I wrote this post in May 2011. 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 re-publish it. It was, at the time, one of my most well-received posts.
MP Jeremy Corbyn has tabled an Early Day Motion, which puts forward the idea that what disabled people need to enable them to work is loads of support, not the current threats and coercion.
Now I’m not functioning too well today – hard to see/concentrate, even harder to breathe, but it seems to me that Mr. Corbyn is missing a rather important point, which is that many chronically sick and disabled people (a rather more complex condition** than just “disabled”), are unable to work at all, not even for themselves, no matter what. I include myself in their number.
**Being disabled through illness, as I am, is a world away from being disabled through, say, the loss of a limb. The amputee has a handicap to deal with. I, and many thousands like me (and not least those who are mentally ill), also have handicaps to deal with, the important distinction being that we still, every day of our lives, have to contend with the causative agents, the illness(es) which caused, and continue to cause, our disabilities – it’s a vitally important distinction that is almost never made these days, but chronically sick and disabled is not the same as plain-vanilla “disabled”. Corbyn fails to address that, too. Everybody does, possibly for fear of offending one side or the other. Well screw that – we’re suffering because nobody wants to accept that our disabilities are not fixed and immutable, but continually renewed, even amplified, day after day after day after fucking day… A fixed definition of disability does not work for us, which is why I always use the term Chronically Sick and Disabled.
Were I to be self-employed, for example (something Corbyn appears to favour), I would surely starve, and/or be made bankrupt in very short order (though where I’d get the startup capital remains a mystery). People like me – and I am by no means unique – cannot be “incentivised” (aka threatened), or supported into work, because working is simply impossible, for ourselves or for an employer.
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 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 – has fluctuated. There have been days when I was fit for work. Even, at times, several such days in succession. Not enough, over a span of 25 years, though, to get anywhere near what would be needed to hold down a job. And had I gone out to work on, say, a Monday, I would have been out of action until about Thursday. In fact the very act of travelling would exhaust my physical resources for the day. No amount of support-in-depth would, or could, change that.
I can, these days – pay attention Nadine Dorries – 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 Dorries would interpret that as being able to work at a computer for an employer.
That’s impossible on several levels, not least an almost total inability to travel. And what I do at home I do at my own pace. That means that sometimes I can knock out a couple of thousand works pretty much without pause. Other times, like now, it’s like pulling teeth because, today, the process is continually interrupted by bouts of coughing my nuts off, and it’s taken several hours to type this.
That is utterly unacceptable in a work environment.
So, while I agree 100% with Corbyn’s idea that those disabled people who can work should be supported as intensively as is required to enable them to do so, we have to accept that those in the chronically sick and disabled community might, quite genuinely, be utterly incapable of work, or of simply going out to work, if they wanted to (and, despite what this government would like you to think, many would love to be able to work, as long as their 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).
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.