Letter of reply

Dear DWP and Tribunal Service,

Thank you for your letter which tells me that I was awarded 6 points after appealing against the original decision to award me 0 points in my claim for ESA.

I have decided not to appeal again because I know that the stress of doing so will likely kill me or, at best, worsen my health to a point where I may never regain any ability to walk, talk or breathe unaided.

My decision not to appeal again may lead you to believe that I know I don’t have a chronic illness: that for the past 11 years, whilst receiving Incapacity Benefit, I have been a whining, malingering scrounger. Nothing could be further from the truth.

I know I am ill. Even my hapless, hopeless GP knows I am ill (presumably that is why he has been writing me ‘sick notes’ since 2001 and continued to do so whilst I was appealing the WCA’s decision).  

No…I know I am ill and, if that man at the Tribunal was a real doctor, he knows I’m ill too but, then, this whole process isn’t really about finding out about who is too disabled or too unwell to work, is it ?   This process of ESA is really about money and stats. It’s about the dreaded ‘descriptors’: a term that has ‘Orwellian’ written all over it.

The ‘descriptors’ are about a series of ‘tasks’ which we can or cannot do,  judged by a ‘trained medical professional’ who can, apparently, see how I am just by looking at me, know answers to questions about how I feel physically, mentally and emotionally without asking me ..and then enter a tick in a box so that a computer will spew out a ‘decision’ about whether I am fit to work at a job which probably doesn’t exist.

So, please don’t take my decision not to appeal as an admission of guilt.

I know the truth and so do you. It’s just that, sometimes, the truth hurts and gets in the way of what you call justice.

Regards,

Cusp (age 56, ill with M.E. since 1972, diagnosed by the excellent NHS in 2001 and messed about ever since)

Spider and the Fly

Sometimes I feel as if I am living inside a web; a spider's web with me as the hunted and trapped fly.

This morning I had a phone call from the JobCentre to talk to me about my ESA appeal. The person I spoke to was pleasant, helpful, charming.  He was trying to do his best whilst employed within a system which isn't working and is not 'person-centred' but 'finance-centred'. It doesn't matter that he seemed to genuinely care about what I told him about my condition and my ability, or inability, to work: he was obliged to spout the mantra about how the old system was based around what you couldn't do and the new system is about what you can do: blah blah blah.

I can do quite a lot of things. Even the brain fog and cognitive difficulties associated with M.E. don't mean I'm stupid. The point is, as I keep on saying, is that whatever I can do, I cannot do it for very long and I have to have frequent rests: otherwise I come to a complete standstill and relapse; become bed bound. This way of being isn't conducive to finding or keeping most jobs.

During the conversation, the JobCentre employee went through all the documents I (or DIAL) had sent in support of my appeal. It turns out that DIAL have forgotten to said all the supporting evidence that I worked so hard to get together before Christmas. It's all still in DIAL's filing cabinet.  I was also told, again, that probably the most important document the DWP could receive would be the letter from my GP supporting the reasons for my appeal. There is no such letter. The only document from my GP is a hastily completed, scrappy questionnaire where he has deigned to write five word answers and for which he charged me over £40. So I am trapped between an unsupportive GP, a benefits advice support service which is telling me one thing and doing another and a government body which doesn't see me as a person but as a target figure.

Everybody seems to be having a say in how I am, what I should do, how I should act and what's best for me....except me....and I feel powerless to change it because everybody else is in charge. Ultimately, of course, I am in charge of myself but my health, the 'bastard illness', always has the upper hand and yanks on the lines of sticky thread in the web, preventing me from actioning the feelings of frustration, anger, 'I'll show you' and making me feel miserable as well as ill.

What would it take for someone to listen to what I am saying ? This has been my experience almost my whole adult life. First it took nearly 30 years for someone to listen and believe I was physically ill instead of depressed or anxious or lazy. Now I have a doctor who believes I am ill (even though he will not agree with me on the exact diagnosis) but I have another group who believes I am still well enough to work at least 16 hours a week.

I know that this whole situation is bringing all sorts of old feelings to the surface. I don't know what to do with them. I have tried everything I know, over the past 40 years, to resolve these difficulties with my health and to be 'normal'. At this age, I know that the way I feel physically is just the way I am. I am not able-bodied. 

I am very strong mentally and emotionally so I have to deal with physical weakness and try to make a life for myself but I also feel like I am being made to look a fool when I know I am not a fool. 

I feel like a fly in a very sticky web and I know there are many more people out there like me. If only we could really rise up and make our tormentors see sense.

Scary Monsters Super Creeps

In another time, long long ago this song meant everything to me: not just because I was a Bowie fan, not because I adored the freakish costumes and (at that time) state of the art video effects, but because the words meant so much at a time that was difficult and very uncertain.

I never thought that over 30 years on, they would seem so apt again.

Those of you who know me from Facebook will probably know by now that I was found 'fit for work' at my ESA assessment. I wont bore you with the details if you dont already know them but, essentially, this means that I must go and find work (for I am not entitled to any benefits from the State) or make an appeal against the decision in which case I shall be given £30 less per week than I am now until the Appeal panel make their decision. If I win I shall recieve ESA in return for jumping through various hoops that supposedly will enable me ot return to work. In any case the ESA will only last for 12 months and then that's it...no more money, no more support....I'm out of my own, on the scrapheap: a 56 (by then) year old, who has been out of work for 11 years, who has a chronic health condition (according to the GP) yet is fit to work (according to the 'medically trained' assessor at ATOS).

Those are the raw practical facts of the situation. They say nothing about the raw emotional facts of the situation.

After 38 years of living with M.E., CFS,,,call it what you like (I'm sick of the debating and arguments)...I am used to being
disbelieved,
humiliated,
spurned,
blamed,
unheard,
doubted,
ridiculed.

In the past, being a quiet  and sensitive soul (yes that's how I really am ) my reaction, in my youth, was to back-off, retreat, roll over and give in. As I got older and bolder my reaction changed to

'F*** You. Watch this !'  

However, the latter attitude requires energy...emotional and physical and that it something I lacked and lack still.

In all honesty, the last few years before I had to end work were steeped in the latter response: I was so determined to do what I wanted and needed to do (within work/career) after so many years of being held back by ill health that I moved heaven and earth .........and all the expense of my health.

I've learnt now that nothing is worth doing at the expense of my health and that my health is fragile and easily damaged by anything too demanding. So where does that leave me now ? How to respond to this latest insult, scourge of scorn and ridicule (for that's how it feels) ?

I am at a loss.

There is a huge part of me that really really wants to turn round and say

'Right, if you think I'm fit to work then I'll go back to f***ing work and work as hard as I can just to spite you. I'll go back and do all the stuff I've been wanting to do for the past 11 years whilst you have been looking down you nose at me, playing games with my health, happier to bung me my Incapacit Benefit than really try to find out what it wrong with me and help me recover'

'I'll stick two fingers up to you now that your lack of real interest in me doesn't suit you anymore: now that you want to turn the tables and blame me for being ill, and brand me a scrounger and malingerer and either throw me out with nothing or make me join a 'Work Group' so I can make cup cakes and castles out of shoe boxes' 

The other part of me knows this wont work; that I need to stay calm and see what happens.

In the meantime I feel betrayed, exhausted, sacrficed, bewildered, very angry and inept because I am facing a faceless enemy who hides behind spin, statistics, lies and self-interest.  As ever, it seems, I'm up against all the things I hate the most: bullying, deceipt, oneupmanship, competition whilst pasty-faced corrupt, ego-centris politcians and financiers snigger behind in their ivory towers.

Scary monsters, super creeps