JOBCENTRE WRAG-TIME a poem

I went to the local Jobcentre

With painkillers, stick and bag

I had to go, fearing sanctions

Cos I've gone and been put in the "WRAG."

It makes me feel poorly on buses

But with hypos I mustn't drive,

So I stumbled in all of a-tremble,

And barely a quarter alive.

It took me all my precious "spoons"

To balance and to breathe,

I had to watch the pavement

As it starts to shift and seethe.

My 80 year old mother came

To help me open doors

Which invariably seem to stick

Defying gravity's laws.

My appointment was half past eleven,

Though I hadn't slept night after night.

My legs felt as wobbly as rubber

I was sickened by motion and light.

But the Jobcentre seemed rather quiet

With everyone there in their place,

No loud noises were blorting to hurt me

Which was abso-bloomin-lutely ace.

A lass who was wearing a label

Which I guess spelled out her name

Started asking me what was my business

And the reason that I came?

I explained I'm in the “WRAG” group

And I had to meet the girl

Who's my “Personal Adviser”

Who I'll call, for rhyme's sake, “Shirl.”

She looked me up, she looked me down,

She showed me to a chair,

Where in pain I tried to balance

Near to others who were there.

Some were reading adverts,

While others filled in forms,

Some jiggled kids in pushchairs

While others stifled yawns.

But everyone seemed friendly,

Efficient, polite and calm,

And as I got my breath back

One young woman touched my arm.

She said my name and greeted me

And helped me cross the carpet,

Pulled out a chair to help me

Cos by now my “spoons” had scarpered!

She reassured me from the off

She wasn't there to press me,

ATOS had done what ATOS do,

Here no one would undress me

Or frown and say “M.E.? What's that?”

You look fit as a fiddle!”

She listened and she understood

(Not influenced by Rod Liddle!)

I didn't wear my dog-collar,

So I was a bit astounded,

She knew the kind of help I'd need,

Advice was wise and grounded.

She tapped on her computer screen

To calculate & compare,

If work from home might pay at all

What hours, what skills to share.

She knew from my work history

I wasn't one for shirking,

She knew that were I well enough

I'd much rather be working.

She totted up the hours

I could work or volunteer,

On top of what I manage now,

If better health were here.

She built on what my skills are

To make helpful suggestions,

She let me pace things as we talked

And answered all my questions

She learned about my brainfog

And saw it one-to-one,

She's the face among the faceless,

I was really glad I'd gone!

I asked if I had to see her

Every month from here on in,

She said it would not be needed,

(My knees must've met my chin!)

I could call her number any time

For any advice at all,

It should be another year or more

Till my next medical call.

She was honest about W.R.B.

And all the uncertain changes,

She well understood her clients' fears

And the future's scary dangers,

So clued up and supportive,

She went out of her way

To fetch me a pack to make a claim

If needed, for DLA.

Since then I've heard two other friends

At different JCPs,

Have also had this kind of help

In different degrees.

Although it took days to recover,

From this trip to the “bowels of hell”,

I consider myself very fortunate

I've a positive tale to tell.

Before you say, “yes but, no but,

ESA's just for a year.”

I must meet that bridge when I come to it,

I'm thankful for now and here.

For now, I was saved an unequal fight

To be put in the group for “support”,

Not terminal ill, not yet a corpse,

I guess I've been put where I ought.

I know the harsh rules of D.W.P.

Won't find me a miracle cure,

With their strict time-limitation,

But the future is seldom sure!

We can only live in the moment,

And fight on for those with no voice,

Play fair even when we've been diddled,

Or grow bitter and bolshy by choice.

Back at home I was soon reminded,

How true were the things we'd discussed,

How far I am from “fit for work”

The adrenalin soon repercussed.

I slept till the daylight was dying,

As body and brain disengages

With the payback from that short journey

I just couldn't function for ages.

But at least one Jobcentre employee,

Understands disability more,

Has more now of M.E. awareness,

It won't stop me fighting injustice,

With others whom ATOS have harmed,

But I went to the WRAG, and I learned some,

As with all things, forewarned is forearmed.

There's still everything to play for, Lord Freud. We'll have you eat your false promises on toast!

Disabled people everywhere still reeling at the result in the Lords tonight.

Result: Contents (supporting Lady Tanni Grey-Thompson's amendment calling for a pause to the change of DLA to PIP): 213
Not Contents (voting with the Government) 229

Baroness Grey-Thompson refused to back down in the face of Lord Freud's bullying and haranguing, and took it to a vote. While that vote was narrowly lost, not least because of the Lib Dems (only two of them had the backbone, compassion and wisdom to vote against the Tories' speeding train of crushing Welfare Reform), the voice of the disabled, now focused through the breathtaking sacrificial efforts of all involved in the "Spartacus Report" has started to be heard. Started to rock the belligerent boat that is the Government's plan for the sick. The blundering amoral machinations of Lord Freud can temporarily muffle those clear, brave voices. We've seen that tonight.

But we will never now lie down and be silenced.
Now we know the score.
We can gradually, spoonily, make Lord Freud eat every single one of those ingratiating  false promises he made in order to "win" and keep us quiet tonight. As if!
For we are Spartacus.
We have one another and we are one another's strength.
We have the moral high ground the Government has long given away in its scramble to scratch its own back and feather its own grubby nest.

We won't give in.
We go on with gratitude and thankfulness to those who deserve it.
From our sickbeds and our forgotten corners, we can move forward in hope and determination to be exactly who we need to be. With fluctuating conditions, mental health issues, deteriorating and terminal illness, every type of disability and health challenge.

No. We might not fit in your assessment tick-boxes. We might not be conveniently "fit for work".
But we are here. One way or another, we won't be going away just because it makes you uncomfortable in your ivory tower!

There is still everything to play for! We are Spartacus, and we aren't about to roll over and give in. Disability means living with challenges every day, and the Welfare Reform Bill is yet another one to build up our wobbly muscles on!

We've so much to build on, now. So many new friends and champions.
Onwards and upwards, spoonie Spartaci! xxx

Today's the day! So will the Lords do the only right thing?

