The following is being sent out by me to all newspapers not hiding behind a paywall. It’s already been sent to the Guardian.
I have no objection, providing the source is properly acknowledged, to it being copied and sent to whosoever you think can make a difference.
“Chronically sick and disabled” is really not the same as “disabled”.
With the looming Paralympics, which will almost inevitably, given the government-sponsored hostile mood of much of the country, reflect badly on the chronically sick and disabled community, I thought it was timely to write this letter.
Not least because, when the Paralympics do arrive Grayling and Duncan Smith will use it as a stick to beat the chronically sick and disabled, ramping up disability hate – and hate crime – to insanely dangerous levels.
The overwhelming problem, which this government seems incapable of understanding (or simply doesn’t care, which is more likely), being chronically sick and, as a result, disabled, is not remotely the same as “simply” being disabled. For a start, even if I were a sporting person I could never be a Paralympian. I used to be an archer, and a very good one, but the sheer number of drugs I have to take (15-16 on an average day, which is not that unusual), would have kept me out of serious competition.
Many chronically sick and disabled people (a rather more complex condition** than “disabled”), are unable to work at all, not even for themselves, no matter what. I include myself in their number, even though I am past working age and have no dog in this fight, what I have to say still needs saying.
**Being disabled through chronic illness, as I am, is a world away from being disabled through, say, the loss of a limb (there are many other reasons, physical and mental – I’m trying to keep this as simple as possible). The amputee has a handicap to deal with, quite possibly pain too but, on the whole, a finite event. I, and many hundreds of thousands like me (and not least those who are mentally ill), also have handicaps to deal with, but these are, to flog an analogy to death, as if the amputation is repeated endlessly, the important distinction being that we, every day of our lives, have to contend with the illness(es) which caused, and continue to cause, and to worsen in many cases, our disabilities – it’s a vitally important distinction that is almost never made these days, but being chronically sick and disabled is not the same as plain-vanilla “disabled”.
Grayling and IDS fail to address that distinction, and we’re suffering because nobody wants to accept that our disabilities are not fixed and immutable, but continually renewed, even amplified, and often infinitely variable, day after day after day after day… A fixed definition of disability does not work for us, which is why I always use the term Chronically Sick and Disabled in my blog.
People like me – and I am by no means unique – cannot be “incentivised” (for which read bullied and threatened), or “supported” – a term which includes slave labour – into work, because working is simply impossible, for ourselves or for an employer.
Take my case again. Hell, why not, it’s the one case I’m expert in. In 1980-81 my sick leave was running at 30%, before my employer started making go away noises (and it was only allowed to reach such dizzy heights because I was very, very, good at what I did (in a normal year I would expect to have 4-6 weeks off work, ill). By 1986 I had become so ill that work, for me, might as well have been a concept from an alien universe.
Over the years since then, my condition – admittedly rather complex (and now, terminal – I’ll be lucky to see out the year) – has fluctuated. Over the years there have been days when I was fit for work**. Even, at times, several such days in succession. Not enough, though, over a span of 26 years, to get anywhere near what would be needed to hold down a job, even for as long as a month. And had I gone out to work on, say, a Monday, I would have been out of action, as a result, until about Thursday. In fact the very act of travelling would exhaust my physical resources for the day. No amount of support, bullying or threats would, or could, change that.
**These were the exceptional days. A simply good day is simply one during which I’m not crying because of the unending pain, or suicidally depressed, for the same reason, or drugged into oblivion – a rare event.
I can, most days, sit at my computer all day. Sometimes I write, mostly I read, but I can be here for 8-10 hours a day. Hell, why not? I have to sit somewhere, it might as well be here, but there are those, like the egregious Nadine Dorries, who would interpret that as being able to work at a computer for an employer. So, apparently, would Atos these days, but mercifully, age has taken me away from the brutally dishonest shambles that is the ESA work capability assessment.
But working at a computer for an employer would be impossible on several counts, not least an almost total inability to travel (I’m housebound, can travel only by taxi, and then only short distances). And what I do at home I do at my own pace. That means that sometimes, on a very good day, I can knock out a couple of thousand works pretty much without pause. Other times, as it did this week, it can take three days to type, perhaps, 2,200 words, the process is continually interrupted by bouts of coughing, the need to urinate (I have chronic heart failure plus aortic valve calcification and stenosis, it’s killing me and causes me to take high doses of diuretics, which on days like today can cause me to pee every 10-15 minutes), along with much more health-related buggeration – in 1983 I was struck by lightning, which did a lot of CNS damage, fried my feet (literally), and damaged most of my joints and, in case I get bored, I have severe COPD and widespread osteoarthritis.
In addition, every 6 hours, round the clock, I have to take my medication – the main tranches anyway, other odds and sods are tucked in here and there.
None of this is conducive to going out to work – I am the very definition of chronically sick and disabled, since simultaneous whooping cough and measles trashed my lungs at age 2.
And let’s not lose sight of the fact that we’re not actually talking about me – I’m just the example – there are hundreds of thousands of people similarly afflicted by intransigent, often variable (which usually means fluctuating from bad to worse, to horrendous, with the very occasional, and brief, swing in the opposite direction).
So, while I agree that those disabled people who can work should be supported as intensively as is required to enable them to do so (always assuming there are jobs, which currently there are not), it needs to be accepted that many, probably most, of those in the chronically sick and disabled community are, quite genuinely, utterly incapable of work, or of simply going out to work, if they wanted to. And, despite what this government would like everybody to think, a great many of us would love to be able to work, as long as the necessarily extensive sick leave could be accommodated (i.e. kept on full pay). Essential, but never going to happen when so many able-bodied people are available for jobs which, let’s face it, just aren’t there.
A chronically sick and disabled person is, by definition, not going to be available much of the time because they are too ill and, realistically, no employer would take them on, not even if the government made up their pay when they were off sick, because it’s not just about money – it’s also about fairness to the colleagues who would have to pick up the slack when I, let’s say, am having 3 months off with an intransigent respiratory infection (as in 1980 and again in 1981 for 2 periods each in excess of three months, and repeated at regular intervals ever since).
Many members of the chronically sick and disabled community are not only incapable of work, they are, for the very same reasons, totally unemployable, and that’s a fact that simply is not being taken into account by – well – anybody. And it’s high time it was.
And it needs to be impressed upon the public, and the press, that whatever propaganda emanates from Grayling, IDS and his Lie Factory, or Cameron whose insane hatred of us is responsible for the situation in which we now find ourselves, that the Paralympians are as far removed from the chronically sick and disabled as the able-bodied Olympians are.
We are simply not the same people.