I had to go to Addenbroookes Hospital yesterday. Cue the long, boring journey from Sussex to Cambridge, made longer and more boring by the road works that only appear at the start of school holidays.
Most political geeks like me have mini-causes ingrained in us. They achieve absolutely nothing but they make us feel better. I cannot buy a Murdoch paper, I refuse to buy drinks at Starbucks and I never, ever, use Motorway Service Stations.
Yesterday however, I had no choice. Just past Gatwick, I remembered I was supposed to have a a "full bladder" for the particular appointment I was attending and needed to stop to buy some drinks.
Once inside the soul destroying, plastic and chrome cattle shed I made my way past Costa Coffee - £2.69 for a large coffee and around £2 for every cake. Exactly when did we accept paying £2.69 for a cup of coffee? Every member of staff was of ethnic origin, surely not seeing the fruits or these extraordinary prices in their wage packs?
Then on past the "casino". Yes, really, there are mini-casinos to squeeze a few more pointless quid out of people making their way around the country. Makes perfect sense.
My husband decided he wanted a BigMac and queued with all the other economic-sleepwalkers for his bit of cardboard soaked in fat. Their staff too were all black except the two managers who were white and shouting at these minimum-wage slaves as if they were animals.
Finally I got to the "shop" This is not really a shop, it is exploitation in it's purest sense. I picked up a carton of Ribena (Normally 79p) and headed for the till. "£1.35 please" said the man crammed into the space behind the checkout, who was so morbidly obese that his hands morphed with his arms that morphed with his entirely round body.
I couldn't help myself. "£1.35?!?!?!? But that's terrible"
"Not at all" he replied from his dizzying minimum-wage perspective "You're just lazy. If you'd been better prepared, you wouldn't have had to stop here."
I promise this was his answer. To his customer. Who was a little curious about why she should pay double for a product for no good reason.
This blog post formed in my mouth, but I swallowed it whole. I wanted to suggest to him, that someone earning minimum wage might think again about judging his neighbour for not wanting to be exploited and instead, judge the out-of-control excesses of a capitalist system that has made it OK to charge us prices we can't afford.
I wanted to point out that FTSE 100 Executives got 32% pay rises last year, whilst he was almost certainly taking a pay cut due to inflation.
I wanted to point out that the energy companies were all announcing billions in profit in almost the same breath as raising bills for customers like him by up to 20%.
I wanted to point out that he was working in a "shop" in which he almost certainly could not afford any of the products.
I wanted to point out that the only reason "shops" like the one he was working in could charge such exorbitant prices was because we were a captive market. Without leaving the motorway and risking getting lost, few had any choice but to pay £1.35 for their Ribena or £2.69 for their cup of coffee.
But what was the point? I looked around me. The place was swarming with customers, cheerfully queueing up to be financially-abused. No-one questioned the price of their coffee or bagel or beak-burger. There are always a few old ladies translating the prices into "old money" shocked by the resulting shillings and pence tally, but they are getting rarer, replaced by the generation who have given up.
If, one day, I stop to find coffee has reached £10 a cup, I won't be surprised. There is, after all, only one way to keep shareholders in every increasing profits. I would be less surprised to see people cheerfully paying it. Yet another area of their lives where they know they're being shafted, cheated and mocked, but one they stopped questioning years ago.
I found the whole experience more depressing than reading the Daily Mail. We never stand up to anything any more and in fact we're happy to pay £2.69 for a cup of coffee. We're all middle class now and it makes us feel aspirational and a little spoilt to pay three times as much as we need to for a little slice of acceptance.
Our wages barely pay the bills and keep a roof over our heads, yet we have been sold exploitation in a beautiful box all tied up with the most alluring shiny bow. It happened so long ago, none of us remember what's inside the box any more. We're too distracted by the pretty wrapping.
Friday, 29 July 2011
Thursday, 28 July 2011
WARNING : Purnell contagion. Stay in you homes.
I know. It's not an epidemic we thought we'd have to deal with again.
We thought we had become immune.
Sadly, there he was last night on Newsnight, slimmer, but as snake-charmingly mesmeric as ever.