So today's the day. The last chance for the Lords to vote for an amendment to call for a pause to the proposed changes to DLA (Disability Living Allowance). If not it will be seamlessly morphed into the unfit for purpose PIP (no, not the dodgy boob implants, the equally dodgy Personal Independence Payment!) that may well make unbearable and unlivable the lives of the most vulnerable disabled citizens in our country. They were promised they would never be betrayed. Through the tireless efforts of the disabled through the "Responsible Reform" Report, a new amendment has been tabled.

Again this is the eleventh hour. Again the disabled are fighting for their lives.

With M.E., plus Type 1 Diabetes with frequent severe and unannounced hypos, it has taken all my strength and last shred of dignity just to be transferred from IB to ESA. Even though incompetent and duplicitous ATOS have now plopped me unceremoniously into the incorrect WRAG (Work Related Activity Group), I'm pathetically relieved and thankful they deemed me of limited capability for work at all, given the current level of wrong decisions going to appeal. When I turn up crashed, brainfogged and crippled in my dogcollar at the Jobcentre again, we'll see exactly where their areas of expertise lie.

I have never applied for DLA (Disability Living Allowance) myself, just because, although I have long periods when I seem to fit its most stringent criteria, I find it hard enough to claim the ESA I need to survive, without having yet another ongoing claim where officials can look on me as if I have crawled out from under a stone. If I can manage, I will. The criteria for qualification for PIP were released yesterday here.

I am often like Katy in Case Study 1, but living alone. In that scenario I would qualify for PIP with "enhanced rate Daily Living component" and "enhanced rate Mobility component". At other periods my health may mean I more resemble Rachel in Case Study 2 who qualifies for nothing. Sorry my fluctuating serious lifelong illnesses are inconvenient enough not to fit the tick boxes. Sorry my body refuses to a)recover or b) die for your convenience! No wonder I daren't apply!

The whole PIP assessment thresholds leave you confused and despairing at the sheer lack of coherence and understanding of disability. There is so much emphasis on the upper body that you have to ask yourself if the DWP think all disabled people are mermaids, without legs or crotch.

Ironically, if I can go back to work, the fluctuating and lifelong conditions I have mean I might probably need to claim DLA for extra transport and mobility costs, etc. One day, any one of us might.

So here's the email I've just sent to about 90 Crossbench peers, following a flurry of tweets last night.

If the Government don't tamper with any more balls, sanity and victory may be almost within our grasp!

Email to Crossbench peers:

This morning, the following amendment has been tabled :

Clause 80 - Amendment 50E
BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON

Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.

On behalf of all genuinely sick and disabled people, their families and carers , may I ask you to make it an urgent priority today to vote for this vital amendment to the Welfare Reform Bill?

Following the wise, compassionate and reasoned “Responsible Reform” (also known as the Spartacus Report), the rest of society is starting to grasp the deeply flawed nature of the proposed reforms as they stand. Without a pause today, devastating and unjust changes will be rushed into law. The amendment calls for a pause to reconsider and amend before it is too late. 

We all understand how essential is giving disabled citizens a life that is not just barely tolerable, but which gives them a chance to thrive and enable them to use all their gifts and talents to enrich society, while having quality of life themselves with all their added costs and difficulties in accessing what others take for granted. The Welfare Reform Bill as it stands, without serious amendments, will cost the country so much more in the long run than has been mendaciously suggested by some.

I respectfully beg you to help by doing your part to understand the real issues and vote for what is right.

Thank you so much for your time and attention,

yours sincerely,

etc

Sent to: andrew@amawsonpartnerships.com,
alastair@aberdares.co.uk,
adebowalev@parliament.uk,
afsharh@parliament.uk,
michael.allenby@btinternet.com,
altond@parliament.uk,
amosv@parliament.uk,
armstrongr@parliament.uk,
best@parliament.uk,
p.bew@qub.ac.uk,
abhatia@casley.co.uk,
bilimoria@parliament.uk,
birtj@parliament.uk,
BOOTHROYD@parliament.uk,
brabazoni@parliament.uk,
bramallen@parliament.uk,
lady.briggs@googlemail.com,
butlerslosse@parliament.uk,
campbelljs@parliament.uk,
carswellr@parliament.uk,
deechr@parliament.uk,
dafydd.elis-thomas@wales.gov.uk,
errollm@parliament.uk,
finlayi@parliament.uk,
freybergv@parliament.uk,
fritchiei@parliament.uk,
greenfieldsuuk,
greengrosss@parliament.uk,
greenwaya@parliament.uk,
greythompsont@parliament.uk,
crlguthrie@gmail.com,
halla@parliament.uk,
harriesr@parliament.uk,
hastingsm@parliament.uk,
haymanh@parliament.uk,
hennessyp@parliament.uk,
hoffmannl@parliament.uk,
HoggS@parliament.uk,
HOPEJAD@parliament.uk,
howarthv@parliament.uk,
howee@parliament.uk,
hyltonr@parliament.uk,
ingep@parliament.uk,
janvrinr@parliament.uk,
jaymh@parliament.uk,
listowelf@parliament.uk,
LLOYDAJ@parliament.uk,
kakkara@parliament.uk,
lowc@parliament.uk,
LUCER@parliament.uk,
lord.mackay@scotcourts.gov.uk,
mancej@parliament.uk,
McFarlanej@parliament.uk,
marm@parliament.uk,
martinm@parliament.uk,
mawsona@parliament.uk,
meachermc@parliament.uk,
mckeem@parliament.uk,
murphyel@parliament.uk,
neubergerj@parliament.uk,
nichollsd@parliament.uk,
northbournec@parliament.uk,
oloann@parliament.uk,
oneillm@parliament.uk,
ouseleyh@parliament.uk,
oxburghe@parliament.uk,
palmerad@parliament.uk,
patel_naren@hotmail.com,
pattenc@parliament.uk,
prasharu@parliament.uk,
ramsbothamd@parliament.uk,
richardsonk@parliament.uk,
rookerj@parliament.uk,
roperj@parliament.uk,
ROSSLYN@parliament.uk,
SaltounF@parliament.uk,
sandwichj@parliament.uk,
skidelskyr@parliament.uk,
dalrymplej@parliament.uk,
SternVH@parliament.uk,
dennis@hdstevenson.co.uk,
stirrupg@parliament.uk,
sutherlands@parliament.uk,
tanlaws@parliament.uk,
taylorjdb@parliament.uk,
tombsf@parliament.uk,
walkermjd@parliament.uk,
walpolerh@parliament.uk,
warnockh@parliament.uk,
watsonm@parliament.uk 

Brain-dead is a tragedy. Compassion-dead is a "lifestyle choice"

Sorry brain fog from yesterday's info meltdown overload reigns today. I will be mostly cutting and pasting two emails I managed to send yesterday to avoid complete incoherence today!

