutory guidelines. Then you’re told whether or

not you can receive payments, at what level and for how long.

If you are turned down and feel you have a strong enough case (and have

the energy to fight another battle), you can then launch into the

appeals process. Most people win their appeals, if they have

professional representation from, for example, the Citizens’ Advice

Bureau.

So, as I said at the top, this government are taking steps to increase the

qualifying criteria for all benefits in respect of long-term sickness or

disability. They are also planning to abolish some allowances (DLA,

ILF) and replace them them with one named (Personal Independence

Payments) and (perhaps) one as yet un-named allowance. I honestly don’t

think that the majority of MPs are anywhere near qualified to tinker

around with these things, so I’ve got a suggestion to make.

For the next year every MP, Minister and Government Advisor should be

fitted with equipment which mimics the effects of a disabling condition.

One day in the next couple of weeks they should all turn up at Westminster

to be issued with their disability at random. The equipment exists. I’ve

seen it used in programmes on television and in films. Splints which

restrict movement in particular limbs to mimic the effect of physical

impairments. Special glasses to replicate various sight impairments.

Ear-plugs or intentionally-badly-adjusted hearing aids for hearing

impairments. Thick gloves would cover loss of sensation or dexterity.

All sorts of clever tricks! Electric shock generators set to random to

give a hint of how some conditions plague suffers with pain. I don’t

think that there’s anything which would safely replicate the “like a

cold ice-pick” or “like a red-hot knitting needle” or “a burning,

tearing sensation” that some musculo-skeletal or nerve-pressure

conditions treat us to. We could just use ice-picks and knitting

needles... perhaps better not! And I’m not sure how you’d replicate

amnesia or lack of reasoning capability. (Pick your own joke here ;-))

The rules of the “game” would also include: no simply paying someone out of

your generous public salary and expenses or your private wealth to

carry things, cook for you, dress you, help you move around, drive,

read, write or any other “normal everyday activity”. They only get to

keep a free travel-pass if they qualify for a Local Authority one

already for reasons of age or existing disability. And no cheating!

If they feel their “disability” limits their mobility so much that they

need a wheelchair, white-stick, walking aid, special software etc., they

should check the criteria for getting a Local Health Authority issue

one or aids or adaptions courtesy of the Local Authority. Then, if they

find they wouldn’t qualify or would have to wait too long for the

assessment, buy (or hire) a suitable equipment out of their salary which

could then be returned, sold or donated at the end of their

participation.

When it all gets a bit too much for them they can ask for exemption, for

which they qualify by: filling in the application forms for ESA, DLA,

Access to Work and also being checking to see whether their “disability”

would qualify them for any support according to the rules of their

local authority. They would be given the forms to fill in there and

then. A random small proportion of them would be given a copy of one of

the free guides published by CAB, DIAL or other relevent advice

organisation but not

the detailed guides that HMSO publish. They are excused from attempting

to claim Independent Living Fund support because that’s been closed to

new claimants since June this year.

The decisions to grant or deny their claims should be made by DWP staff in training or competency testing. I’m sure they do

competency testing... don’t they? If I could make our elected

representatives carry out this experiment while living entirely on

randomly assigned wage levels (including minimum wage or Jobseekers

Allowance) in ratios proportionate to the sources of income of the

general public then I would but that would be really wandering into a dream world!

I wonder how they’d feel about abolishing benefits and allowances or

restricting their availability once they had some experience of

attempting to walk a mile in disabling shoes?

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

#spartacusstories I would not have been able to become a working member of society without DLA #spartacusreport

2012-01-17T03:00:00.000Z

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

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

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

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

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

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

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

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

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

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

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

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

Finally...

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

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

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

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

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Emma's Story #spartacusstories #spartacusreport

2012-01-17T02:30:00.000Z

I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.

I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.

My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.

When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!

When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.

Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.

Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.

My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives

I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.

Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

Emma Crees

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Who Cares? #spartacusstories #spartacusreport

2012-01-17T02:00:00.000Z

Not the government.

The One Month Before Heartbreak campaign was set up to highlight the travesty that will result from the Coalition’s so-called benefit reform. I will admit to not knowing all the specifics, mainly because it is too depressing and anxiety-inducing to examine such bleak material. But one thing I do know is that if and, more likely, when thousands of genuine benefits claimaints are robbed of the few pounds that facilitate their (usually quite basic) existence, there will be poverty, there will be homelessness, there will be unbearable misery – and there will be death.

