Saturday 15 December 2012

T'was The Night Before Christmas - By @Hossylass

Twas the night before Christmas and all through the House

MP’s were feasting on subsidised grouse

Their expenses were listed and nobody cared

That the cries of disabled were going unheard

The Members soon nestled in tax funded beds

While visions of riches danced in their heads

And a subservient underclass doffing its cap

Settled their brains for a long winter nap

When out in the streets there came such a clatter

They crawled from their beds to see what was the matter

Drapes cast asunder, it was clear in a flash

That the strivers were clearing the Ministerial trash

The cleaners had trudged in through 8 inches of snow

To buff and to polish the offices below

No living wage at the end of the day

Just tax payer subsidised minimum pay

And out in the doorways of numerous places

The homeless and helpless shielded their faces

Their hopes and their dreams had drifted away

Replaced by despair at another new day.

But this year at Christmas a miracle appears

An army of deviant kind volunteers

Disability Ninjas armed with the facts

Savaging proposals with a symbolic axe

And along the blade the words burn bright

“You will not destroy us, we will turn and fight”

To speak for those who’s voices are small

Voices ignored, if heard at all

Churches and Unions stood up to fight

To demand what is reasonable, and what is right

Twas the night before Christmas and all through the land

Tears are shed at what is planned

By the people who with enormous wealth

Are happy to endanger the very health

Of the people who quietly every day

Keep the country ticking away

NHS nurses and other health workers

In danger of becoming next weeks “shirkers”

But the Charities, activists and Unions united

Now they will help the lives of the blighted

The poor, the rejected, the lost in despair

We will reach out and comfort and show that we care

Twas the night before Christmas and all through the lands

The sword of truth awakens in our own hands

And when it seems to heavy to swing

Remember the miracles that Christmas can bring.

Friday 14 December 2012

If you believe... they put a man on the moon

Today Esther McVey announced some really good news, especially if you were awarded a lifetime award of Disability Living Allowance many years ago.
Disability Living Allowance came into existence nearly 20 years ago as a way of acknowledging that being a disabled person in an able-bodied world incurred extra costs.  And it does, in all sorts of bizarre ways that don’t occur to those deliciously accomplished Adonis’s, the able-bodied. Or the “Squandering your health without the assistance of a crystal ball” as I like to call them.

Now I could start with the big things, like how the hell do I get to the GP surgery, or the Blue Circle of Health and Excellence Centre as it is probably now known. I could get a bus. Except I cant. There are only three a week, one on a Tuesday and two on Fridays, which overlap. And they are not accessible, they are exempt as they are mini-buses. I’m pretty sure they are Leyland Dafs to be honest, with three spiralling vertiginous steps that would test a mountain goat.

So the not very cheap or cheerful bus is not an option. Taxi maybe? Rarer than mountain goats to be honest, and it’s odd but no matter how sexy I try to sound on the phone, I can’t convince them to travel 18 miles to take me to a GP surgery 6 miles away. Thats proof enough, if you needed it, that the country is going to the dogs… It’s not like I am going south of the river. OK, there is no chance of a return fare, but there is also no chance of the taxi driving back to base only to turn round, collect me and return me home. River or no river.
Maybe I could ask the neighbours – I’m sure they would love a trip to the Happy Privateer Pub and Health Centre, they could read very old copies of Cumbrian Life and plan their escape to Yorkshire whilst they wait for me. Except the neighbours consist of, get this, working people. Or disabled people. Or People who can’t leave their child/dementia suffering Mother/milking mountain goats and take me. And to be honest, they don’t want to.

So instead I buy a car, and pray that I can drive to the Seventh Circle of Health, Total Rehabilitation and Diagnostic Centre, and that I can drive back again. It’s that or lie on the floor and fester until the Grim Reaper arrives. Now how does a dribbling cripple buy a car? Well cheaply is the main criteria. Cheap with a big boot to fit the NHS “one size fits all” home gym and workout machine, aka Fat Bastard, wheelchair. It’s a futile aid, as I can’t self-propel without dislocating various parts of my upper body, but trading up to a powerchair means getting a hoist fitted in the car – neither thing I can afford.

But what about Motability, the scheme where all dribbling crips get a car? Well to be honest, its timing. To get a motability vehicle you have to be very disabled and almost always put up a lump sum. I don’t have lump sums, just sore lumps. And you have to have a decent award length. And a bit of planning… because usually I only get my award a few days into my award, which leaves less time to get a car. Obviously if the DWP gave me an indefinite award then I could get properly organised…

Then there is kitchen roll. Disabled people use a disproportionate amount of kitchen roll. And crockery. If ever there was a reason not to allow a crippy mate into your kitchen it’s this – your insurance will go up. Crips like me are disaster magnets. We are our own event horizon. We are the envelope that got pushed through the shredder by mistake. Trust me, you can’t trust me. I could cause carnage in a vacuum.