It was exhausting emotionally, but also exhilarating to watch the passionate, compassionate arguments from peers like Lord N Patel, Baroness Meacher, Lord McKenzie and others who last night voted to defeat three especially vicious aspects of the Coalition government's Welfare Reform Bill. The "Spartacus Report" and its tenacious disabled champions were instrumental in fighting for what's morally right over what is mean and mendacious.

It was dispiriting to find that the BBC was still obdurate in refusing to mention the Spartacus Report in any major bulletin, and its failure to report the government defeats in the Lords in more than a dismissive side note, way down the running order on News at Ten, with obvious spin to scupper the impact.

Even more devastating to hear that Lord Freud had tried "dirty tricks" tactics to override the earlier defeats in an unprecedented late night vote. And that he actually got away with it.

I managed two emails while adrenalin was driving my indignation last evening. Spoons have to be expended while the iron is hot, sometimes, even if it leads to crash and post exertional payback. Many noble disabled campaigners like Sue Marsh, Kaliya Franklin and many others, have fought altruistically for us all, and also made their own conditions worse in the process for the common good. They inspire us all.

I noted that Baroness Benjamin voted with the government, even after I lobbied her politely about ESA last month and the House of Lords sent me a postcard to say she had noted my letter. My fond memories of her on "Play School" are a bit tainted now, but never mind. She was on the losing side!

The first transcript here is a copy of a second email I have sent to my MP Kevin Barron, following the response I got on sending him a copy of the Spartacus Report on Monday, when he emailed me to say:

I have read the report this morning and I will do all I can to let the Government know of its conclusions.

Yours

Kevin Barron MP

I hoped to encourage him to build on the result of the Lords vote and maintain this impetus when the Bill comes back to the Commons:

Dear Mr Barron,

 

Thank you for your email reply yesterday and for your promise to do all you can to let the government know of its conclusions.

 

In line with the research and conclusions in the Responsible Reform Report, genuinely disabled citizens, including many of your own constituents here in Rother Valley, have been relieved and encouraged by today’s defeat of the government in the House of Lords in three votes on various key amendments: namely

 

-to retain automatic eligibility for ESA for young disabled people who are unable to work

-to impose a two year time limit for ESA claimants, overriding the government’s proposal that claimants be reassessed after 12 months

-to exempt cancer patients from the proposed ESA limit

 

I hope you will see, from the wise, compassionate and reasonable arguments raised today in the Lords against the demeaning and immoral nature of the current proposals for Welfare Reform, that it is vital such remarkable victories of civilised action are upheld and strengthened when they come back to the Commons. I look forward to seeing your continued support at that stage if you are able.

 

Thank you again for your support and help for the most vulnerable in our society,

 

your sincerely, etc

Then, to Chris Patten, BBC Chairman, to express concern at lack of coverage:

Dear Mr Patten,

 

Many people on the social networks this evening have been pointing out the obvious pro-Coalition bias of the ‘BBC News at Ten’ coverage of the Welfare Reform Bill currently being voted on in the House of Lords. It seemed pretty blatant, after the government suffered a triple defeat on amendments to protect young disabled people, cancer sufferers and to extend the period of time limited ESA, that the news item was being deliberately pushed down the order in order to “sink” the bad news. It was clear that papers were being shuffled and Huw Edwards was being fed questions to bias the reportage. Instead of the actual newsworthy defeat, viewers were treated to a smoke and mirrors whitewash making the whole thing seem like an embarrassing little blip. Somehow the piece was “spun” to blame the deficit on the disabled people affected, then to imply such a vote shows a need for reform of the House of Lords!

 

Exasperating as this is, it is a bias we see from the Corporation most of the time, and have reluctantly learned at least to tolerate. What is more chilling is the way the BBC News has deliberately failed to give any coverage to the “Responsible Reform” Report (popularly known as the “Spartacus Report”) released this week, revealing the Coalition’s mendacious misleading of the public on the facts of the Welfare Reform Bill. Why is this? The inflated license fee we pay for an ever diminishing handful of watchable “flagship” dramas and HD documentaries should surely buy us the basic right to expect coverage of issues the rest of the country can’t ignore? Just because some of these come in the wrong party colours, don’t toe the party line, or reveal the outright lies being fed to voters, surely this is hardly a valid reason for pretending they don’t exist in the rarefied air of BBC current affairs?

 

 

with thanks,

yours sincerely etc

 

One battle's sort of won. But the war's very far from over.

 

What we can never achieve alone, we can do together. Cos we are disabled, and we are Spartacus!

Spartacus Report gives disabled people a voice at the eleventh hour

#SPARTACUSREPORT Press Release


#SPARTACUS REPORT into proposed Disability Reform


Twibbon to support #Spartacusreport


The voices of those seeking to tip the genuinely sick over the precipice and down into the pit of contempt where human compassion and reason cannot penetrate, reached a deafening pitch long ago. Voices of politicians, tabloids, journalists, the media, even some less perceptive or cannily duped members of the public, clamoured to misidentify the 0.5% of benefit cheats with the 99.5% who have done nothing wrong but fall prey to illnesses that come as part and parcel with inhabiting the human body. These unfounded, murderous opinions have taken over the airwaves like white noise. Too long the truth about disability reform, told from the inside by disabled people themselves, has been drowned out.

