Living a Half Life

To our government we disabled people, together with people living with long-term ill health, have become a revolting group who have the temerity to be unable to work, and as such threaten the fiscal probity and social fabric of this the world’s fifth richest economy. We are each a 21st century Spartacus camped together on hills far away from decent folk and engaged in our own ‘Servile War’ pitted against the might of the DWP – an army of oppression if ever there was one – headed by interchangeable Pompeys, firstly Iain Duncan Smith now Damian Green with his loyal lieutenants Penny Mordaunt and Lord Freud and around 87,000 foot soldiers. Imagine how fearful our government is that a whole army of disabled people managed to rob the Treasury of £36.7bn  in the last financial year, (source: Full Fact), out of a total government budget of £772bn. And what do we do with our booty? Idly plan insurrection and give nothing back to society, lazing on couches as state-paid servants peel our grapes and do our bidding whilst we luxuriate in our hedonism. We have to be stopped, and so we are with dreadful consequences. Death, severe worsening of  disabling conditions, mental health issues and stress are all increasingly being reported and the situation for disabled people is bleak. I had believed that government, despite all its faults and whatever party was in charge, had at its core a belief that people mattered and that as a welfare state those in need would be supported. I don’t believe that any more. I hope to garner the strength to fight for others and bring to light the cruelty this Tory government’s ideological need to cut and smash the mesh that has held this country together and served it well since 1945. An underclass is being willfully created who this government treats as electorally unimportant, fiscally negative and socially unacceptable due to disability or ill health. The Welfare State and those dependent upon it is being marginalised in the name of austerity, and we are being pushed back to a pre-welfare, pre-NHS state.

Recently the film I, Daniel Blake attracted a huge amount of publicity for its stark portrayal of the nightmare that is the UK benefits system today, and how people are treated not as individuals but targets who must behave in a set way or face sanctions. There are a few people who choose to think that the film doesn’t reflect reality, that it has allowed dramatic license and the political viewpoint of its makers to cloud the issues and things really aren’t that bad. They are. They really are. People who follow me on Twitter have seen my rapid descent into despair over the past six weeks, and in the months prior to that my fight with depression. This is the reason I’ve not blogged very much this year but now feel that I have to stand up and be counted  and say I too am Daniel Blake and am suffering at the hands of the DWP. I have detailed my disability and how I became disabled in previous blogs, I am in chronic pain – extreme pain that never goes away and hugely impacts on all aspects of my life. I’ve suffered with this condition for almost thirty years and have had knee replacement surgery due to severe arthritis, I have attended pain clinics and require high doses of strong pain medication. The major disabling problem is arthritis in my spine for which I have had facet join injections which did not help, and the only option left is a risky and serious procedure called a spinal fusion which only has a slight chance of improving my condition – the likelihood is that it would have little effect or could make matters worse. What follows are my experiences as a result of the DWP Work Capability Assessment, all of which can be verified. It is written whilst I am in the middle of an extreme bout of depression, it may ramble and it may appear disjointed but stick with it please – this is one of many very similar and typical cases. It is important that cases like mine are known about and the true extent of the horrendous situations people are being put in are exposed. I am in many ways very fortunate that I have incredibly good friends who have put me in touch with a good welfare rights worker and who are kindly giving me money to buy food whilst I wait to receive benefit – if I receive it. Goodness knows what will become of me should I not have my ESA reinstated.

In mid-March I received my  Capability for Work questionnaire which I duly filled in and sent back on 30th March, and as a result of which I was given an appointment for the Work Capability Assessment. The appointment given me was at a time and in a location that I would not have been able to make – 9am in Romford in a building nowhere near public transport. It also turned out that the assessments were carried out on the 2nd floor of the building which I was told by the person rearranging the appointment wasn’t suitable for me anyway as I have difficulty with stairs. As I take at least 3 to 4 hours to get myself in a fit enough state to walk, etc., so I can then get ready for the day after sleeping for 3 hours or so, appointments at 9am in distant locations not near public transport would mean getting up at around 3am. I live in Bethnal Green, the person I was speaking to was in a call centre in Wales. She doesn’t know London. Alternative accessible buildings offered to me were in Canterbury, Colchester, Croydon, Balham and Paddington. I agreed an afternoon appointment in Paddington for 2nd June. The date duly arrived and I took a friend of almost 30 years with me to the Job Centre – a soulless place with security staff wandering the floor, overworked staff who seem cowed by the job and a whole collection of humanity crushed into a shabby, uncomfortable small reception area all nervously awaiting their assessment. My name was called and I was told to take the stairs to the first floor – stairs? I was told it was an accessible building but then 1st floor is, to a non-thinking non-disabled person, closer the the ground so therefore more accessible. Not. My friend and I had to be escorted by a security guard into the lift and up to the first floor where we were greeted by a pleasant young ‘medical professional’ who it turned out was a doctor. She listened attentively to the cause of my disability, asked questions and seemed incredibly kind and supportive. When it came to the physical examination I was in considerable pain which the ‘Medical Professional’ could see and she said she didn’t want to examine me as it would only cause me more pain. That was it, over. I felt a little buoyed up as a result of the examination and felt it just might be OK. I didn’t hear anything for quite some time, then in August I received a letter asking me to attend a Work Capability Assessment. I called and explained I’d already had an assessment and was awaiting the result. I was asked if I was sure as there was no record, and I again said I had been assessed. It turned out,after a call back later, that the report had been attached to another file and hadn’t been looked at.