My friend Ali Quant, who writes the brilliant Purple Noise blog, recently published an eloquent yet tragic and utterly heart-breaking post on what the consequences of losing her only source of income are likely to be. Well, not consequences, for there is only one course of action that Ali feels appropriate: suicide. Her decision is not rash or over-the-top: it simply reflects the fact that she would, understandably, rather not live at all than live the life of homeless degradation and despair that she formerly led.

Forgive a statement that sounds like a teenager whinging, but it’s just so unfair. Ali has oftentimes lived a horrible life, and exists with the side-effects of that every day. She is ill as a result of trauma – not some layabout that sat down one day and calculated how much she could scrounge from the UK taxpayer.

Why Bother?

I happen to know that Ali has a very high IQ and even had I not been privy to that information, it is clear from her writing, from the way she carries herself in (online) conversation and even from her apparently innate abilities to outshine anyone at Scrabble that she is a very smart woman. I also happen to know that she hasworked in the past.

This is something I often point out in relation to my own circumstances. I have an IQ that is frustratingly just short of Mensa-level (and therefore less than Ali’s! ); I spent 19 years in full-time education (the Northern Ireland requirement for same being only 12 years); I worked my fucking arse off in various jobs since the age of 16. Why, why, would I have done any of that if I had wanted to languish on benefits all my life? Why would I have incurred thousands and thousands of pounds of student debt, only to willingly lie about all day and fail to intellectually stimulate myself as I would, at least to some degree, in a job? I am not by nature a lazy person. As I discussed with Paul this week (blog to follow), when other female children were fantasising about weddings and babies, I was fantasising about my dream job. I still am, but I can’t have it right now. Because I, like Ali, am ill. Not malingering, but ill. Debilitated. Incapacitated. Unable.

Consequences

The consequences for me if I lose my benefits are not as horrific as those of Ali, but they will still be profound. Given my level of debt and the fact that I already cannot afford to repay it, I would probably have to declare myself bankrupt. I will still have a roof over my head, thank God, but A or Mum would become solely financially responsible for me. Have you any idea how utterly pathetic and downtrodden that would cause a person to feel? Add to that a hefty dose of pre-existing mental illness and the consequences are horribly far-reaching. A complete psychotic break? A suicide (attempt)? A complete fall from ‘normal’ depression, itself swathed in a despair unknown to an average human being, into the black depths of indescribable, paralysing suffering? Self-harm, that becomes increasingly more severe and dangerous?

And that’s just how it may affect me. What about the others? My mother is a pensioner now, meaning that her income is shockingly low, and although A earns a reasonable salary, it’s not easily enough to cover both of us. And anyway, why should he have to be financially responsible for me? He earns his salary; I don’t do any part of his job for him. Why should I get any of it? My point is simply that it also isn’t fair on either of them for me to lose my income. And I suppose one might say, “but why is it therefore fair on the state to be financially responsible for you?” The answer is that, partly, that I’ve already paid the state quite a bit. Furthermore, it is a long-held principle of this country that we care for our most vulnerable and ill. Or, at least, it was.

Flaws

The DLA consultation papers, and related information, can be found here. I don’t want to read it, but I know from A looking at it that a lot of it is simply bullshit. One thing I heard him muttering about was that they say there is a “perception” that DLA is simply an out-of-work benefit (which is not true, as anyone who meets the criteria can receive the allowance, including those in full-time employment). So what? A “perception” is not a reality. If this is their problem, why don’t go out and address the fucking “perception”, rather than raping genuinely disabled people of what is rightfully theirs?

Secondly, consider the hideous assessment process. I know I’ve ranted about this before on similar posts, but aside from the fact that they are shockingly triggering, overwhelming and vile experiences, they are as ill thought out as fuck. Anyone with a vaguely medical background can assess anyone with any form of ill health or disability. To note our arena specifically, have you ever heard of a psychiatrist actually running the assessment meeting of a person with some form of mental illness? No? Neither have I. Neither have I heard of an orthopaediatricans or rhuematologists assessing someone claiming for arthritis, nor a gastroenterologist evaluating a person with Chron’s disease or a peptic ulcer.

