Thursday, 11 October 2012

A Walk In The Park

This week, we are firmly in the present.  In this particular present, I am in bed with a very painful gut and problems eating. I have hardly any energy and none of this is helped by the pneumatic drill outside my bedroom window that is redoing the work it messed up when it was last outside my bedroom window just a couple of weeks ago.  I’m having a flare-up and Haringey council is having a fuck-up.  This is not my best day.  Fortunately, my pain will be under control when I take the requisite drugs later on, but that’s probably not the best way to write, so I’m doing this first. Thanks to the NHS, my pain will be relieved; if the flare-up continues for too long, I will go and see my lovely GI Consultant at the hospital. The IBD nurse has already called this morning to make sure I’m ok and that the pain relief is adequate.  I love the NHS and I’m going to resist my usual political rant about this corrupt and morally bankrupt government selling it off in bite sized chunks to the likes of Richard Branson and Cameron’s pals from Eton.  Yes. Resisting that.  Because I’m actually going to vent my – strangely healthy – spleen on a different, though related subject.

I’m going to talk about Atos.  It’s risky, I know, not least because I’m yet to have my DLA reassessment, but that’s also exactly why I need to do it.

I first got ‘awarded’ DLA in 1992 – I don’t remember the date with any clarity, but I know that’s when it was first brought in, combining mobility allowance and attendance allowance, neither of which I’d ever received.  I do remember the day the doctor was sent round to assess whether or not I was eligible.  At this point, I was pretty sick, though also pregnant.  My Crohn’s had been up and down, but my energy and stamina were mostly down.  When the doctor came round, I was in bed.  Husband sat next to me, on the bed, and the doctor sat in an armchair at the foot of said bed which was, to be precise, a futon, so he was actually looking down at me.  At us.  Without having discussed it previously, husband and I found ourselves doing a good cop/bad cop routine.  I was saying things like, ‘Oh, it’s not so bad, I still have a pretty good life,’ after which he would look at me, aghast, and say words to the effect of ‘Are you insane? You can’t even lift a pan of vegetables off the stove.’ 

The thing is, I don’t like that; I don’t like talking about what I can’t do. I never have liked it.  I much prefer to focus on what I can do; that seems to me a healthier and altogether more positive way to live.   But in this climate, with this unelected government, with that bastard Osborne promising this very week to cut benefits by £10 billion (and don’t get me started on Cameron), I have a feeling it’s what I’m going to have to do.  What I should do, if I don’t want to lose my teeny tiny share of what will be left of that benefits pot.  I don’t hold out much hope; we’ve all heard the horror stories of the ESA reassessments. 

Of course, if my reassessment was today – if one of the Atos lackeys was to knock on my door and come in to make sure I’m not conning anybody this afternoon, I might stand a good chance of keeping my benefit. Or rather, getting the new one – the PIP, or Personal Independence Payment. It’s not a reassessment according to the government, of course – it’s a completely new assessment for a new benefit that replaces DLA (Disability Living Allowance) but isn’t the same. Clear? No, me either.  And there’s no chance of them knocking on my door today because Londoners aren’t due to be reassessed, assessed, checked up on or pushed off of DLA/PIP until June of next year. So until then, I’m safe.  Which is kind of annoying, because on days like today it’s all I can do to lift a hardback book.  If I needed to get to the hospital or the doctor’s, I’d have to either drive – which I probably couldn’t, and obviously shouldn’t once I’ve taken my pain relief – or be driven; either way I’d be grateful for my blue badge that means I can usually park near enough to these places to manage the walk in without wanting to lie down on the pavement and cry.  This is one of my very bad days.

