The Paralympics and the chronically sick and disabled, a press release.

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.

Ron.

 ***

“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.

 

About these ads

52 thoughts on “The Paralympics and the chronically sick and disabled, a press release.

  1. Great blog Ron and oh so true, I like many take so many medications yet still the pain like I’m experiencing right now can bring me to tears. I’ve taken my night time med’s early in desperation and am going to get in a hot bath in hopes of just a little relief.

    • That’s one reason I drink. Only once a week but, get hammered, get maybe 8-10 pain-free hours – until I wake up again!

      Used to work with a guy who’d lost a leg, and got so much pain from the prosthesis he drank himself to death – started at breakfast and carried on all day. Not “manly” to use crutches or a wheelchair, he once told me. Cretin – apparently it’s manly to turn your liver into leather.

  2. Thanks Ron, this needed saying. With the Paralympics coming up, the focus will be on what can be done by people, and it’s up to our community to make sure we highlight what is needed. We also need to highlight that you don’t turn anyone into a Paralympian by starving them or making them homeless, or denying them vital drugs or treatment. Let’s take the fight to the people.

    • Thanks Kate – it’ll be emailed, with a covering note, to the papers as soon as the closing ceremony for the Olympics is out of the way – too soon and it’d sink without trace.

  3. This is simply a excellent article with very insightful understanding.
    This government have no idea of the differences that exist within the disabled community.
    I’m personally very lucky, I have huge support from my employer, I can at times work from home, but remove that support, I’m in big trouble.
    For many disabled folk work is an unobtainable dream, for others physically/emotionally impossible.
    The powers that be need to see us as individuals not something to put in a forgettable box.
    I have hope, but not much expectation.

  4. Today, August 13, I’ve sent this press release out to the newspapers and broadcast media.

    To date it has received 31 votes, 113 retweets on Twitter and a large but unknown number of other retweets that won’t have been counted here for complex reasons, plus 114 appearances on Facebook.

    In total, at 13.00 on the 13th, it has been read 616 times and is showing little sign of slowing down.

    All things considered, I’m pretty happy with it. I’ll be even happier if the press and co. take some bloody notice of it!

  5. Good luck with the press coverage. I am in Australia but it’s exactly the same here. If I had Twitter would retweet but have shared it on FB. Your point is so valid. I actually envy those who are seen as disabled. they are much more able than I to do anything. When will everyone learn that the majority of us would love to be able to work and contribute. I hate sitting here unable to go out. Who, in their right mind, would consider that we enjoy this half-life.

  6. well said ron. I too fall into the same boat as yourself. would love to work . but its a pipe dream. I sit here with my computer every day sad and lonesome ( my husband and carer passed away in march) i have two teenage kids with hormones and yet i only see the outside through my window. the odd time i manage to get out in a taxi but standing with crutches even for a few mins wipes me out . Good luck with the press coverage we need a man of the people

    • Have you considered a wheelchair? It could make life a lot easier – I’ve reached the stage, now, where going out without wheels isn’t an option (and if I had the room I’d use it indoors too. It does depend very much on where you live (a classic postcode lottery, and total rubbish here in Wirral), but it’s probably worth asking your GP for an assessment referral to your local wheelchair centre.

  7. If you are having problems with moving around in doors consider what my friend does. She puts pillows on a skateboard, lays on it face down and moves herself around her house on it. She does get 2 furry friends catching a lift on her back sometimes though.

    • Assuming you’re not taking the wee-wee, and I’m far from convinced, it’s not all that functional being at ground level, not least because to do anything you have to get up – a wheelchair, even a very basic one, is vastly superior.

  8. Thanks for this article Ron. Its difficult to explain cronic illness to people who dont understand it. Im fed up with”we all get tired sometimes” or ” are you better yet.” Yes im waiting for the “look what disabled people can do in the Paralympics” to be uttered in my direction.DWP are driving me nuts as it is.Im also afraid that this will cause us another backlash of abuse.Dont get me wrong,i think the disabled sports people are inspiring and am very proud of them. I will be watching some of it. Unfortunatly thats all i can do. Living in rural Cornwall there is no public transport for disabled passengers that is reliable or readily available.Our beloved car has to go due to the cost of fuel and day to day running costs. I will soon be limited to the distance my wheely can go and back on a full battery.The cost of constantly fighting for any money i do get has made my CFS/FMS much worse and i have now been told i need to go to tribunal again. Im usually a very optomistic person but am starting to crumble. Are they deliberatly trying to make us all top our selves?They may not be taking the disabled to the gas chambers but they may as well do it because the are slowly killing us all off.What will become of a future generation of disabled children or will they be weeded out at birth. The silly thing is that the healthy general public either dont know or dont care that its happening. Its so sad :-(

  9. Really well said, Ron, thank-you for posting this. I’m so pleased that it’s getting the internet time it deserves. I’ve posted a link to this on my Facebook page and asked people to share the link to spread the word even more if they can. There really is no reference in the media to the variety of disabilities that exist or that so many of us have complex, systemic conditions that are so tricky to work around to get through the day. Any increase in our activities blows our pain and symptom levels through the roof and makes work impossible, and yet the WCA ignores this and so does the portrayal of disability in the media. It needs to be redressed… I love your post, x

    • Thanks Elle. I’ve sent it to most of the papers, and broadcast media, but so far the only response has been silence. I guess time will tell whether they take it on board or not.