But we are still here. With our complicated, messy lives, inevitably filled with fluctuating agonies, or mental illness, invisible suffering, lifelong and degenerative diseases. Plus our added struggles to access transport, public facilities, our careers, our friends and families, housing, mobility. We are still here, and the Spartacus Report, a clear, reasonable, passionate voice for all disabled people, is now here too.

At long last, at the eleventh hour, days before the final votes drag the Welfare Reform Bill, blindfolded, gagged and weeping at its own unfitness for purpose, through Parliament, we have found our voice. The Spartacus Report, funded, tweeted, shared, compiled, publicised, emailed, sent, advocated entirely by disabled people with the few energy "spoons" and fragments of healthy moments they have. Launched yesterday by the concerted efforts of a huge section of disabled voters with access to social media. Now backed by charities, celebrities, councillors, medics, along with so many disabled people and their carers and supporters who know this desperately needed Spartacus Report speaks for them as nothing else has been allowed to do in the current climate.

If time and spoons are scarce, please at least read and share the shorter press release on the link above, if it speaks for you too. Wear the publicity twibbon on your profile, as I am proud to do. If you can, share the full report to all who will listen, to help them hear the truth. It is entirely possible that the person you reach with the report may never have heard the full truth before. The government certainly hopes so. They have pulled out every stop to make sure the facts uncovered here about widespread opposition to their WRB proposals never come to light.

Or if, like I might once have done, you cockily think you will never need such a voice, because you are well, working hard, thriving and with a level playing field before you, think again. Disability is no respecter of persons. Neither is the system being put in place, dismantled, tinkered with and made a monster of; if the WRB goes ahead, we will all be at the mercy of its vicious disregard for human need in the years to come.

Spartacus was a famous leader in Roman times who headed an uprising of oppressed people, fighting for their freedom against a slave-owning oligarchy. We disabled people of the 21st century in the UK have no desire for violence, hatred, war, vitriol or physical weapons. Personally, I believe our armoury lies in reasoned argument, shared hope and encouragement, patience, resilience, persistence, humour, a holding onto the truth and a call to the deepest wells of the human spirit, that no regime relying on greed or propaganda can ever wholly crush.

I support the spirited, truthful voice of the Spartacus Report.
If you do too, please don't hesitate to show the world you too are breaking the silence with a voice that can no longer be ignored.

Blessings to you and yours.

Ed Miliband's Happy New Year to the Hardest Hit

Now Ed Miliband gets tough with onslaught against "evil" of benefits scroungers

Happy New Year to the genuinely sick, disabled and hardest hit in society.

Labour joins ConDem's vicious rhetoric of recent months, tarring everyone genuinely unable to work, or unemployed through lack of jobs in the current economic cuts, with the same stigmatising brush as the 0.5% of claimants who aren't genuine.

Why don't they root out this tiny minority once and for all? So the genuine, struggling 99.5% of citizens can be freed from vitriol and opprobrium they have never deserved?

Either this article outlines a parroted-for-votes, tabloid-licking ignorant whine that shows no basic understanding of issues we expect from the politicians we all elect, or it is sinister in the extreme. This is not even an intelligent ploy to win Labour votes!

Evil or plain stupid? You can't have it both ways.

Many today are exasperated beyond measure, from every shade of the political spectrum. The "facts" here are hyped half-truths and downright lies. The real policies to move us forward are conspicuous by their absence.

What a cruel joke to remember how Kaliya Franklin (@Bendygirl) used all her strength, persistence and perspicacity to show Miliband the difference between "scroungers" and the genuinely disabled and chronically or fluctuatingly sick. Watch again, incredulous as you may be after today's U-Turn from Ed Miliband's moral compass here 

Kaliya Franklin, from her wheelchair at the 2011 Labour Party Conference last September, won the argument with Miliband so recently, he cannot possibly claim to have forgotten his pledges and promises in the wake of their meeting so soon. Shame on him.

Here he blithely regales us with his New Year Message for 2012:

"When politicians shrug their shoulders in the face of other people’s despair, they are not just abdicating responsibility, they are making clear choices. That is as true now as it was in the Great Depression during the 1930s." Politics can make a difference: Ed Miliband New Year Message

With the quote above, he surely writes his own political epitaph.

With no difference now discernible between the major parties' lines about the most vulnerable in society, we must look elsewhere for compassion to carry us through what we can be sure are desperate days. Days that put me in mind of words ex-Laureate Ted Hughes wrote in his poem 'November', still true about the trials faced by so many this January.

Only Hughes was just capturing the merciless weather. Animals caught by poachers or gamekeepers hung helpless but stoical on a fence. This is hate treatment meted out to vulnerable, ordinary human beings with no redress or resources to fight back, in many cases. But the tide has to turn one day.


In the drilling rain. Some still had their shape,
Had their pride with it; hung, chins on chests,
Patient to outwait these worst days that beat
Their crowns bare and dripped from their feet.

Shuttlecocks and Shattering Shocks

BBC News: Is the new disabled work benefit working?

I don't hold out much hope for this programme tonight. I don't get a good feeling from this BBC preamble by Helen Grady.

An M.E. sufferer who is "one of the country's top wheelchair badminton players" and "a regular at live action role-play festivals"? Some mistake in the report? Some mistake in the diagnosis? I don't pretend to know.

Perhaps it's just my ignorance. I thought being top at badminton must mean you can do more than apply yourself in "short bursts". I know shuttlecocks are light pieces of equipment. Badminton isn't squash. But even from when I played it very occasionally years ago, before M.E.completely shut down my neuro-immune system, I know it's one heck of an energetic game. Far beyond anything I could manage now. Is it just because I'm now 50, having suffered M.E. in remitting-relapsing deteriorating pattern since at least my 20s, and the M.E. sufferer in the above-linked article is still only 27?

I sat talking to visitors today. Sat slumped, propping my head to help my neck to support it so as not to appear rude or bored. Two low-maintenance dear old friends this morning who did most of the talking. One dear old friend this afternoon, to whom I showed a slide show of photos on the laptop as we chewed over some family history brick walls, a shared interest that brought us together. My Mum even stayed long enough to make the tea for us to save me some extra "spoons".