But there are other days – more of them since I had the bag then there used to be – days that are amazing.  Days when I can walk to and then around my local park, watching kids play and parents shout at them. When I can touch trees and feel grass between my toes if I take my shoes off.  I’m thinking of summer days, obviously – they’re the ones I like the best. And I had a few of them this summer.  I went with son to Waterlow Park and we walked and marvelled and watched geese on the lake (pond? Is there some kind of body-of-water delineation system? A size thing? It’s probably a pond) and then we sat down on a bench for a while and just people-watched.  I loved those days, but I feel I can’t and mustn’t talk about them. I certainly shouldn’t write about them on a public forum like this. I should keep them a secret, possibly even lie and pretend they didn’t happen, for fear of being seen as that guy with the bad back who works off the books as a window cleaner, shooting up ladders, and then plays a round of golf, all while claiming a massive rate of sickness benefit. You know the guy – the Daily Mail and the Sun are always finding him. He lives down the road from that healthy bloke who has claimed enough benefit to buy a huge house with a pool and a villa in Spain.  No, wait, isn’t that the politician who cheated his expenses – it can get so confusing sometimes…

Anyway, I’m not one of them. I’m not a scrounger or a politician – I’m not actually sure I know the difference between the two, except that one gets pilloried and the other gets a Cabinet position – I’m not one of the mythical 30% cheating on benefits either.  I’m not even one of the 0.5% the DWP itself says is the real figure for people who are genuinely making fraudulent claims. I’m sick.  Chronically ill with an incurable disease (see, just saying that is depressing – it’s not how I like to think of things; it’s certainly not how I like to think of my own life) that acts like most chronic disease in that it varies in severity from one week to the next.

Also, DLA – and the PIP that comes after it – is a benefit for people who work as well as people who don’t.  It’s the only benefit I’ve ever claimed.  I could’ve claimed sickness benefits at many points in the last decade or two – there have been years at a time when I couldn’t work, when I was too sick, when I was having or recovering from surgeries, but it never seemed right. I didn’t ‘need’ the money, in that we wouldn’t have been destitute without it, and for a while there I was still getting sizeable repeat fees from tv shows I’d written; husband had a lot of work, there were people who needed that money a lot more than we did.  Those things have changed now, but I haven’t. I’m sick, but I’m well enough to write as long as I’m not having a flare-up like I am today. Today this post is as much as I can write and I shall probably fall asleep after I’ve typed the last sentence. After I’ve typed the last sentence and taken my morphine.

Ultimately, I refuse to buy in to this Atos-inspired way of thinking.  I won’t accept that I should wallow in my disease and take to my bed for ever more so that they’ll give me a fairly small amount of money every week and allow me to keep my blue badge.  What kind of a society is this that this Coalition is building? A society where those of us who are sick or disabled should be defined by those things?  I will not do it. I’m not going to play.  I’m going to carry on celebrating my good days – I’d shout about them from the rooftops if I didn’t have a fear of heights. And ladders. (Nobody’s going to catch me cleaning windows.)  I will continue to cherish going out and having coffees and lunches with friends; I will carry on getting stupidly excited about using public transport and marvelling at the Oyster card system. I’m still going to get a buzz out of walking to the corner shop just a couple of hundred yards from my house – I say walking, it may look like that from the outside but in my heart it’s still so much of a novelty for me that I feel like I’m flying to the local Londis.  After a couple of decades of not being able to do those things at all, I’m grabbing my right to love doing them with both hands and anybody who thinks I should do otherwise can go join the Tory party. 

Is Atos really going to punish us for doing this? For trying to be well and ‘normal’, instead of sick and crippled and downtrodden? Is this what Cameron’s big society wants from those of us who aren’t completely able-bodied? Because if it is, there’s something far more rotten and insidious going on than anybody is admitting to, and certainly there’s more than enough horrors that we already know about.  Like an inverse Robin Hood, this government is taking from the poorest and weakest and giving to the rich fat cats, and how can that be right? This isn’t meant to be a rant about government, though I suppose that’s an inevitable by-product; it’s meant to be a spleen-vent about the impotence forced upon those of us who just want to work and have that bit extra we need to live on, so that we can.  Those of us who want to be well and functional and a useful part of society.  Most of us, really, when you think about it.

It used to be that when DLA was assessed and reassessed – before I was granted it ‘indefinitely’, as I was some years ago now – they would ask about your worst day.  If that’s still the case, then we might be okay. I might be all right.  I – and thousands of others like me – might actually get PIP.  But somehow, I suspect it’s not going to be that easy. 

I’m going to take my morphine now and think about fluffy wuffy clouds for a bit. Goodnight.


  1. Your anger and disgust at these days of inequality and downright evil are shared by many of us, Wendy, and you're far more reasonable than I can manage at present

    Love your work, as ever

    Keep On Kikkin!!