Thirdly, as I argued in this post (with the properly-sourced figures to back it up), the whole Daily Mail-esque trump card (ie. that the majority of sickness/disability claimants are fraudulent) that the government seem to be playing is simply not true. DLA in particular has the lowest rate of fraud of any state benefit in the UK, probably because of the ridiculous amount of hoops you have to jump through just to even be consideredfor it. Benefit crime is certainly a crime, and I welcome prosecution of those people who claim money to which they aren’t entitled, and who give the rest of us a bad name in the process. But the statistics speak for themselves: benefit fraud is not as widespread as many seem to think it is, and much, much more money is ‘stolen’ from the UK’s economy from tax evasion and white collar crime, investigations into which I don’t recall having heard anything about from the Coalition. I’m not making a lefty (Yanks read: liberal) point here; these are simply the facts.

Prison

Last night A and I were lamenting the sad reality that Ali Quant’s recent blog post highlights. As the discussion progressed, A had a somewhat irreverent brainwave: why don’t those of us that are probably going to lose our benefits simply commit a crime? Not a silly crime like shoplifting – you’d get off with a warning for that, especially if you’re a first time ‘offender’. No, we’re talking murder, GBH, rape – that sort of thing. Something to get you put into the slammer.

Of course, because we are not cunts (well, except me – but I still wouldn’t do any of the above), we are not going to do any of those horrible things. So, I postulated, we should simply confess to an unsolved serious crime that we didn’t commit. The cops and the CPS/DPP are unlikely to have the wit to realise the confession is false, and would be glad to get a few more positive results under their belt. Win all round.

Why do you want to go to prison, Pan? Well, obviously, I don’t. But think about it; prisoners have a guaranteed roof over their heads for the duration of their sentence, they get regularly fed, most have TVs in their ‘cells’, they get leisure time with pool tables and video games, they work to earn ‘luxuries’ such as cigarettes, they can gain qualifications, and now they’re getting the vote. All this is funded by the taxpayer.

It is a sad state of affairs, in my view, when those detained at Her Majesty’s pleasure are afforded the same basic rights that the government are preparing to strip from the infirm and the disabled.

Responding

Even if I did find it in myself to read the DLA reform consultation document, I can’t respond to it online as it applies to Great Britain only (the Northern Ireland equivalent is here, and in this case I will be responding via email). However, if you are on the main land and you feel up to reading the document, please do take the time to make your views known. Will they listen? Almost certainly not, but they still need to know that there is a substantial body out there that regards these “reforms” as destructive and life-threatening. I don’t honestly believe they currently know it fully; after all, we don’t (as yet…see below) have a mobilising force taking this issue to the fore in the way that the protesting students did. So tell them. It will be a waste of your time, probably, but tell them anyway. Put it on record.

Who cares?

As established, not the government. Probably not the reactionary media and the majority of those that follow it either.

But these people are not all people.

In light of Ali’s tragic post (above), the wonderful Phil Groom had an idea. An idea borne out of the fact thathe cares about people with disabilities and illness, an idea borne out of the fact he is so full of generosity and love.

The 200 People Campaign

Phil proposed* that he ‘recruit’ 200 individuals that would be willing to give £5 each, resulting in payment of about £12,000 pa. Initially the proposition was to give this all to one person upon the probable loss of benefits, but proving that there’s more than one good person in the world, a lively discussion broke out during which it was agreed any monies raised should actually go to a central fund. If someone had their benefits cut they could, for example, rely on the fund to get them through the appeals process, though that said, the specific qualifications for it have not yet been worked out. One thing this will not be is a second income to those that retain their benefits; it will exist only to help those that the DWP/SSA have erroneously decreed are unworthy of financial help**.

Although this is big ask of people, it is do-able – it’s quite within reach if we get the word out. We can do this. We can do for society’s most vulnerable what this supposedly caring government will not do. And you can too.

Please see Phil’s post on the issue – linked above, and below in the links section too – or, if you are a Facebook user, why not request membership* of the group set up for the campaign? Why not write your own blog post or Facebook/Twitter message to raise awareness? Why not publicly pledge your intention to give £5 to help those that will have their lives devastated by these cuts? Or, if you cannot afford that, why not at least join us in solidarity?

As Karita so perfectly put it, if David Cameron wants a ‘Big Society’, let’s give him one.