Now I am utterly crashed. Head spinning. Throat hurting and hardly any voice left. Wrists too sore to type for long. Eyes blurred. Unsteady. Ears singing. Heart palpitating. Feverish and shivery. Nausea and pain making eating tea difficult. Forgetting my words. Exhausted to point I need to sink down right here on the carpet, if I didn't risk not being able to get up again. Hot and cold by turns because my autonomic nervous system is completely up the spout.

Even without badminton or any outing today, many things with M.E. are way out of bounds now to me. Co-ordination, concentration and strength to drive, for one (though diabetes type 1 with no hypo warnings rules that out in any case). Badminton or any strenuous sport, for another. Self-propelling myself in a wheelchair for yet another. Even carrying and using my walking stick is making my hands, wrists, arms, shoulders and chest unbearably sore this last week.

A dear family member, also diagnosed with M.E. much younger than me, who got treatment right away, does drive now, does some teaching and plays some tennis and does some cycling. So I know it's possible, in remission. But she is always aware of her limitations. At her worst, she has the huge frustration of knowing she can't keep it up, either safely, or at all.

I have to lie down, now. I can't say more about this today. I refuse to whine. I won't criticise. But I fear the backlash here, yet again, from people convinced that with full-blown M.E. we are all fit for the Olympics and driving from Land's End to John O'Groats on a regular basis. We are patently not. Not all of us. That's all I know. Am I living on a parallel planet? ATOS are sponsors of the Paralympics. Is this propaganda for them?

No doubt I need to shut up, rest and listen to the programme with an open mind, if  possible, even if with a pretty foggy brain!

I doubt after my little goals today I'll still have the concentration to listen reliably. Neither the concentration, the stamina or the heart. Not in Christmas week. Not when the tiniest unexpected, even delightful moment, can soak up the last bit of energy and health at my fingertips. Not while we're still reeling at the news that renowned and tireless diability rights campaigner Sue Marsh (if only poor Sue was really able to do all she does and not be made disablingly sick and tired!) joins the legion of genuinely very sick and disabled refused help: Guardian: Comment is Free: Sue Marsh: No disability living allowance for me. Nowhere to turn for many more

The description of tonight's programme runs:-Can You Touch Your Toes, presented by Anita Anand, will be broadcast on BBC Radio 4 at 20:00 GMT on Tuesday 20 December.

If I manage to listen to "Can You Touch Your Toes" with eyes shut and brain engaged, I'll try to blog about it later or maybe tomorrow to open a forum here for any reactions.

I began by saying I don't hold out much hope. But I still do. I always will. Or that really would be the end of the road.

Footnote: Having listened now, I really haven't much inclination to add to my comments above. Spoons are precious to all of us. My experience of M.E.bears little resemblance to what was implied on the programme. I can't speak for others.  That ATOS and the WCA is deeply flawed was clearly demonstrated, though. I'm off to practise for enforced work as a draught excluder. Night all. Tomorrow's another day.

A voice crying in the wilderness?

The Welfare Reform Bill is now in the final stages of being read and voted through the House of Lords.

Yesterday came the dire news that under Universal Credit, all but the most severely disabled children's money will be halved. Yes - disabled children's means of support snatched away to pay for greedy bankers' mistakes. It is nearly Christmas. But tragically this isn't Dickens' "A Christmas Carol" we're reading in front of cosy fires. It's the reality of living in the UK.

This comes as we're still reeling from the announcement that cancer patients undergoing chemo are to face the shambolic humiliating pantomime of the Work Capability Assessment, that is proving so deeply flawed.

In more positive news, I got excited to see M.E. had crept into the midst of top news stories today. It was about BMJ Open's research here: BMJ Open: Unidentified CFS/ME is a major cause of school absence . The item on BBC Breakfast Time this morning can be watched here: BBC Breakfast : Chronic Fatigue Syndrome 'affects one in 100 pupils'

Can the Government continue to ignore and downplay M.E. after this? The cynic in me says of course they can. And will. The believer and fighter in me says, we have to move forward in hope and thankfulness. We can still light a candle in the dark.

Not wholly surprisingly, the impression viewers were left with is that M.E. is identical to the umbrella term "chronic fatigue symdrome"; and the mistaken myth that the disease myalgic encephalomyelitis can be cured in the shake of  lamb's tail by a spot of CBT and GET before being fully diagnosed.

Meanwhile, it's taken most of my spoons to get through the simplest tasks in the lead-up to Christmas. Last week I "paced" myself through sending, emailing, addressing, personalising my usual batch of around 200 cards. That put me out for the count for days afterwards.

On Saturday, with lots of support from my mum, I managed to put up a tiny nativity set on my window ledge and decorate our small tree that sits on the floor where I don't have to stretch much. Trailed tinsel round a few surfaces. Stuck the cards along the closed piano lid. Pinned "Peace on Earth" banner to one wall. Placed a few candles on the mantelpiece. That was all I could manage, and plenty to make the room look ready for the quiet time chronic sickness demands I spend. Don't get me wrong. Jesus' birthday will be filled with joy for me and mine just the same!

What energy and health "spoons" I've got left I used to cajole my addled braincells into writing a letter and an email to try and do my little bit to challenge the worst Scroogeliness of the Government.

First was a letter to Baroness Benjamin, Lib Dem peer in the House of Lords. Well, I used to watch her on BBC's children's programme 'Play School' playing with Hamble, Jemima and Big and Little Ted. Maybe she owes us one? Seriously, she has a heart for children. I wrote to ask her to oppose the proposed one year time-limiting of ESA (Employment and Support Allowance), which will impact on children within affected families too.

The second was an email to David Cameron, the PM. The Commons, not least his partner in crime Nick Clegg,  have been giving him a rough ride this week over his veto on the EU. Yesterday I did my part to encourage him to reconsider this halving of benefits to the families of disabled children. Neither issue may affect me directly, you may say. But, "we're all in this together" is true in my mind, even if David Cameron only mouths it when it suits. In the words of the Manic Street Preachers: "If you tolerate this, your children will be next."

Now we know this to be true, how can we stay silent?