  2. Hi Wendy, I can't believe I've never seen this blog before.
    I got here through a link by Stella Duffy.
    I've just been reading back through the blog and it's fantastic,
    the writing is incredible, and I think people do need to
    know what goes inside the health industry, we need to hear
    stories of people like yourself who have had first hand dealings with
    doctors and consultants and so on. I think this post in particular,
    A Walk in The Park, is one of the best pieces of writing I've read around
    ATOS and just the Tories more generally and actually how fucking
    evil they are, I don't believe in evil, but they are really testing my non belief.
    Anyway, this blog is a complete political, social and comical delight,
    thank you very much

    Jonny Liron

  3. Hoping you get plenty more good days and get to the park. Neither Atos nor the government should define how a 'sick' person has to act. I don't know how we got to this. Every sick person in this country has a right to enjoy life if they can, whether they're suffering from terminal cancer, Crohn's or other rare conditions that the general population doesn't understand or see.

  4. I have never claimed any sickness or disability benefits through ineligibility (despite not being able to work for a few years and really struggling financially before I found my freelance feet), so fortunately I have never had to explain how some days I am able to skate and play roller derby.. yet a few days later I might be in morphine requiring agony and unable to get out of bed.
    Finding sport/physical activity that I enjoy has made a huge difference to my health and pain levels, so I think people should be encouraged to do whatever they are capable of, without the looming fear of losing benefits.
    As much as sport and medication have helped with my far less serious medical issues, I still have bad days, still don't have the energy that a regular person would have.. but of course I try not to go on about that too much, for my own sanity as much as anything else, as nobody wants to define themselves as just a sick person.

  5. Well said baglady.
    Surely the really sick people are the ATOS operatives who can do such obscene things to fellow human beings, and sicker still are the government minds that thought up the scheme.

  6. I write about the Atos regime - a lot - in my Vox Political blog, and you're right - it's all about whether you can or can't do particular things. Unfortunately, the playing-field is tilted so much that you get marked as 'fit for work' if you can push a button (what job do you know that involves pushing a button with one finger?) and since the current ESA assessors may only put 13 per cent of the people they examine into the 'support' group - who get unlimited benefits - we can expect this regime to continue into PIP. The aim is to push people off of benefits, regardless of what happens to them next (thousands have died).
    My girlfriend is disabled, and has been for many years. She's in the work-related activity group for ESA, which means the benefit will be cut from the beginning of August next year. She also receives DLA - but we have doubts about whether she'll get PIP. Why? Because, like you, she has good days. Like you, she doesn't like to talk about what she can't do - in fact it upsets and humiliates her. Like you, she'd rather present a brave face. That's exactly what these assessors need, to push you off benefit.
    Let's not forget that this is all because a cadre of highly-paid bankers ran their firms so badly and built up debts so high that only intervention by national governments was able to stop them from collapsing, taking the economies of the Western world - and all our private savings - with them. We are paying off debts run up by people who should be perfectly capable of devising and implementing their own payment scheme - they are bankers, after all. Those of us on benefits are feeling it more harshly because the amounts we are paying to this 'Save A Banker' fund are coming out of the money we would otherwise receive.
    It's corrupt; it's murderous; it's wrong, and it won't stop just because you and I can create a reasonable argument against it. Reason has nothing to do with it.
    Sorry - I'm ranting.

  7. Am lying here (reading this in bed) with tears streaming down my face, because your world and mine have just collided. Not the condition, but the variable nature of our disabilities,for which now, instead of rejoicing in, we will be fearful of the good days in case they deny us the ability to claim the allowance which permits us to enjoy them. Like many chronically sick people, my DLA pays for my PPC, for my Simply Health membership, so I can visit the osteopath as often as my condition requires, for CBT, which has hauled me from a pit of despair and back to enjoying life, for vitamins supplements and for a lady to walk my beloved dogs, and for another to mop the floors and vac round, freeing up my husband to work full time, shop , cook and care for me when needed. That sum of money and blue badge are a lifeline of hope to me, and like you, I am now terrified to enjoy the increasingly fewer number of good days incase they cost me my financial crutch.