Links

Blog Posts on the 200 People and One Month Before Heartbreak Campaigns

Phil Groom: 200 People to Save Ali Quant*
If Narky, Feed Profusely: A True Big Society
Confessions of a Serial Titflasher: Friends, Pole-Dancing Boots and the 200 People to Save Ali Quant Campaign
UselessCPN: One Month Before Heartbreak
Today I Feel Borderline: One Month Before Heartbreak Post
Benefit Scrounging Scum: Another Little Piece of my Heart

Other Blogs and Sites Against Benefit Cuts

—

Please contact me or leave a comment below with any more links that you think are relevant to this post and I will add them as soon as possible.

* Please note that you may encounter a request for a password to Phil’s post. There are a number of reasons for this that are discussed in the post itself and in its comments. Please contact Phil for access. The Facebook group is presently a ‘closed’ one for the same reasons.

** It is also been agreed that the proposed fund will, for the meantime, be restricted to those with mental health difficulties. This is because mental illness is so un-obvious and stigmatised, and also because, regrettable as it is, we are simply unlikely to have the resources to help everyone that this government is screwing with.

also available online here

The Cage, A Metaphor #spartacusstories #spartacusreport

2012-01-17T01:30:00.000Z

Imagine living with 3 parts of a cage around you. The 4^th wall of the cage is being held open by DLA money.

Thinking about the proposed cuts and restrictions the government are discussing this is the image I came up with, lying in bed late at night as you do.

How does DLA hold that cage door open?

Well it provides a CONTRIBUTION to the costs that disability incurs. Whether this is heating, electricity, mobility aids, vehicle adaptations, extra petrol, an (adhoc) assistant.

These allow the person with a disability to interact with the(ir) world and the world to interact with them.

Cut the DLA or change the way it is paid and the risk is to imprison us or to risk that cage door being a marionette puppet, hovering precariously. Living with uncertainty is something we all have to do, but that degree of uncertainty (eg the postcode lottery that exists for direct payments/wheelchair vouchers) can only be detrimental to mental health, the person’s extended family and for those considering the purse strings, THE ECONOMY.

My Whinge For Welfare #spartacustories #spartacusreport

2012-01-17T01:00:00.000Z

This post is part of One Month Before Heartbreak, a campaign against the withdrawal of DLA, the major disability benefit, in the UK

When I got my diagnosis of Bipolar II last year and struck it lucky with medication that works (on the first try!) I thought, “At last!, after 20 years I can be something else but sick” and started looking for ways of earning a living. OK, that surprises even me. My family was agnostic so I never exactly picked up the Protestant work ethic. But it’s amazing how decades of being a social outsider and feeling like a useless waste of society’s welfare benefits money will affect you.

Still, although the medication works, the psychiatrist warned me that I would also need to put in effort to keep my moods stable. She recommended Overcoming Mood Swings and I’ve found it very useful. It’s also a lot of work. Of course it’s worth it… but it does rather cut into the time I can devote to getting back to work.

And then there’s the other illnesses. I had a plan to use my writing skills to get back into work. Of course after all these years they were very rusty but I found a great eBook by Ali Hale, The Staff Blogging Course, which seemed like just what I needed to guide me into freelance online journalism. My health was good the day I found the course, so that day I very nearly completed the first chapter, and it was everything I hoped. And yet, in the six weeks since I bought Ali Hale’s effective course that’s the only time I’ve been capable of utilising its simple directions. Besides Bipolar I’ve also been diagnosed with post-viral fatigue syndrome and fibromyalgia and I’ve spent about 4 weeks exhausted and in pain, primarily with dental, jaw and neck problems. These eased enough so that I could spend Christmas caring for my husband who has COPD and came down with the Swine flu for the second holiday season in a row. Poor sod.

Then I had the fun of a week of flu myself – but luckily a milder version than my husband’s, since I was desperate to recover enough for the 3 week round of medical appointment’s that are taking up my January. I need to go for a scan to discover the cause of the enlarged lymph nodes of the past 6 months or so, the dentist for yet more dental treatment to try and save teeth that are almost beyond repair after 20 years neglect due to my untreated Bipolar of 20 years. I have an x-ray ordered by my GP to check the nodes aren’t cancer or some such true nasty. And a recent trip to the opthalmist informed me that I have a rare genetic disease, Retinitis Pigmentosa, causing deteriorating vision and of course that diagnosis – joy of joys – means I need a whole new round of tests to ascertain the extent of my visual loss.