Then there are heating bills. I could jump up and down to keep warm. This would work by me jumping up, coming down, and going to hospital, where I am assured it is warm. Or I could put another jumper on, except I can’t, without help. I suppose I could ask the neighbours to help except…

Ferrules. Damn you ferrules, you 50 Shades of Grey Rubber. You are the bane of my life. Slippery when wet, sticky when dry, squeaky on shiny floors and sodding expensive given that you leeched out of a tree. I am assured by people who take these things seriously you can get non slippery, non squeaky, pretty ones that cushion your wrists. In fact there are entire factories with real live designers just designing better ways to part you from your allowance. All I have to do is look on the  internet…

Ah the internet. What a joy. If you can type. Or use specially trained speech software. And maybe see or hear what you have written. Of course it’s not free… neither is the assistive technology that is required if you are a crip. Its gets a bit more expensive when you factor in the crip capability of being able to demolish any item with a simple sneeze. Of course I could go to the library, which is opposite the Privatised Parts and Reclamation, Health and Reprogramming Centre, but we have already established that this could be hit and miss. Also the library doesn’t do assistive software/hardware/stop the spotty kid reading your screen. And there is only one parking bay for dribblers/staggerers/wobblers/wheelies.

Anyway, I digress. Disability costs money, just like ordinary life, but quite a bit more, for many more reasons than I could tell you about here. You’d be bored by the minutiae. That’s if you have read this far.

Problem is, it’s now going to start costing a lot more money, and there will be less money given out.

It works like this. Rent goes up but Housing benefit goes down. Council tax goes up, council tax benefit goes down. There is a bedroom tax, there are no houses to move to and all these things affect disabled people just like normal people. Esther and Iain and David would have you believe that disabled people will be protected – they won’t. Instead they are being forced into workfare. Still I suppose it gets us in the workplace, just as Scope always wanted. And there will be more of us on buses and trains – dribbling and muttering and talking to the voices inside our heads. Won’t that be fun and inspiring for society!

Oh and begging, that’s the other thing there will be more of. We know it’s illegal, but apparently prisons have heating and meals and clean sheets. And why would we be begging? Because the Government have decided to remove DLA, the allowance that allows travel even if it is more expensive, the allowance that pays for the internet and allows internet shopping, the allowance that replaces crockery with melamine, the allowance that pays for social services and private carers to ensure we don’t end up in homes costing £2000 a week or taking all our clothes off in town, the allowance that gets us to work and keeps us in work.

And they are replacing it at much lower financial levels for the same degree of disability. Or put another way, they are taking the money and leaving the disability and its associated costs.

There has been a lot of rhetoric about the fact that most people on DLA have indefinite awards and may not need the level of financial assistance they get. This could be true, technology is a marvellous thing and there have been wonderful advances in medical science. Maybe we should be checking that people haven’t had joint replacements, or died, or been treated with a wonder drug, or a miracle course of physiotherapy that they forgot to mention.

But the Government are not testing the indefinite awards who may be better/worse/the same/dead. No, they are testing primarily the people, who, like me, are tested every one or two years anyway.  The very people, who by both definition and testing, are most likely to be on the correct level of allowance.  Thus leaving the people who they are targeting safe on DLA for another 3 years.

If there are frauds and liars (or just people who are on the wrong levels of benefit) hidden in amongst the great untested, then they have just let out a huge sigh of relief. Meanwhile the proven and regularly tested, genuinely disabled will be put through a system that penalises having aids and adaptations, that expects recovery or adapting to your condition, and that considers being able to stagger 21 metres as not being disabled enough. And reduces their allowance, for many, down to zero.

Apparently they can already put a man on the moon... now how long will it take to insert a brain into a Minister?

Monday 10 September 2012

The Paralympic Prayer

Dear Starter, and those on a podium

Hallowed be thy games

Paralympics come,

They will be run

On the flat as they are in Stoke Mandeville

Give us this day our DLA

And forgive those that deny our existence

As they fail to forgive us for not getting better

For ours is the wheelchair, the hospital trolley

For ever and ever


Wednesday 22 August 2012

ESA50, Stage Two of the Journey to Hysteria.