      • Brilliant stuff. I blummin’ hope they pay attention, your post is so lovely and clear they certainly should spot their massive oversight pretty quickly. I’ll be doing the same when I’m up to it. We are each of us one, but together we are many. The more of us who can do this, the better. x

        • I just hope people are doing as I suggested, and sending copies to anyone they can think of, with a link back to the original.

          Been read 1,126 times as of midnight, with 154 retweets to date, 175 FB posts, and 45 votes – so people are taking notice – just hope it’s the right people.

  10. Pingback: The Paralympics and the chronically sick and disabled, a press release. | SteveB's Politics & Economy Scoops | Scoop.it

  11. I’m just sorry it’s taken me almost 3 weeks to get round to reading this wonderful piece; you’ve managed to define for me something I’ve been trying to describe to ATOS and DWP for 5 years. I’ve hadn’t consciously realised my own chronic sickness!

    Thank you so much Ron

    Jayne xx

    • Hi Jayne,

      I’ve just re-read it and you’re right – it is a text-book definition of chronic illness, without the medical jargon.

      I also spotted a couple of places where it could be improved but, as it’s doing its job, I think I’ll leave it alone.

      Ron

  12. Thank you for this on behalf of all my friends and probably me one day. As I have started to explain to people, I can do *my* job. But if I were to lose it, and had to start hunting, there are quite a lot of jobs –anything that involved standing for more than ten minutes, anything that needed me to be able to hear people–that would suddenly make employment very difficult to find.

  13. Awesome blog Ron. Very sorry to hear that you do not expect to live much longer and thank you for sharing your testimony to the insanity of expecting the chronically sick to work in a labour ‘market’ with chronic unemployment. I hope you get through to the papers. :)

  14. Fantastic article that really captures the problems at the moment. I also am unable to work due to chronic illness, yet people seem to think you can just ‘give yourself a good talking too’ and get over it and go to work!! The classic is whn they see you having one good day and they think that means you must be ‘cured’ LOL! The para-Olympics always makes it worse as people start saying ‘well look at him/her, they’ve lost both legs and they can still work/compete’… they just don’t get it, and it makes me cry sometimes…

    Sorry to hear that your condition is terminal (makes it sound like a bus stop!), stop worrying about the world’s injustices, you’ve done your bit, go and enjoy the time you’ve got left…

    Middle aged UK man…

    • Thanks – I’d love to be able to get out, but I can’t so I might as well sit here, grind a few axes, and piss off the government. Seems only fair since they’ve hugely pissed me off!

  15. Excellent blog, and a very valid point. I’m in work and haven’t encountered ATOS and this sort of thing personally, but I have MS so you can be damn sure I pay close attention to this and similar issues. I’m 27 and I’ve already lost one job through sickness and unreliable attendance – I absolutely dread the day I need to call on the state to provide for me (single too, so they’ll be providing the “care”!)

    Good luck with this, I’ve shared it on GB.
    Gina

    • Thanks Gina.

      I know that worry – between the ages of 15 and 40 I lost every job I ever had, bar 1, through excessive sick leave until, eventually, I was unemployable. Couple of years later and I was too ill to work anyway.

      Care, by the way, is something of a myth in most areas (in my Twitter group I have people from all over the country, and a handful from the US, so it’s easy to compare notes). Some areas provide excellent care and levels of equipment others, like Wirral, were I live, absolutely nothing. It pretty much defines “postcode lottery”.

      • I only hope that, by the time I need it, something beyond “hire your own wheelchair” exists in Northants (but should exist everywhere). Someone I know in my area is having to jump through hoops (sadly not literally) to get a wheelchair – I mean, is this the sort of thing people are liable to fraudulently claim??

        But I digress. It was a real eye-opener when I first fell ill in 2008. I try not to bore people by wittering excessively about welfare reforms etc but it could happen to anybody – so shouldn’t everybody take at least see interest?

        Thank goodness for the people who won’t go gotten without a fight, it’s appreciated :)

        • That’s just it, it CAN happen to anybody, and by the law of averages, it will happen to a lot of people who are supporting benefits cuts – hopefully!