..........................................................................................................

Letter sent to Baroness Benjamin (Lady Floella Benjamin) via the House of Lords:

Dear Lady Benjamin,

Time-limited Employment and Support Allowance: Welfare Reform Bill Report Stage & Third Reading

I am writing to ask if you would consider voting against time-limited Employment and Support Allowance (ESA)? The proposal is to limit this to just one year, and can still be opposed, I believe, in the coming Welfare Reform Bill Report Stage and Third Reading.

People with serious illnesses and disabilities are in despair at the prospect of being left with no income, scarcely able to function at home most days, let alone work. While I live alone, I feel I have to ask your help for others, including young people, who will be adversely affected by losing means tested ESA after twelve months if they live with somebody who happens to be fortunate enough to have an income at that time.

I am a Methodist Minister, ex-junior school teacher, formerly the first English Methodist Mission Partner to Sucre, Bolivia. In 2007 I was forced to retire from my calling and profession by the neurological auto-immune illness Myalgic Encephalomyelitis, against which I had already been battling for over a decade since contracting giardiasis working in South America. If ESA were to be limited to one year, it would imply some miraculous cure is envisaged by the Government within that year. 
 
Like me, many disabled people are unable to work, even were jobs actually available, through no fault or “lifestyle choice” of their own. 
 
People with serious, lifelong, degenerative or fluctuating relapsing-remitting conditions will all be affected by this, children, young people and adults alike. People with Multiple Sclerosis, Myalgic Encephalomyelitis, some forms of Cancer, Parkinson’s Disease, Cardiovascular, Renal & Pulmonary Diseases, Mental Illness and many others will be left cut adrift from all hope and help, in spite of much empty rhetoric we hear to the contrary from Lord Freud and others. Meanwhile the media increasingly demonises all sick and disabled people and paints them with the same brush as benefit cheats and scroungers.

The one year time limit proposed for ESA is surely unfair and at best mystifying to right-thinking citizens? Where are the jobs or cures that make it reasonable or humane?

I know that at your Liberal Democrat conference earlier in the year, members voted overwhelmingly to oppose any such arbitrary ESA time limit. I respectfully plead with you, on behalf of all the genuinely long-term sick who are now living in dread of this, and so many other crushing blows from the Welfare Reform Bill, that you stand up for the most vulnerable members of society.

Many thanks for your understanding,
yours sincerely,
etc

................................................................................................................................


Email to David Cameron about cuts halving benefit to disabled children:


Concerning benefits for families with disabled children


Dear Prime Minister,

I am concerned about the 50% cut to benefits for many low income families with disabled children which was, to the horror of all right thinking citizens, voted through the Lords today.

Families with disabled children incur higher hidden costs, as I'm certain you know. These costs are worryingly high in wintertime. Many families with disabled children are forced to keep their heating on when mobility is impossible.

Any cuts to these household budgets already reined back to the bone are frankly inhumane. Your Government is proposing that within the Universal Credit, Disability Additions will be 50% lower than their current rate. £1400 less per year is more than these families can cope with. Why would you target unnecessary cuts at the most vulnerable disabled children?

I hope this Christmas you can find it in your heart to relent at the brink of this immoral and deadly mistake.
Yours sincerely etc

The tragedy behind the casual cruelty of the WRB: R.I.P. Mark and Helen Mullins

The magnificent Sue Marsh of  Diary of a Benefit Scrounger was on TV tonight. Sue explained in her eloquent, passionate words exactly why it is vital that people hear the real human needs masked by the current tide of disability hate kindled by the BBC, the tabloids and broadsheets and by politicians across the board. Why the Welfare Reform Bill being bulldozed through by the Coalition Government is no more "fit for purpose" than so many genuinely sick and disabled citizens are, in spite of the flawed processes of ATOS and the DWP, realistically "fit for work".

Nobody can see what it might have cost Sue in health even to make it to the studio. Or the effect her efforts might have had on her own health afterwards.

Sue Marsh: Is Everyone Entitled to Welfare? on 4thought TV 

I left a comment about Sue's inspirational segment on "Is Everyone Entitled to Welfare" tonight (8.55pm Channel 4 8th November 2011)  on the 4Thought TV site:

"Sue summed up so well the real, urgent plight of those who are genuinely disabled and totally dependent on benefits for day to day survival. 1 minute 44 seconds seems short airtime to counterbalance the media's increasing bias against welfare recipients, but Sue made every second count, so thank you so much. The suicides in Bedworth announced today are a tragic illustration of the chilling truth behind Sue's words."

The suicides I refer to are unlikely to make the national news.* It doesn't suit the propaganda machine to reveal that a good, conscientious, loving couple like Helen and Mark Mullins from Bedworth near Coventry, felt they would rather die side by side then continue to starve and freeze. Or to be classed and branded on national TV as scroungers and pitiable parasites.

The propagandists would like you to believe most benefit claimants drive Bentleys, sail yachts, have houses abroad, swing the lead, or act like wheelchair using Andy to a duped carer like Lou in a warped sketch from some private "Little Britain".

Mark and Helen didn't even have a fridge or freezer. They made the handouts from a soup kitchen, to which they weekly trudged six miles on foot, last them all week, warmed up on a one ring stove. 

Bedworth 'suicide pact' couple found lying side-by-side 


Helen was told she could not work by Job Centre Plus. The DWP equally maintained she could not qualify for incapacity or disability benefits. Quick to cut and pronounce. Blind to suffering. Slow to plug the leaky gaps in their own systems that let the icy winds of poverty blow through the lives of innocent, vulnerable citizens. Numbers and tick lists instead of names and real people like Helen and Mark.

Please take a couple of minutes to listen to Sue. Then hear Mark, with Helen at his side interviewed last year when they had been stuck in the system without help for more than a year already. They do not strike me as people who were eager to beg or wheedle. So they chose the only other way they could see out of a Catch 22 situation. Tragically they are not alone. Nor will they be in future.


The uncertainties of inhabiting a human body means that anybody, even the most smug and self assured, may tomorrow find themselves in an identical dilemma.