I’m a tad pissed off that I might be losing my sight. It really would interfere with this whole writing as a way of getting back to work gig. So if this reads like one big whinge… maybe you’re right. I prefer to think of it as an opportunity for me to get some new skills in working out how my hosted web site works and getting over my unreasonable fear of WordPress. I’m just glad to have had a morning where my brain and body worked well enough to write something and learn something. Small steps. But I want at least a shot at my future independence.

Disclosure: this post is indirectly funded by DLA. Three years ago when we got married I lost all my welfare benefits and my husband had to keep us both on a less than average income (whilst paying off a debt of his own). We struggled to eat and to pay the bills. I certainly couldn’t have invested in retraining for work via ebooks and blogging. Actually I was too sick to consider even part-time work and there was no money for transport or an advocate to seek medical attention to get me well. With the strain and his own chronic illness my husband also got sick and was off work for 5 months. Which gave us time to work our way through the red tape and – after 3 years of marriage and no benefits for me – to get me DLA. It saved out lives. Allowed us to get me the medical care I so desperately needed. But it hasn’t made our lives easy. The DLA simply funds the extra expenses of my seemingly endless illnesses/disabilities. And lets me dream of working. If my blog’s gone next year it wont be loss of interest – like so many new blogs – it’ll be because of the loss of DLA and me and my husband being back to struggling to survive below the poverty line line like so many other disabled people.

What’s this got to do with you? No-one wants to talk about old age, sickness or death. But it comes to us all. And to our loved ones. Disabled peopled are too sick to fight against the loss of our benefits. We rely on the kindness of others but we also need financial support to allow for some independence. When the unthinkable happens to you or a loved one do you want to find yourself treated like a benefit scrounger and dependent on family, friends and neighbours for all your transport and care needs? If not, then speak up for disability benefits now. You’ll be helping yourself later.

Originally available here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

A Personal Note #spartacusstories #spartacusreport

2012-01-17T00:30:00.000Z

I am not personally affected by the proposed and likely to take place changes that the current Government are looking to adopt. The point of this post and like many others is to express absolute disbelief that we live in a Society where we are prepared to give thousands to other Countries in the world despite being in a recession and yet not provide safety and financial security for those entitled to claim it and those who need it. It truly begs belief. Please understand, I am not against helping other nations, it is quite right that we as a nation help others in a worse situation than ours, but not at the cost of ourselves.

My interest in this is that in 1952 my mother contracted Polio. From the age of 5 until she was 17 she attended hospital for various tests and check ups to establish how her muscles were affected by this disease. When my mother left school she established her working life and eventually had me and raised me.

When she was about in her early 50s Mum was plagued by periods of exhaustion and pain to name a few. Her GP signed her off work and after much form filling Mum eventually saw a Doctor who confirmed that Mum was entitled to claim incapacity benefit. After a period of time this was reviewed and Mum was advised that she was fit to work, although clearly she was not. I launched an appeal to the panel, which consisted of a lay person, a representative from the Benefit Agency and a Doctor. The Doctor at the panel agreed with my argument and stated that Post Polio Syndrome which my Mum has will get worse and not better and the Incapacity Benefit was reinstated.

Mum turned 60 and was advised that she should now claim Disability Living Allowance due to her increasing mobility issues. The Post Polio Syndrome is of course, as predicted getting worse. The form which no doubt many of you have seen is nearly 50 pages long and comprises of a set of questions, many repeated so that you might make yourself illegible for the benefit. Having completed the form two or three times and each time being refused. I consulted a local "volunteer expert" who assisted Mum and I with the form. The deadline was before Christmas and the form has been acknowledged and finally a report from the "medical expert" has been requested. By medical expert they have asked the physiotherapist for their views. No request has been made to the GP or to an expert in the field of Post Polio Syndrome. I did include some details about Post Polio along with the form.

My concern is this. The decision to allow or disallow is made on the basis that an expert has been asked. It of course does need to be the right expert in order for the decision made to be a robust and the right one. At the end of the day everyone seeking to claim or retain their allowance is an individual, each with an individual set of issues and concerns. Is it right that someone at 63, who was looking forward to retirement has a poor quality of life? Is any of the conditions that are being experienced right? Of course they are not, and as a society we have the power to give a little bit of help in order that it makes the life of that individual easier. We should not be making lives harder, so that exhaustion of living day to day is placed on top of the exhaustion felt by the conditions itself.

