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!

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.

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.

Formal complaint to Lancet about the PACE trials; a scandal unmasked

Quote "It is important to make very clear that ME/CFS is not a somatoform disorder but a serious multi-system organic disease." Unquote.


Quote: "The international evidence-base is that ME/CFS is a serious, inflammatory multi-system disorder with well-documented abnormalities in the central nervous system, the autonomic nervous system, the cardiovascular, respiratory, neuroendocrine, immune and gastro-intestinal systems, with convincing evidence of muscle pathology, defects in gene expression, specific HLA antigen expression, and with irrefutable evidence of chronic inflammation." Unquote. 

How long can the perpetrators of the PACE (Pacing, graded Activity, Cognitive Behavioral Therapy; a randomised Evaluation) trials deliberately surpress the evident truths in the above statements? How long will those who engineered and funded these skewed, flawed and cynically targeted trials, including the DWP and psychiatric lobby, get away with this international scandal devastating lives?


Will some influential stuffed shirt be telling me next that my Type 1 Diabetes is "all in the mind"? Can I hear a cry from the nightmare future going: "Drop the syringe, you pathetic slacker, and start producing insulin like normal upright citizens with real backbone do?"

After all these years, we wonder why folks still pat us metaphorically on the head and say "Hope you're feeling well."

Catch up, world! Our lives are slowly running out while you fail to get your heads round the all too real M.E. we have to live with every single day!

Professor Malcolm Hooper's complaint to the Lancet reminds how the PACE trials are actually designed to withdraw support and help from patients with M.E./CFS in order to deny the illness and so remove benefits and credibilty from the genuinely ill.

A long read, but one that makes plain all that is rotten in the worlds of medicine, healthcare and research, welfare reform and spin.


Formal complaint to Lancet about the PACE trial paper

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.