Finally, at the beginning of October I was told by phone that I had failed the WCA and that as a result my Employment and Support Allowance had been stopped immediately and a letter confirming the decision and the report would be sent to me, then I was given numbers to ring to claim for Job Seekers Allowance. Depression had been taking hold in any case and the sudden and brutal way the decision was relayed was like being punched. That day I simply shut down, I could not cope with anyone or anything else and although I’m involved with community projects and play an active role in my neighbourhood I was unable to engage with anything. My world immediately shrank, I spoke to few people and rarely left home other than to get food or attend Job Centre and medical appointments. My first Job Centre appointment was two days later where I had to claim for Job Seekers Allowance. I had to sign an agreement to look for employment within a 90 minute commute and work for up to 40 hours per week. I was stunned and explained I didn’t think, in all honesty, that I would be able to due to my disability. I was informed that my assessment showed I could – I hadn’t yet seen the assessment as it hadn’t arrived – therefore if I wanted to receive any money I had to sign otherwise I would get nothing. I signed a legal agreement knowing I had lied. I felt despicable. No account was taken of my requirements due to my disability even though it was noted I was still in receipt of Disability Living Allowance. I was given pamphlets with numbers on that I had to contact for ‘back to work courses’, and a sheet of A4 with details of how I could make and then use a ‘Jobseekers Account’ which I would have to log into each day and look for work, providing evidence of the jobs applied for. Failure to do this could lead to sanctions. I was confused, I’d be spoken at but not had any assistance or guidance. The following week I went back to the Job Centre not having looked for work, believing that as I was so long out of work due to my disability I was required to do the training courses first. I was told this was not the case, that I still had to look for and apply for work and would be required to do so even when training. Being stressed and spiralling into deep depression meant I was suffering increased extremes of pain and failing to look after myself properly. Even people who knew me only slightly could see I was ill, yet this made no difference to the DWP as I was simply another nobody that was required to make their targets.

The Work Capability letter and report arrived at the end of the week and was a startling and worrying misreporting of events. Absolutely no mention of my pain levels and how they affected me were noted, and it was stated that I had ‘declined the physical examination’. The report, it seems, wasn’t made by the ‘Medical Professional’ but by a ‘Decision Maker’ who wasn’t present at the assessment and who has never met me. I wrote for a mandatory reconsideration of the decision to be made which was received by the DWP on 19th October but to which there has been no response as yet. It could take at least another six weeks. If it is decided that the original decision is correct I will then have to go through the appeals procedure. It is a  Kafkaesque bureaucratic nightmare and a truly worrying thing.

Finally I had an appointment for a training course in a centre, (in reality a converted shop with limited accessibility), that was two bus trips and an hour away. The appointment was to fill in a questionnaire on 2 sides of A4 – name and address, etc. It took just 15 minutes and another appointment was made for my ‘assessment’ the following Monday. I made the same journey, over an hour on two buses, to be sat at a computer answering very basic multiple choice questions. It took 45 minutes and I was told I’d answered too quickly. Another appointment was made for the following day when I would receive the results of the ‘assessment’ and meet with a tutor to be told what course would be best for me. On Tuesday I took the journey back, and as I was about to enter the building was phoned to say my appointment was cancelled as the tutor had to leave for a family emergency. I was in pain, I was anxious, I was tired. I broke down. The staff within the centre hadn’t a clue how to help, all they could do was make another appointment for later that week. I leant against a wall on a busy road in Islington and sobbed. I couldn’t make the rescheduled appointment, I was too anxious and had not slept the previous night. I was physically sick, weepy and couldn’t face yet another soul-destroying, demeaning waste of time. Even though this meant that I could quite possibly be sanctioned for failing to do all of my required tasks when I saw the Job Centre ‘work coach’ the following week I really couldn’t think about it. All I knew was I couldn’t cope. This isn’t me. Via Twitter a couple of people – via trusted sources – said that if a doctor’s note was provided you could be exempted from the work requirements but still receive JSA. I saw my GP and explained the situation, he said that under no circumstances could I be expected to do what was being asked of me, and signed me as sick. The ridiculousness of having to be signed as sick for my disability really got to me – for years I and other disabled people have fought for disability not to be seen as illness. So, armed with the doctor’s note I attended the Job Centre and told the ‘work coach’ all that had happened and gave him the note. He took it, read it and said it was vague. It was factual and stated I had severe chronic pain that rendered me unable to carry out any work activity for 13 weeks. Off he went to his supervisor and returned to say that I would be ‘met half way’ and would only need to attend the Job Centre every 2 weeks and do the rest of my work searches and take part in online courses. I said that I had provided a valid doctor’s note that would be accepted by an employer and I was unable to do that. I was told that I was therefore ineligible for JSA and my claim would be cancelled with immediate effect. I was given a number to call for ESA – the benefit I had lost and was trying to get reinstated. Once again I was left sobbing and scared. A friend arranged for me to speak with someone from CPAG who calmly went through everything that had happened and agreed to take on my case.