My logical brain shrieked "But listen to what he's not saying" but my media-generation brain shrieked back "But he's saying it so well." The sheer competence and confidence of the man is compelling. He answers questions unflinchingly, still prepared to "think the unthinkable" yet somehow making the unthinkable sound so very reasonable.
A lesson really, in New Labour policy development 2006 - 2010. Think up a really whizzy policy. Only focus on the positives of that policy. If it involves pushing a few thousand souls into poverty and despair, tell people it is all about alleviating poverty. If it attacks single mothers or working women, make sure the interview says how very good it will be for gender equality. If it will disadvantage pensioners, call it the "Fair Deal for Older People"
As we can now see, Cameron has taken the genre and made it his own.
I was shocked after Newsnight last night. I wondered if even I could spend an hour in a room with him debating welfare policy without signing up to some strange cult. I could see clearly how successive politicians might think he was the answer to all their prayers. After I'd stuck forks in my leg to break his spell, I thought of all the people who would be disadvantaged by a contributory based welfare state.
-Women who look after children, therefore not paying in as much as their male counterparts.
-The sick and disabled who became incapacitated at a young age. (note, the poster boy for crip-bashing didn't mention us once)
-Low paid workers when compared to those on higher incomes (of course)
But it's OK, he argued, why should we help all poor children? If their parents show no "responsibility" they should take the consequences. (Which were of course scores of dead children, but see what he did there? Not a peep)
Some already argue that perhaps he has had a Damascan epiphany, mesmerised by his silky charm. I would argue that the Pernicious Mr Purnell has analysed very carefully where the welfare cards are about to fall and ensured that he is the Ace of Spades when they do. Spades. You know, for digging great big holes to hide the "undeserving" in, and bashing the non-compliant over the head with.
He suggested people had fallen out of love with the Welfare state, but could learn to love a "Protection State." Using the model above, it seems that this translates to "Removing protection from those we don't like much" See what he did there?
We thought we had become immune.
Sadly, there he was last night on Newsnight, slimmer, but as snake-charmingly mesmeric as ever.
My logical brain shrieked "But listen to what he's not saying" but my media-generation brain shrieked back "But he's saying it so well." The sheer competence and confidence of the man is compelling. He answers questions unflinchingly, still prepared to "think the unthinkable" yet somehow making the unthinkable sound so very reasonable.
A lesson really, in New Labour policy development 2006 - 2010. Think up a really whizzy policy. Only focus on the positives of that policy. If it involves pushing a few thousand souls into poverty and despair, tell people it is all about alleviating poverty. If it attacks single mothers or working women, make sure the interview says how very good it will be for gender equality. If it will disadvantage pensioners, call it the "Fair Deal for Older People"
As we can now see, Cameron has taken the genre and made it his own.
I was shocked after Newsnight last night. I wondered if even I could spend an hour in a room with him debating welfare policy without signing up to some strange cult. I could see clearly how successive politicians might think he was the answer to all their prayers. After I'd stuck forks in my leg to break his spell, I thought of all the people who would be disadvantaged by a contributory based welfare state.
-Women who look after children, therefore not paying in as much as their male counterparts.
-The sick and disabled who became incapacitated at a young age. (note, the poster boy for crip-bashing didn't mention us once)
-Low paid workers when compared to those on higher incomes (of course)
But it's OK, he argued, why should we help all poor children? If their parents show no "responsibility" they should take the consequences. (Which were of course scores of dead children, but see what he did there? Not a peep)
Some already argue that perhaps he has had a Damascan epiphany, mesmerised by his silky charm. I would argue that the Pernicious Mr Purnell has analysed very carefully where the welfare cards are about to fall and ensured that he is the Ace of Spades when they do. Spades. You know, for digging great big holes to hide the "undeserving" in, and bashing the non-compliant over the head with.
He suggested people had fallen out of love with the Welfare state, but could learn to love a "Protection State." Using the model above, it seems that this translates to "Removing protection from those we don't like much" See what he did there?
The Independent and ATOS
I haven't done this for a while, but sometimes there are just so many good things to read, I need to share with you all.