          And it must be a very rare family that doesn’t have somewhere among the siblings, cousins, aunts and uncles, and inlaws, at least one chronically sick and/or disabled person. I know mine did (apart from me, that is), and I know others, too – it must be very common – yet when it comes right down to it, almost nobody looks beyond their own household. If they did, they’d be a hell of a lot more worried.

  16. As a teenager, I was a disabled athlete, doing international-standard times. Now, I am again a disabled athlete, preparing for National Championships. In between: 20 years of multiple daily seizures, repeated severe depressions and more. High-level sport training: obviously off the table. Heck, I was told I needed 24/7 care and nearly put in an old age nursing home at 29.

    I’m lucky: my mood disorder is relatively well controlled now, and the experimental epilepsy medication added to my combo 2 years ago reduced my seizures by 90% (that said, my last epilepsy related emergency hospitalization was last week).

    Even when my seizures were very uncontrolled, I could *technically* do some work. 15 hours or so per week, at significantly slower than ‘normal’ pace, working from home, and with completely flexible working hours. Incredibly, I actually *did* get employed under those conditions, more than once (short term disability research projects) – but obviously not a list of support needs most employers are willing/able to accommodate! I suspect the average employer couldn’t even accommodate my current seizure frequency (not counting auras, a bit less than one a week).

    The average employer would also be unable to accommodate the needs of several Paralympic athletes I know – some with high physical support needs, some multiply disabled (eg cerebral palsy + learning difficulties + registered blind).

  17. hi, ron –

    i followed your link from the guardian’s robert jones’ article on the paralympics, and have bookmarked your site to enjoy later – many times, i’m sure.

    i’m amazed – you’ve pointed out to me something that i’ve never even considered, and i’ve been chronically ill and disabled for years and years. perhaps this distinction that you write about speaks to the incredibly frustrating feelings that abled people have toward us – society as a whole has pretty much always been able to tolerate/understand accidents (eg, say, loss of a leg in a farm accident), but it has never been tolerant of people who are sick. the latter is seen as a weakness (and couple that way of thinking with politics, and you have someone like david cameron).

    you’ve really opened up my eyes and given me something to think about. i’m terribly sorry about how you’re doing now, but i’m deeply appreciative of and impressed by your work – rant on!

    • Thanks Jane.

      As well as the Guardian having had multiple copies, I’ve been inserting the link into any relevant comment thread I could find – the Robert Jones thread is the only one that’s generated a response, and over 140 people have clicked through so far.

      Here’s something else to think about, though – there are no chronically sick and disabled people in the Paralympics – only those, to put it simply, with broken bodies or brains. For many, the drugs we have to take would exclude us, but the Paralympic system of assigning people a classification, depending on which part of their body or brain doesn’t work or is missing/broken and we simply don’t fit, which illustrate perfectly what I said – We really are not the same people.

      It’s also the reason why I always use the term “Chronically sick and disabled” – it’s a vitally important distinction.

              • Danielle Brown, has reflex neurovascular dystrophy, a type of Complex Regional Pain Syndrome. She’s a student so I assume she hasn’t come up against ATOS and the employment situation yet. She’s now a qualified lawyer so she’s in a good position to present her case if she ever does have the misfortune of crossing their path.

  18. Well said, sir, well said. I’ve been stuck with chronic fatigue for six years, during which time my brain just does not engage with reality for more than a couple of hours a day — I am incapable of doing more than half-an-hour’s work mental work before I must rest, then I’ll try to do some more. I would love nothing more than to have my old, long-gone capabilities back.

    Whilst I gladly applaud anyone who has challenged his or her disabilities in order to run, jump, swim, ride a bike or whatever, these people in Stratford are not suffering from chronic conditions that prevent them from expending mental or physical energy. They have physical barriers to normal motion, ones which they are able to challenge. What I have, what thousands of people have, is something quite different. And I fear that the official subtext to the Para-Games is: ‘They can do it, so will you.’ These people’s brave challenging of their conditions will be used to hammer those of us who are equally but differently handicapped.

  19. Thank you for this Ron. I have a shopping list of chronic illnesses as well as disabilities but it’s very hard to get people to understand. Yes, I’m sick today and I’ll be sick tomorrow and next week, month year, decade, no there aren’t any drugs that work or are suitable. The Paralympics has just heightened the scrutiny that we’re all under.

    • I stumbled on a Guardian article on the same subject yesterday, and the comments were largely, if not mainly, negative. So I posted my own comment, with a link to this. So far, 180 people have clicked through. Since no-one has posted a negative comment here (though my blog is set up to filter out abuse – life is too short to waste on psychos), I’m hoping I’ve convinced at least a few of the hostile, or given them something to think about, at any rate.

