“Chronically sick and disabled” is really not the same as “disabled”.

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.

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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.

 

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9 thoughts on ““Chronically sick and disabled” is really not the same as “disabled”.

    • Yep, that’s working, Fred. Maybe there is a problem, though – come to think of it I’ve had no comments for a while, and I expected more response to this.

  1. well here’s one for you Ron. lets hope it gets through. i applaud your stance on this topic. have long said its time these nutters at the top spoke to people who are in this situation in the here n now and started understanding what disability is and what chronic illness is and what effect all of it has on day to day living.. anyone can sit at a PC all day but it don’t mean they are doing a lot.or even if they are its not necessarily something that would be of benefit to a firm/ or if they are able to concentrate on much.up-to 5 years ago i could do my own websites, research genealogy and make my own graphics and chat web pages etc. now i cant concentrate on any of that. frequently start dropping asleep at the pc while just trying to answer an email so simply couldn’t be given an important job that needs those attributes. my typing is now atrocious (if i didn’t check this before i sent it you probably wouldn’t understand much of it. even after checking i know the odd typo gets through, 9 times out of 10.time they left us lot alone (I hear his (Cameroons) promise to leave pensioners alone is going to be a thing of the past. was told the next bunch of DLA recipients to be targeted will be OAP’s, don’t know how much truth in it but if it is true whats betting they try saying all our ailments are age related not disabilities or something equally as stupid.

  2. I agree with you whole heartidly, having various illnesses, copd, oesteo all over my body and fibromyalgia. There are days when I can sit at the computer for a while and days where I have a job to even get out of my chair. If I was made to work, who would help me to get to a toilet and even worse take down my underwear when my spine is so rigid, I can’t move my upper body. I live with pain every day of my life in some form or another. Taking strong painkillers knocks me out for most of the day, I sometimes don’t know what day of the week it is. Who is going to employ me when I’m coughing my guts up , I to have recently had a terrible chest infection and it has taken me almost three months to recover and no doubt I will have another one in a few weeks time which is the norm for me. I watched Panorama the other night and they had alot to say about Atos, was very interesting, did you see it.

    • I’ve had respiratory problems all my life, asthma and bronchiectasis originally, now COPD and, like you, I had a seemingly endless cycle of infection and reinfection – until I took over responsibility for treating that myself.

      The problem, you see, is that NICE guidelines prevent doctors from adequately prescribing antibiotics, so respiratory infections are never truly eliminated, just knoecked back, to reappear a few weeks later.

      Since about 2003 I’ve been buying my own antibiotics, and by treating an infection aggressively as soon as it appears (which is usually about a week before it would be bad enough to take to my GP), I can knock it down before it gets a hold. Usually, 2 or 3 days will see it gone, whereas by the time it was bad enough that a GP could find it by examination, ask for a sputum test, and then finally get round to prescribing antibiotics, the infection would have such a hold it would take weeks to get rid of.

      In 9 years I’ve only needed my GP 4 times (when I had a bug my antibiotics wouldn’t treat), whereas, before, I’d be at the surgery every 6 to 8 weeks.

      I missed Panorama. To be honest, they’ve gained such a reputation for dishonest reporting these past couple of years I assumed that it would be incredibly biased in favour of Atos, and I really don’t feel well enough to risk being angered by a TV programme. As it turned out, apparently, they did a pretty decent job.

    • must admit, my docs are pretty good when it comes to any chest infections ive had up to press.soon as i know im heading for one i contact the surgery.,speak to one of the staff(nurses/docs/nurse practitioner etc) and they usually have me in for check within the hour and started on antibiotics and more oft than not prednisolone. usually knocks it on the head then. tho penicillin rarely works these days unless they give me double dose.only had one chest do this year and that didnt amount to anything as meds were taken at first sign. another time a doc came out to me for something else and noticed i was a bit wheezy so left me antibios and prednisolone just in case i needed them but i didnt.. dont know if that will still happen now they have changed how we get to see someone. time will tell. didnt think you could buy antibiotics n prednisolone over the counter. whats your secret Ron?lol.

      • My secret? I was a professional buyer – if something is available, I’ll find it – he said, modestly!

        I get my drugs here http://www.inhousepharmacy.vu/ Been dealing with them for years – good people. They’re based in Vanuatu, near Fiji. Prices include shipping.

  3. Hi Ron,
    Looks like – for me anyway – the only way of contacting you, is via the web, I receive no mail, follow ups etc from your blog, It appears that I’m not subscribed!!!!! Seems very odd? It may be due to those olympic games! or we/you are all on hold, courtersy of HMG. Its just a thought.

    Fred.

  4. Excellent post Ron, I agree wholeheartedly with what has been written. A lot of your experiences mirror my own, I have Lupus, arthritis, irregular heartbeat and a raft of autoimmune stuff that knocks the socks off me. Strange thing is that I too have been struck by lightning, but was lucky to not have the same results as you. I have be saying, though not as well or thought out, as you re: disability v chronically sick for years. I shall use my insomnia bouts to read through the rest of your posts, well until the pain relief kicks in that is. Looking forward to reading the rest. Take Care. Brenda

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