If you missed this from Mark Steel in the Inde, you just have to read it now. http://www.independent.co.uk/opinion/commentators/mark-steel/mark-steel-time-to-inflict-pain-on-the-terminally-ill-2326355.html
Just in case I haven't been quite scathing or sarcastic enough about the ridiculous nature of ESA, assessments, ATOS and the DWP, Mark fixed that for me!!
If you missed this from Mark Steel in the Inde, you just have to read it now. http://www.independent.co.uk/opinion/commentators/mark-steel/mark-steel-time-to-inflict-pain-on-the-terminally-ill-2326355.html
Just in case I haven't been quite scathing or sarcastic enough about the ridiculous nature of ESA, assessments, ATOS and the DWP, Mark fixed that for me!!
Wednesday, 27 July 2011
The Magic Mr Potter
I have some wonderful news!
Earlier in the week, a Mr George Potter, Lib Dem, left a comment on my blog asking if I would help with a motion he had tabled for the Lib Dem conference in the Autumn. Here it is :
I've spoken to George who is as concerned as we are about ESA and the changes due to come into place under the welfare reform bill. We will be working together to raise as much support for the motion as we can and to, hopefully, ensure that the motion passes.
The debate is scheduled for the Sunday of the Lib Dem conference (18th September) and I urge any and all of you with Lib Dem MPs to contact them about this and ask if they would like any further information on the issues surrounding ESA reform.
Today, an article on Lib Dem Voice supports the arguments raised by George and I'm delighted to see this issue gaining momentum amongst their party.
I'll be posting more on this and the steps we can take to support George, but for now, I just wanted to share the great news with you all.
Earlier in the week, a Mr George Potter, Lib Dem, left a comment on my blog asking if I would help with a motion he had tabled for the Lib Dem conference in the Autumn. Here it is :
Policy Motion on Employment Support Allowance and Work Capability Assessments
Conference notes:
a) That the Government has stated an aim to move people off Employment SupportAllowance (ESA) and into work.
b) Work Capability Assessments determining eligibility for ESA are carried out by the private company Atos Healthcare who are paid on a target based system for every claimant assessed fit to be removed from claiming ESA and back into work.
c) 70% of case rejection decisions by Atos assessments which go to appeal are subsequently overturned.
d) The appeal success rate is much higher for claimants with representation than those without.
e) The way in which work capability assessments are conducted has been regularly criticised by Parliamentary Inquiries and by the Tribunal Judiciary.
Conference believes that:
a) It is the duty of a compassionate society and the Government to provide the necessary support for those who are unable to support themselves.
b) The new Assessment procedure is "not fit for purpose".
c) The Work Capability Assessment is inaccurate.
d) Any medical assessments should be carried out by trained medical professionals.
e) Whilst recognising the understandable need to remove false claimants from the system, it is wrong to have a system where the primary focus is on keeping people from claiming the benefit and treating every claimant as a potential fraudster, rather than a focus on ensuring that the most vulnerable get the support they need.
f) A system where 70% of decisions are overturned at appeal is not cost effective due to the high cost of holding appeal tribunals and the associated administration costs.
g) The new Assessment procedure, whereby claimants are assessed by the use of a computer-generated questionnaire in which the Assessor uses a "tick box" technique, does not take into account the claimant's medical history as provided by their GP and/or Consultant.
Conference calls for:
a) All medical components of Work Capability Assessments to be undertaken by trained professionals.
b) An overhaul of the assessment process moving the focus to ensuring greater accuracy in assessment, a less stressful assessment process and that the disabled get the support they need.
c) Any new or revised assessment process to take into account the claimant's medical history as provided by their GP and/or Consultant.
d) The replacement of the arbitrary time limit on the length claimants can claim ESA if they are put into the work related activity group with the introduction of a time limit dependent on individual circumstances.
e) The assessment criteria to be made clearer so that claimants and society in general understand what constitutes an illness which is so debilitating as to warrant ESA being paid.
f) The appeal process to be sped up and for all claimants going to appeal to be given access to adequate representation.