      What every single person who is hostile to the disabled cause never thinks about is that they are all just one bacterium, or virus, or accident, from joining us. Very, very, short-sighted.

  20. Well done Ron! I have a friend who is chronically sick and disabled and she is currently fighting (or trying to) to get more help, but the inference seems to be that her husband should help her! He does his best but has a full-time job. Instead she has been sent for assessment by the DWP, who want to take away her benefit. She has to take so many drugs that sometimes she can’t even think straight, so the thought that she could do a job is laughable. She now feels under so much pressure that she has depression – yet more tablets!

  21. Hi Ron, I came to your blog via the Guardian article after being surprised by all he negative comments there. The Atos sponsorship of the Paralympics gave me the same concern as the author of that piece – ie that the message received might be “if they can do it, other disabled people must just not be trying hard enough”. I hadn’t considered the fundamental distinction between the tv-friendly image of “disabled people” and the reality of the often very complex health problems faced by people in receipt of DLA etc. This seems a very important point.

    I’m sorry to hear that you feel you haven’t accomplished much with what you’ve written – I wonder if I might suggest some slightly different approaches? From a journalist’s perspective, I feel like what you’ve written is almost “too good” for a press release – social media is great in some respects, but if a journalist takes the essence of what you’ve written and turns it into an article, there’ll be plentiful evidence that the nuts and bolts came from you.

    I note one of the organisations above has sent a letter to the newspapers. Have you considered doing the same, or rather, tailoring responses to individual articles that touch on these issues? (many papers reject letters that have also been sent to all of their competitors) A powerful way to get your message across might be to find instances of the conflation you identity (of try-hard-enough-and-the-sky’s-the-limit disability with chronic, debilitating conditions) and concisely reject them, as you have above.

    Despite, or perhaps because of, the explosion of tweeting and web commenting, I feel like the letters page of a national paper is perhaps one of the best platforms for succinct, well-argued policy debate.

    • Hi Shona,

      I posted this link, as I have done on several other threads, and in other newspapers, because the response was so negative and ill-informed (to tell the truth, though, even I felt that some of the negative comments were justified – it was whiny, to a degree that pretty much overwhelmed the message). Got a whole load of people clicking through, too, whereas other had no measurable effect, so hopefully I might have changed a few points of view.

      And I suppose this thing might have accomplished something, in that the situation in newspapers and in the broadcast media might be a lot worse than it currently is without it, but given the total absence of feedback, I have no way of knowing if it’s even been read, never mind acted upon.

      The Society and News editors got copies, as did Amelia Gentleman (who turned out to be on Olympics duty and then on holiday), as disability seems to be her brief, and Polly Toynbee, in response to an articles she wrote. And I know others sent links to the Guardian too, but answer came there none.

      I’ve seen, though, over the past week or two, my own words come back at me, mostly from the Guardian, and sometimes from other blog posts, not just this, so someone there is reading my blog on a regular basis – just wish I knew who.

      Looking at Twitter this morning, though, is a depressing experience – despite all the evidence that they are an utter waste of everybody’s time and effort, epetitions continue to proliferate. The only one that’s had any effect was the Hillsborough petition, and I suspect that was just PR, to shut them up (it’s high time they let it go, and let the dead rest). Nothing is going to change now.

      If all that futile effort was put into a letter-writing campaign, it might actually have an impact. The problem, though, for those of us who are housebound, is that newspapers show only a few letters online, which means that it would be better suited to those who are able to get out and buy newspapers (and given the price of papers like the Guardian, afford them).

      I’ve had people say “I wish I could write like you”. Fair enough, it’s a laudable ambition, ;) but the only person who needs to write like me is me. Just be yourselves and remember to hit the spellcheck button!

      And I say that because if anyone is going to undertake a letter-writing campaign, it’s unlikely to be me. I’m far too ill to commit to anything that needs my attention, and a prompt response,** on a regular basis – I just don’t have the energy. Most days it’s all I can do to keep my blog supplied with new posts.

      **There’s another problem, too. at the back end of the last century, and the beginning of this one, I had scores, maybe even hundreds, of letters published in the Guardian, so much so that people were asking if I was really Keith Flett! These days, I couldn’t get a letter published if I wrote it on money, and I’ve no idea why. I think it might be because the only letters page I see in its entirety, and occasionally respond to, is in Weekend, the Saturday mag, and as that’s dominated by people who have posted comments online – immensely unfair to those who have to write in by mail, and why should commenters get two bites at the cherry anyway? – it’s hard to get anything published.

  22. Pingback: Bread and circuses: some thoughts about the Olympics, Paralympics and theory « Classically Inclined

Comments are closed.