Please reflect before you glibly dismiss millions of your fellow human beings as less than human and so beneath your contempt and concern. This tragedy is a memento mori for all who think themselves immune from sickness or crippling downturns.

Today self reliant and smug. Tomorrow a statistic in a bureaucrat's closed file.

* Update: 9th November - I apologise that I was wrong that this would get no national coverage. The story was actually picked up today by the Daily Mail Army Veteran and his wife die in tragic 'suicide pact' after becoming 'too poor to live through the winter'
and tonight on the Channel 4 news.  

Ricky Gervais using Humpty Dumpty language?

“I don’t know what you mean by ‘glory,’ ” Alice said.
    Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for you!’ ”
    “But ‘glory’ doesn’t mean ‘a nice knock-down argument’,” Alice objected.
    “When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
    “The question is,” said Alice, “whether you can make words mean so many different things.”
    “The question is,” said Humpty Dumpty, “which is to be master      that’s all.”
    Alice was too much puzzled to say anything, so after a minute Humpty Dumpty began again. “They’ve a temper, some of them—particularly verbs, they’re the proudest—adjectives you can do anything with, but not verbs—however, I can manage the whole lot! Impenetrability! That’s what I say!” <sup>*

Just reading an article in today's online Guardian Culture Section Ricky Gervais: "Bring on the Haters"

How like Humpty Dumpty's stance on semantics Gervais' own perception of the controversy over his use of certain offensive words is.  


I'm not a "hater". I've probably cried with laughter at "The Office" as much as anyone. But I know the "in real life" derision and misperception fostered by his previous jokes about M.E. He joked at one stand-up show how he'd seen someone collecting for M.E.:

-M.E.? Not MS - not the crippling wasting disease. No, the thing that makes you say 'I don't wanna go to work today'.

There was a genuine M.E. sufferer in the room that day. She had to endure the humiliation of the whole room applauding and exploding with laughter at what was, whether Gervais would admit it or not, her expense and the expense of all M.E. sufferers who face the very ignorant attitudes being celebrated and reinforced in the said joke.


Then, recently, we have the outrage caused by the comedian's latest tweeting of an offensive word used to belittle people with Downs Syndrome. Gervais claims he has it on his own authority that the word has changed its meaning. 

Many have challenged him. Yet even in this latest article, all but the brave mum of two disabled children with whom he deigned to discuss the matter, are now labelled as his "haters". Again he paints himself as the hero and victim of the sphere where he dreams he has rewritten the rules of meaning. A tiny world focused away from empathy, compassion and any sense of connection with the lives of others more vulnerable than Mr Gervais.


As his new series' title says: "Life's Too Short".


Life's too short to forget your humanity and the responsibilities that go hand in glove with the rights of free speech. Otherwise, you're just like Humpty Dumpty in his sneering superiority that a word means what you "choose it to mean - neither more nor less". Life's too short to forget that words belong also to the hearer once they are spoken or written. Every mystified, indignant Alice can challenge you then. You can go on believing your own propaganda of course. But it doesn't save you from falling off the wall.</sup>

Panorama "Britain on the Fiddle": Straining out a gnat and swallowing a camel?

I was so incensed at the biased and inaccurate Panorama "Britain on the Fiddle", aired tonight 8pm BBC1, I sent a letter of complaint to the BBC.

BBC1's Panorama: "Britain on the Fiddle" 8pm 3rd November 2011

I was too sick to complain after John Humphrys' grievously patronising and offensive program on a similar theme last week. I used the few spoons I have left today to speak out. After all, the only thing needed for evil to triumph is for the good to do nothing. I'm not good, but evil mustn't be allowed to thrive unchallenged like this on national TV.


It breaks my heart to read all the despairing, hurting tweets, blogs and sobs from fellow disabled citizens of Great Britain on the social networks tonight.


We still have each other, and knowing others are in similar situations of being falsely branded cheats and fiddlers is something that keeps me strong in dark hours like this. My dander is well and truly up! Me and millions like me, eh?


This is what I said:


To: panorama.reply@bbc.co.uk


Subject: Re : Britain on the Fiddle, 8pm-9pm, BBC1 3rd November 2011

Panorama tonight (“Britain on the Fiddle”) was a travesty of all that I believed the BBC stands for.

Do we pay the extortionate license fee in order to have your so-called researchers peddle the government’s propaganda against the sick and vulnerable?

Does our license fee buy us the privilege of sitting through the drivel honed to incite disability hate crime I saw tonight and last week with John Humphreys’ appalling contribution to the anti-disability jigsaw you and such as the Daily Mail seem set on perpetrating?

I am incensed that such lies go unchallenged on this prime-time programme. I am disgusted that it is left to ordinary viewers such as myself to point out the errors here.

Who convinced the BBC to make another programme about benefit cheats? Did the DWP tip you off to a handful of cases so you could strain out a gnat and swallow a camel? We all know such people exist and agree, of course, they should be dealt with. What has kept them unchecked at liberty till now but slack and self-serving government departments?

However, sickness benefit fraud, according to the DWP stands at 0.5%. It isn’t “on the rise”. Of the £22 million lost by the government to fraud and error, only 4 million is accounted for by such cheats. The remaining £18 million is , as I understand it, lost through the errors and incompetence of the departments administrating benefits themselves. The government overpayments are costing the country more than sickness and disability benefit fraud put together. When can I expect to see your expose on that? Given your obvious bias and spouting of coalition propaganda, I am not holding my breath!


Am I to take it my license fee pays for you to choose to ignore real issues like this, in order to make Mickey Mouse knee-jerk programmes like this, which serve only to fuel unwarranted contempt, indignation and hatred against innocent citizens who have fallen prey to life-crushing disabilities and unemployment through no “lifestyle” choice of their own?

The cases you so gleefully paraded on this disgusting excuse for investigative journalism are, as you wholly failed to emphasise to your viewers, rare and extreme.

In the wake of your “documentary”, which documents nothing but your Corporation’s forelock-tugging to the powers that temporarily be, the 5 million disabled people who fight every day not only against the humiliating odds stacked against them in this weakest-go-to-the-wall society, but increasingly against the misrepresentation of their situation you are currently churning out to your ultimate discredit, are prey to terror they have neither courted nor deserved thanks to your casual cruelty.