Guest Blog by Hossylass

Having badly handled stage one through being thoroughly dismayed by the “telephone advice” available from JC and the DWP;

I started what felt like the most dangerous period of my life.

I first sat on a pony aged about 18 months, and after that life was pretty much a mine field. Attracted to the ridiculous, and having as much awareness of danger as a puppy, I have been drowned, run over (quite a bit), mugged, attacked, concussed and landed on my head at speed far too often for it to be a coincidence.
However it was pretty much all my own doing, which is exactly what my ESA 50 ended up as – a dangerous activity that could end in a disaster all of my own making.

This meant I had absolutely no-one to share my sense of ridiculous with. And there were moments. Dozens of them.

Starting from the top, I had the weird feeling that my National insurance number was not my own, so tried to fill in a different one.  I should have left it at that – I clearly can’t even write a series of letters and numbers correctly. My brain said one thing and my hand refused to do its bidding. Total refusal. Naughty hand. Naughty hand responded in the negative and like a sulky child refused to participate further. I asked the other hand, but got the impression that after 45 years of being the unacknowledged spare, it was fucked if it was going to help out now.   Suddenly I knew how left hand felt – I shouldn’t have asked after 45 years of treating it as a lesser being.

So onto the questions.  Can you mobilise 50 metres. Well no, not really. Not at all. I could get lucky, or I could dislocate 50 times in 50 metres, and it’s more likely to be the second.
(Damn you ex-dominant leg, why can’t you behave as well as ex-non-dominant leg? And Oy ex-non-dominant leg, stop getting your own back and following ex-dominants behavioural traits).

Then the next question stumped me by asking could I walk 200 metres. Eh? Do I have to answer this? Obviously not, as I had stated that I couldn’t reliably walk 50 metres… but this is Atos and the DWP, so dutifully I ticked no, resisting the temptation to say that no miracles had taken place in the miniscule time frame between completing the first bit and the second bit.

Who knows, maybe it happens for some people…

So onto question 2. This made me wonder what sort of workplace the writer of this masterpiece worked in. Can you transfer and can you sit/stand or alternate for an hour?   
At this point I had visions of an office of latter day jack-in-the-boxes doing some sort of musical chairs crossed with comedy seats that gave people electric shocks, launching them into the stratosphere when the music stopped, and whilst airborne someone else transferring sneakily onto their vacant chair.

Well there wasn’t an option of “after 5 minutes of sitting can you assume a simian position, knuckles below knee level and collapse onto the floor at the first attempted footfall”. 
Disappointing, but I have to remember that these questions are not aimed at any one person. Well not anyone that occupies my universe.

Memory fails me where we went next, but my personal favourite is “Can you lift one or more arms…” Can someone tell me how many arms we are assumed to have?
Now I know it’s not of this planet – I have really entered a twilight zone. I was tempted to send off a freedom of information request asking just how many people have more than two arms. 
Tell me it’s not just me, tell me that secretly everyone else has “more” arms.  Trust me, I am not being pedantic, this question freaked me out. The temptation to write “I cannot lift any of my arms” was quite overwhelming. For about two days.

It occurred to me that the question was aimed at upper limb amputees, who may have various "arms", and could lift a veritable boxful above their heads – I shall watch closely at the Paralympics to see if multiple arm raising is a recognised sporting discipline.

It then got worse. It then tried to ask me two conflicting questions in one. 
So can I lift 500mls of liquid; possibly but what’s the catch? Well it’s also a pint apparently, which it clearly bloody isn’t. A pint is over 11% heavier. It is, in liquid terms, probably the obese big brother of the 0.5 litre. 
Now considering how hysterical the DWP get if anyone makes a mistake, and remember folks that in future a mistake could cost you £50, I am annoyed. I suppose though I am now entitled to the same 11% margin of error… so I could say that I am a purple galosher all the time, when actually I could be perfectly normal 11% of the time and only a galosher 89% of the time.

And one quick question, can anyone hold a book and turn the pages using only one hand? Or are we talking at the pulpit here, with a King Jim bible lay flat out and begging for a sticky finger to sweep across its sensuous pages. Seeing as people read books in a variety of places, and very rarely are these places such that no support of the book is needed, is this entire question just a way of saying “’Ere, got any office skills? Button pushing and scribble and all that?”

Anyhow, moving swiftly on… The next question is about communicating and the following one about shitting yourself. As the DWP talk shit I am surprised they managed to separate these two criteria.

