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!

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

Believing six impossible things before breakfast

"Alice laughed: "There's no use trying," she said; "one can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was younger, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."
-Lewis Carroll in "Alice in Wonderland"

Here is a letter that passed between Lord Freud, Minister for Welfare Reform and the Countess of Mar, the prominent advocate for M.E. awareness. Freud reply to Mar.pdf

It clearly states: "Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder."

Yet I equally clearly heard another male peer express as a fact that it was not known whether the disease was wholly mental or would one day be cured physically. This was during Monday's House of Lords discussions of proposed amendments to the Welfare Reform Bill (stopped myself typing "catastrophic" there - didn't I do well?). Apart from his giving no convincing or indeed any satisfactory responses to his noble friends' many probing questions, I did not hear Lord Freud or anyone else correct him.

So who will speak the truth in our own assessments with ATOS and the DWP? The silence is deafening.

In other news, I see M.E. biomedical researcher Judy Mikovits is likely to be released from jail tonight after being arrested last Friday on felony charges relating to her dismissal in September from the Whittemore Peterson Institute in Nevada.
Inmate Mikovits meets judge
When will the truth be heard in this distressing case?

I think as M.E. patients, we are getting pretty skilled at "believing six impossible things before breakfast". It takes practice, but we get so much of that these days. Hard to swallow like our swollen throats and glands. Hard to get our head rounds in the midst of brain fog. But practice makes perfect.