I have read somewhere that the Government believes that the amounts paid out in DLA is unsustainable. This benefit is in fact one of the hardest to claim. Given that it is so hard to actually be awarded the benefit, does the Government really believe that by removing the benefit will miraculously cure all those who currently claim and those who should be claiming but are not strong enough to plough through the red tape? If they do then the Government is not only deluded but seriously mistaken.

In 1942 the British Government asked Sir William Beveridge to write a report on the best ways to help people on low incomes. In December of the same year the Beveridge report was published and proposed that all people of working age should pay a weekly contribution. In return, benefits would be paid to people who were sick, unemployed, retired or widowed. Beveridge argued that this system would provide a minimum standard of living "below which no one should be allowed to fall". When the Labour Party were elected in 1945 this policy was adopted. Somewhere since 1942 we have gone wrong. The current proposal confirms just that.

I don't know what the answer is. What I do know, is that we need to find away to protect those who for whatever reason are not able to fight this battle alone.

Disclaimer. The post above is written based upon known family history and my personal opinion. It is not written as a political post. I am happy for this post to be freely shared, however, please acknowledged me as the author.

Originally posted here

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

From An Anonymous Advisor #spartacusstories #spartacusreport

2012-01-17T00:00:00.000Z

I work for an agency which among other things provides advice to those who need it. A huge part of that is to do with welfare. We help with whatever we can. But a huge part of what we do is welfare related. Checking to make sure people are claiming all the benefits they can. Advising how to claim. Physically filling out forms for those who can’t. Explaining how the system works. Supporting people to appeal if necessary. Homelessness applications when they lose their homes. Debt management when ends just don’t meet.

I doubt a week goes by where we don’t spend several hours on a DLA form. Or let someone without their own phone use ours to apply for a crisis loan as they’ve literally nowhere else to turn. Crisis loan phone calls can take up to an hour. Most of that time can be waiting for the call to be answered whilst an automated message repeatedly suggests “why not call later we’re open until…” A good suggestion if not for the fact this is a form of support for people in crisis – not something that can be planned or put off.

The majority of the other workers in our organisation do so voluntarily. They are the mum with a few hours to spare whilst her children are at school. The retiree who still wants to feel useful. The disabled people who aren’t able to work but who have the ability to do a few hours once a week. It takes a lot of a commitment to do what we do. Huge. Every single one of us, volunteer or paid staff has undergone months of training. Training that continues even once you qualify.

I’m not being melodramatic but what we do can be difficult. You have to learn not to take on other peoples problems. It’s not always possible and there is the occasional day where you go home worrying about someone you’ve seen or wishing you could have done more. Sometimes we see people in desperate situations and no matter how much we want to, we can’t do anything. I’ve heard many new recruits express their shock at how hard this can be. Several I know had to give up because it was too stressful for them. As volunteers and staff trying to provde support we have the luxury of deciding not to do that any more. For our clients, there is no choice.

The single mother fighting to make the system understand she can’t give her address on a benefits claim because she fled domestic abuse and is living in a shelter (the conditions of which give a PO Box address only for correspondence to ensure safety). The very ill person who comes in on the coldest day of the year whose benefit claim had been delayed for months; they couldn’t heat their house and barely ate. The parents told their disabled child didn’t qualify for a blue badge. The person whose child answered the door to people from the DWP wanting to interview their mum for benefit fraud (when actually the mistake made was the DWP’s fault and not fraud).

Those are just the ones we see, others can’t get to us. Or we have to turn away as we’ve not got the resources to deal with the number of callers we have.

This is pre cuts. We’ll continue once the cuts come in, just as we always have. But our job will be much harder. I know the coalition want a “Big Society” but that’s what we’ve already And that’s why although I am not disabled I support One Month Before Heartbreak and all those campaigning.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Today I feel #spartacusstories #spartacusreport

2012-01-16T23:30:00.000Z

I have a postcard on my fridge door. I have had it for years and it came as a birthday card a long time ago. Somehow while I was making tea in the early hours, it got me thinking about this post, and this DLA disaster about to happen, the big society idea etc. I like the sound of the big society in some ways, the idea of communities coming together, working together, increasing tolerance and understanding. But, providing services that otherwise will be lost due to cuts, relying on volunteers to excess, no. I don't understand how the party who dreamt this Big Society up can genuinely look people in the eye and say that they were also the party whose leader in the past said "there is no such thing as society".