And again with the next question maybe a little self-examination is needed by the criteria writers. Ask the DWP to do a simple task, or even two, and then sit back and wait…

So take consolation when the next ESA50 drops through your door, that although its life or death, although it is the most important thing you will ever do as a cripple, although it intends to break your balls and make you weep, it is actually a badly written piece of shite, and anything you write at all on that form will only increase its credibility and its worth.

And good luck.

I don’t think that Atos or the DWP will gain much insight from my form, apart from the fact that I am a mardy arsed, foaming at the mouth cripple with a persecution complex, but maybe that and a note from my GP could just be enough to exclude me from games. Fingers crossed eh?

Wednesday 1 August 2012

Clubbed to death……. By a Paralympian (By @hossylass)

Yep it’s that time of year again, and even worse, it’s that time of four years. Paralympic year.
Now I love the Paralympics. I love Paralympians. They are my kind of people. I am a bit jealous though, you know, just a tiny bit. About the size of Jupiter jealous.
I’m not jealous about their success, far from it. I shall be holding my breath in the swimming, twitching and clicking through the dressage, and probably shitting myself during the weightlifting. Yep, I get that involved.
I shall weep at every win, and weep at the losses, sob at the medal ceremonies and dissolve completely at the National Anthem. It’s going to be a right snot-fest.
So why am I jealous? To be honest I don’t think I am. I am just a bit wistful. I want that opportunity, I want to be in that huge competition, I want to be a part of it, but it’s never going to happen as I have, quite simply, got the wrong disability.
It’s wrong for society, its wrong for the Paralympics and it’s wrong for me. I need a disability I can overcome. I need a disability that challenges me to find new and adaptive ways to overcome it. I need a disability that requires tenacity and guts, but is ultimately a massive inconvenience.
But like the majority of disabled people, I got a disability that isn’t.
It isn’t a Paralympian disability. It’s a crappy hiding-behind-closed-curtains disability. Is a fucking lie-down-in-a-darkened-room disability. It’s not even a disability. It’s a gang of stuff going wrong, refusing to behave, ASBO disability.
ASBO disability is a condition, it’s a syndrome, and it’s a collection of pain and exhaustion. Its fear and random, and OMG-is-that-ASBO-or-something-else rush me to A&E stuff. It’s Heartsink Doctor, its rogered-up-the-arse-by-an-elephant, it’s pathetic.
And it ain’t Paralympian.
ASBO disability for me is EDS, and FMS, and CFS, and sleep psychosis. It means that sometimes ASBO disability behaves and lets me concentrate on the ordinary stuff, like my eczema, or reading a book, but in the main ASBO disability is there, playing up, being naughty, demanding attention, making me cry.
But ASBO disability exists, and it exists for most disabled people. It’s what makes sick people disabled and disabled people sick. ASBO disability can mean you get a sickness benefit and a disability benefit, or neither, or one but not the other.
ASBO disability is currently turning the media into a whirlpool of sharks, 99% gristle and teeth, 1% intelligence. And you can’t educate gristle – God knows I have tried. We all have. We have stared in disbelief at Heartsink Doctor, realising that yet again most of a consultation will be taken up in a tedious explanation of ASBO disability. We have been left speechless in the face of ignorance from friends, family and neighbours. We have given up by the time it gets to Social Services. ASBO disability wins because we just can’t force ourselves to describe it yet again.
And because of this, because we are so exhausted by our ASBO’s, because people can’t understand it instantly, we could easily lose the battle of hearts and minds.
We may not look very disabled, and we may not look very sick. We won’t get into the Paralympics, unless they invent some very new and special events involving vomit, pain and shaking with exhaustion.
And that is why all the people with ASBO disabilities are about to be clubbed to death by the Paralympians. Or more accurately, clubbed to death by the Paralympics.
Paralympics have a classification system. It’s rough; I’ve tried to fit into it and failed. But it can neatly grade a person into a group, each group being of the same level of loss of function, impairment or absence. Use whichever language you chose. But it’s there.  A quantifiable scale.
ASBO disability refuses to fit on this scale, but it won’t stop Governments and the media using this scale as the only scale.
“Disabled? No you’re not, because look at all these marvellous people who are REALLY disabled, and look what they can do”.
We’ve got weeks of this. Weeks of being told we are not disabled. Weeks of being told that Paralympians are “inspiring” and “genuinely” disabled.
Weeks of being told that we are not. Or a lifetime. But the next few weeks more so.
I can sense the clubs descending already.
Form a Turtle, man the defences, and turn up the heat on the boiling oil pan – we have a battle ahead. Let’s just hope that our friends in the Paralympics will support us as much as we will be supporting them.