So, that is the current situation. As things stand I am not receiving any ESA or JSA nor am I entitled to. Thankfully I still receive Disability Living Allowance although this just about covers my utility costs and I have a comparatively large overdraft due to trying to cope on benefits that haven’t been increased since 2010 whilst fuel, food and rent have increased markedly. For food I am relying on the kindness of friends who have been lending me money which I fully intend to repay. If the DWP agree to reconsider I will get my ESA reinstated from the start of October. If they don’t and I have to appeal I will receive a reduced amount of ESA during the appeals process, also backdated. Until then I am entitled to nothing and there is no idea of how long this limbo may go on for. My mental state is fragile, my physical state is worsening. I barely see other people outside of a small group of three or four I trust implicitly and don’t feel the need to ‘put on a brave face’ for, and when I have seen other people it physically and emotionally exhausts me. I hate being like this, it isn’t me. I feel I am half a person living a half a life.

I’m sorry that I needed to write this but thank you for reading it – I hope it spurs you in to action as there really are many thousands in very similar situations, possibly many in much worse situations as they don’t have the type of support I’m lucky enough to have. Contact your MP and raise this issue, speak to local councillors and ask that local authorities put in place practical and if possible financial assistance. Some do already but don’t make it known. Support your local food bank – there are drop-off points for donations of cans, long-life cartons of milk, juices, etc., and dried goods such as pasta, rice, etc. Find out more at Trussell Trust. Support your local Citizens Advice and local advice services, and groups like CPAG and Shelter.


12 thoughts on “Living a Half Life

  1. Pingback: Living a Half Life | Christopher John Ball

  2. Pingback: Living a Half Life | Benefit tales

  3. Inform them you want your next WCA recording, if you ask, they have to do it.When you attend the assessment NEVER just answer yes,or no, to any question, expand your answers. I was asked if I had a garden, I said I had, no further questions were asked on the subject. In the subsequent report it stated that I did gardening! They also said I was on a mild painkiller, I’m actually on Tramadol. I attended with a friend, as I suffer from agoraphobia, the report stated I could go anywhere on my own. They are liars! I “failed” my first WCA, but the decision was overturned after I complained to the DWP, and directly to Atos. My second assessment, in 2010, I had recorded, I received ESA and have heard nothing from them for over 6 years. Even though I am in the WRAG, I have not been asked to attend any work focused interviews, or go on any courses. This proves that the WRAG is NOT just for people who may return to work shortly, as I’ve been in it for 7 years!

    Good luck!


  4. This piece of writing from a distressed heart was extremely moving and deeply honest.
    It is every disabled and/or sick persons night terror.
    I often find myself in a distressed and anxious state.
    My conditions have deteriorated over the last 6yrs.
    To know ur own government wants u dead is like being told we have no right to breath.
    I never ever thought for one moment that this would happen in Britain and I felt safe.
    I only thought this happened when Hitler was ruling over Germany.
    I find my thoughts r constantly of how i will end my own life, if/when DWP say no to my continuation of recieving social security support.
    Everything feels so overwhelmingly difficult and completely exhausting that I feel sick to the core of my being.
    Every moment is filled with a sense of foreboding and constant dread and one I can feel eating my very soul.


  5. This could be me- I am so,so lucky to have a brilliant partner who has stood by me through everything. I went from DLA to PIP in spite of having a lifetime award. My assessor was lovely, how could he possibly be working for ATOS? I did get mobility and care allowance. But how can I be happy and satisfied when so many of my disabled fellows are being victimised and exploited? All I feel is guilty and miserable. There are so many people who are much worse off than me, both physically and emotionally. How sufferers of mental distress cope I don’t know- although I do- they break down and some commit suicide. This is such a cruel, punitive system. I hate it. My MP ( a Tory) never responds to emails or letters .I am a member of DPAC and join in with as many actions as I can.
    A Pootler – I wish I could do more to help you,but all I can do is wish you nothing the best, and hope that you get some resolution to your dilemma xxxx


  6. Whilst I am appalled at your experience, not surprised. Check the benefits and work website -some excellent advice forums and support. Great advice on completing any disability application forms. Good luck!


  7. Pingback: Living a Half Life | paul8ar

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