The postcard: A long dining table with benches on 3 sides, each with many small white rabbits sitting on them. A larger (adult?) rabbit is standing at the 4th side of the table, holding a very large carrot in one paw, and is about to cut up the carrot with a knife, presumably to feed the many other smaller rabbits.

This may sound strange, please forgive me. But I got to thinking, always dangerous. The bigger / adult rabbit who is standing up -or the one that seems to be in charge (she looks kind and friendly so not sure I can make the leap to a comparison with the ConDems but anyway...) seems to be providing for the other, smaller rabbits, who are waiting to be fed, they don't have any food of their own. They are looking expectantly, but none of them is grabbing for the food or fighting for it.

I am not too well at the moment but I am not a small white rabbit, that I do know. And I can go and get food. I can cut it up. In that respect I am absolutely fine. However, I am not able to work at the moment, supported by several mh professionals. I live on ESA and DLA. This isn't what I want or what I planned to happen for me. I have lost four jobs (so far) due to my mental ill health. I want to work and get to a place where I can do that sustainably without lurching between crises. I want to be independent. I want to be able to provide carrots for those who cannot provide them for themselves and one day I hope this is achievable. But I do need time to be able to get there, and without DLA I doubt that I could keep my tiny HA flat or get to appointments, activities that aim to support me.

What if one of those rabbits (or one in four) is accidentally missed out, or missed out on purpose and doesn't get his/her slice of carrot to sustain him/her until the next meal? What if s/he lacks confidence to ask for help, what if s/he is too ashamed to ask because others might say s/he doesn't deserve the carrot? What if what if what if. I am trying to make a point, and failing, but on I go...

DLA is the carrot. It is necessary to provide for those who can't provide for themselves, whether this is long or short term. I fear that for those with mental health issues, issues that we can't see and which many do not want to see or acknowledge, DLA will become "unnecessary" as of course many of us are mobile or not deemed to be in greatest need.

I have gone on long enough. The idea made sense, I doubt the post does, but, there, I tried.

Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

Paul's Story

2012-01-16T23:24:00.002Z

So nice to hear from Sue and I watched her on Newsnight being ignored as she spoke. Sue im so proud of you the person and for all you do.

I posted here a short while ago about how I dreammed of meeting someone with similer condition’s to not be alone for the rest of my life. but with the new P.I.P. And other draconian rules and shameful way one partner has to feed the other just as you tried so valiently to point out Sue. your partner paying out of his pocket and not you having independant finances to meet your need’s. Now Marilyn has spoken out so bravely Hello Marilyn. You mention side effect’s from various treatment’s. I dare not imagine. I do know the painkillers im on have shocking side affect’s on me. but try telling all this to a tick box computer being used by a Government Robot. So Im like you and countless others very real anxiety and fears for the near future. regardless if im eligible for the new shameful P.I.P. AND ORE UNEVERSAL CREDIT.

I have no doubt even with these new benefit’s if awarded to me would not be anywhere enough for me to sustain my life as it is meaning I will have to take my own life im trying to prepare for the inevitable. I will starve and freeze to death slowly but surely. I wont be able to manage my condition’s whatever. thing’s will go back to the darkest of years when I did not get these benefit’s indeed just the lower rate of D.L.A. Where I had to pay for prescription’s. in 2003 for example I ran out of my Anti Depessant but could not afford to pay the prescription for a few day’s. but my withdraw’s was within 24 hour’s. I beggen N.H.S. For one tablet. 9What do you expect me to do send it down the telephone line ?). I begged the crisis team three times to lock me up by the next day. as I lay on the floor screamming in agony. The third time I was told the worker had went to the shop. So I called the Emergency Doctor out. after waiting a while I had enough. I called the police said if you dont get here within 7 minutes I will kill myself. they were there in 5 . The Hospital kicked me out as usual after one night after I got home the emergency doctor came 36 hours after I called for one. and gave me a repeat prescription that I could not afford to pay for. I still have it as proof.

The med’s were the wrong type of care anyway I kind of liked to float over the a platform and want to jump other times due to my trauma it was the Bridge. Just how much have I cost the tax payer indirectly due to lack of proper care and finances to help manage them as best I can while not disturbing our causing harm to others ???