I hope you feel no satisfaction in sinking to this level. I trust when one day you or yours are trapped by genuine disability and unable to escape into these fairy tales of Britain en masse “on the Fiddle” (the clue is in your title that this is exaggeration and, frankly, something far short of the truth we once trusted you to broadcast), you will not regret the degree of hatred you have fostered for people just like yourselves.

Disgusting. Shame on you, BBC.

Just received the automated response from Panorama. Sadly, the reply they promise if my email "requires a response" will be too late. The programme is now out there. The damage, distress and grief they have caused are spreading like ripples in a poisoned pool.

I hope they can sleep. I'm not sure I can, insomnia, discomfort or not.

 

Hurry up there with your inconveniently chronic or terminal disability!

Terminally ill people warned over possible benefit cut

We know it's coming.

Not just to the terminally ill who can't be made well to a time limit. But to those with illnesses that can't be wished away in a year for the convenience of those who bled away the resources others were stewarding respectfully. 


We know it's coming.

Faster than the cures for our illnesses.

Faster than the grim reaper can ride.


Faster than enough jobs can be created that the fit and strong can do.


Faster than adaptations of working conditions for the sick and weak with disabling, fluctuating long-term illnesses can be devised.

The politicians of all parties who have devised the Welfare Reform Bill with the one-year-and-you're-on-your-own rider to the Employment Support Allowance, don't hear anything coming. They're not even listening. They hope their own needs will never outstrip their ability to legislate.


Every day the dreaded envelopes flop onto doormats. The letters that herald the day that the innocent, the genuinely sick and those crushed by circumstances they never courted, never expected, yet honestly and hard-workingly paid their taxes towards, comes creeping up on every last one of us.


But I won't despair. I still have that luxury!

I've always lived within my modest means. I sit on second hand furniture bought cheaply when I was still working and could have afforded better. My choice, I'm not needing applause! My mum inspires my way of being. Simple stuff matters to me. I count myself blessed.

Few things I own are new or flash or worth stealing, let alone fretting over. As even those basic things like food and heat get less and less affordable, I'm adapting. What's the alternative I could live with? If those I've tried to be a useful friend to while ever I could, can help, they will. If not, I will starve and shiver with no regrets. Why would I regret what others have on their own conscience or not? Things I can't change by indignant bluster?


Nobody can make you bitter or feel guilty if you are not. They will try. We know they will try. But if you let them change your heart and chip away your joy and resilience, they really have won, haven't they?

Even if I end up in the gutter, you won't stop me looking at the stars.


Till then, on behalf of compassion, respect and all that's good and beautiful, I will quietly fight on.

Voice of the Voiceless "Scum"

Hear nowt...

See nowt...

Say nowt...erm, not likely!

Guardian article about the fight for the genuinely disabled



This article (link above) highlights how one woman is making a difference. Like disabled and disabilty rights campaigning bloggers everywhere, she is helping to enable the voice of the genuinely disabled to get across, in the face of the latest panic-driven welfare reforms.

We all know reform is needed. The fear is that the "one size fits all" approach, where the form-fillers of ATOS (to whom inadequately devised new "capability assessments" have been farmed out by the Department of Work and Pensions), will deem everyone fit for work just in order to tick boxes and meet targets.

Like most of us, I've been through rigorous DWP independent disability assessments before, when the outcome was always that in no way was my health adequate to return to work, even part-time. A pen-pusher saying "you're well" has never yet been a cure for systemic disabling illnesses like M.E.!

I really admire how this disability campaigner,  Kaliya Franklin boldly calls her own website:



Benefit Scrounging Scum


This is the label the media has blithely affixed to her, to me, to you and all those forced out of their jobs and onto welfare or early pensions by genuine illness, lumping us in the same bracket as malingerers and cheats to whom we bear no resemblance at all.

For many of us who are ill, the current welfare reforms that target all alike, fill us with dread, despair and unwarranted shame. Jobs are hard to come by even for the young and fit. Those of us who might manage to muddle through for a day or two, would then be so crashed and unwell that we would be worse off than ever before.

I know. I've been there. I forced myself back to work so many times until I could no longer walk, think or speak with M.E. 

Claiming welfare is no glamorous "lifestyle choice". It's a last resort. It's a lifeline that we hate to have to ask for, and one we never in our wildest nightmares imagined we would have to rely on, for a day, let alone for an extended period.
 

I, like thousands of others, earned a decent wage in a demanding, satisfying professional career and long studied-for calling, after a lifetime's apprenticeship of experiences, work paid and unpaid, and grafting.

I paid my taxes (I never claimed for half I could have in my job!) which I still pay, of course, living greenly, cycling and walking, working on my days off whenever the phone or doorbell rang, going the extra mile without a second thought (as everyone does in caring professions and  so many others), always called "hard-working", relied on by many with a full diary of work and social commitments and connections.


Now, through no choice of my own, here I am. Through some unseen virus, picked up through hard and risky work in foreign parts, (which people wrongly thought heroic, or crazy at the time, people who filled up my "spare" time for years afterwards wanting to hear all about my work, at their fundraisers and meetings!) I'm suddenly counted by those who don't even know me or my blemishless history of conscientious citizenship, as scum. Everyone and their dog can now say whatever they like about me and wish me to hell in a leaky handcart as a contemptible "benefit bludger."


We may be too sick to march or protest as we might have when well, as we gladly did back then on behalf of those more vulnerable people for whom we once gladly spent our time and efforts, and will again if able. (Speed that day!).


But there are ways now, by internet, for instance, by which vulnerable voices can still be heard. Some days I'm too sick to read a blog, let alone write one, but when I can, I try to do my part.


I lend my support, such as it is, to disability rights campaigners like Kaliya Franklin in this article, and her fellow blogging colleagues, like those who blog as


The Broken of Britain


and I appreciate The Guardian (for once!) for giving the unpopular hoarse voice of we voiceless "scum" a balanced airing for once, without all the devastating vitriol and hype.