Without One higher rate of D.L.A. Later awarded I just could not possibly be alive now. in short D.L.A. Is a life saver for me in emotional distress along with a hidden physical disability that is very expensive to help manage. it also includes very frequent and expensive Taxi Fares.

As a Media volunteer a few years back I spoke to a reporter I was asked how much I get on telling them I was told. (Oh that’s far to much for a single person). and Taxi fares are a luxuary). I wonder did they think I had an imaginary wife working all day to feed us both ?

I only get the lower rate mobility which only pays for one return taxi trip. so I use all benefit’s combined to my best ability to pay for thing’s as and when needed. and my dreaded massive gas and electric bill’s. I cant even pay for our get help to access support to cook food for me and other personal thing’s. im wasting away very quickly on very strong med’s that hopefully will finish me of before this warped Government R.I.P. D.L.A. And all who ”DIE”With it. Please all let’s be a P.I.P. Of a different final solution. PAIN IN PARLIAMENT.

Marilyn's Story

2012-01-16T23:23:00.000Z

I have incurable, terminal cancer, and struggle with fatigue, mobility problems and especially side effects from my various treatments. I’ve been on constant chemo (and other debilitating drugs) for some time – this and living with a terminal illness takes its toll. DLA pays for a car and some home care, so it helps me to have a better quality of life – important when you won’t have much quantity of life.

If the Government cuts DLA and establishes PIP, I don’t know if I’ll be eligible for the new benefit – with all the uncertainty in my life, this just adds to my anxieties and fears.

I had to retire early, and have not been able to be politically active for some years – the #sparticusreport campaign has helped me find my voice again. Together we shout!

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A Spartaci Tale

Denise's Story #spartacusstories #spartacusreport

Anne Novis MBE #spartacusstories #spartacusreport

Becky's Story #spartacusstories #spartacusreport

Coffee's Story #spartacusstories #spartacusreport

By Casdok on behalf of C #spartacusstories #spartacusreport

Fit For Work? #spartacusstories #spartacusreport

Sarahs story #spartacusreport #spartacusstories

Why We Can't Grin and Bear It Any Longer #spartacusstories #spartacusreport

E's Contribution #spartacusstories #spartacusreport

Are You Sure It Won't Be You Next? #spartacusstories #spartacusreport

Aunty Awdurdod's Story #spartacusstories #spartacusreport

Diana's Story #spartacusstories #spartacusreport

My dad, working through the pain #spartacusstories #spartacusreport

Denise's Story #spartacusstories #spartacusreport

Lady Grey-Thompsons DLA story #spartacusreport #spartacusstories

Something needs to change - just not like this #spartacusstories #spartacusreport

The World Is Watching #spartacusstories #spartacusreport

Will The Government Allow Me To Live? #spartacusstories #spartacusreport

Disability cuts don't affect me #spartacusstories #spartacusreport

Jim's Experience #spartacusstories #spartacusreport

Objectively Disordered #spartacusstories #spartacusreport

Just A Ride's Take #spartacusstories #spartacusreport

Not The Life I Planned #spartacusstories #spartacusreport

Double Karma's #spartacusstories #spartacusreport

Stephen's Story #spartacusstories #spartacusreport

Like a House of Cards #spartacusstories #spartacusreport

The True Cost Of Difference #spartacusstories #spartacusreport

It's almost a year now.. #spartacusstories #spartacusreport

Fighting Monsters, A social worker's perspective #spartacusstories #spartacusreport

Mark In Sutton #spartacusstories #spartacusreport

A Modest Proposal: Walking a mile in disabling shoes #spartacusstories #spartacusreport

#spartacusstories I would not have been able to become a working member of society without DLA #spartacusreport

Emma's Story #spartacusstories #spartacusreport

Who Cares? #spartacusstories #spartacusreport

Why Bother?

Consequences

Flaws

Prison

Responding

Who cares?

The 200 People Campaign

Links

Blog Posts on the 200 People and One Month Before Heartbreak Campaigns

Other Blogs and Sites Against Benefit Cuts

In the News

DLA Reform Consultation Documentation

My Previous Posts on Benefit Cuts

The Cage, A Metaphor #spartacusstories #spartacusreport

My Whinge For Welfare #spartacustories #spartacusreport

A Personal Note #spartacusstories #spartacusreport

From An Anonymous Advisor #spartacusstories #spartacusreport

Today I feel #spartacusstories #spartacusreport

Paul's Story

Marilyn's Story