I've spoken to George who is as concerned as we are about ESA and the changes due to come into place under the welfare reform bill. We will be working together to raise as much support for the motion as we can and to, hopefully, ensure that the motion passes.
The debate is scheduled for the Sunday of the Lib Dem conference (18th September) and I urge any and all of you with Lib Dem MPs to contact them about this and ask if they would like any further information on the issues surrounding ESA reform.
Today, an article on Lib Dem Voice supports the arguments raised by George and I'm delighted to see this issue gaining momentum amongst their party.
I'll be posting more on this and the steps we can take to support George, but for now, I just wanted to share the great news with you all.
Tuesday, 26 July 2011
Quick Osborne Excuse Survey
So, what do we think? If growth figures are as bad as expected, which excuse do we think the baby-chancellor will use today? We've had the "Wrong Kind of Snow" and we've had "Too Many Bank Holidays." Suggestions for today have already been posited : "The Japanese Tsunami" and "The Royal Wedding" (though I'm sure he said the Royal Wedding would be good for this quarters growth figures before....)
Here's my top ten suggestions, please vote below and we'll see how accurate we were later.
1) The dog ate my growth
2) Too many people watched The Apprentice instead of setting up their own businesses
3) The ONS refuse to include imaginary growth or money trees in their projections
4) A flock of marauding geese ate all our tax returns
5) The Cheryl Cole brand got tarnished leading to a fall in consumer confidence
6) The weather in May was particularly hot and no-one bought any woolly garments.
7) It's all Rupert Murdoch's fault. (Well, everything else is, it might work Dave?)
8) Aliens in fact landed sometime last May and took over the bodies of the entire front bench. They are secretly working against me to undermine our prosperity.
9) I told my butler to "Keep the Change"
10) I'm just really, really bad at economics and should not have control over my children's piggy banks, never mind the wealth of a nation.
Here's my top ten suggestions, please vote below and we'll see how accurate we were later.
1) The dog ate my growth
2) Too many people watched The Apprentice instead of setting up their own businesses
3) The ONS refuse to include imaginary growth or money trees in their projections
4) A flock of marauding geese ate all our tax returns
5) The Cheryl Cole brand got tarnished leading to a fall in consumer confidence
6) The weather in May was particularly hot and no-one bought any woolly garments.
7) It's all Rupert Murdoch's fault. (Well, everything else is, it might work Dave?)
8) Aliens in fact landed sometime last May and took over the bodies of the entire front bench. They are secretly working against me to undermine our prosperity.
9) I told my butler to "Keep the Change"
10) I'm just really, really bad at economics and should not have control over my children's piggy banks, never mind the wealth of a nation.
Monday, 25 July 2011
**URGENT APPEAL**
Hi guys.
Tomorrow, a terribly damning report will be released on ATOS. http://www.guardian.co.uk/politics/2011/jul/24/atos-faces-critical-report-by-mps?CMP=twt_gu
Our phones and emails haven't stopped ringing today with media requests and we simply don't have enough people to cover them all.
Most importantly, ITN want to do a piece for tomorrow on people who've HAD AN ATOS ASSESSMENT AND HAVE GONE ON TO A TRIBUNAL.
If you have I'm asking you a very big ask. Are you prepared to be interviewed? Will you tell them your story? Could you cope with TV cameras coming to your home today or tomorrow?
I know it's absolutely terrifying. I understand with all my heart how many of you are so frightened by the DWP and ATOS that you daren't even leave your names when you comment here, but this is a big chance. It is our chance to tell our stories, a chance to show the public how real people are made to suffer every day by these reforms.
If you think you might just be able to do this, please get in touch at suey2yblog@hotmail.co.uk and I promise, I will do everything I can to make it as painless as possible.
It means taking a personal risk, but it might also mean that you help to save millions from going through what you had to go through.
Thanks,
Sue
Tomorrow, a terribly damning report will be released on ATOS. http://www.guardian.co.uk/politics/2011/jul/24/atos-faces-critical-report-by-mps?CMP=twt_gu
Our phones and emails haven't stopped ringing today with media requests and we simply don't have enough people to cover them all.
Most importantly, ITN want to do a piece for tomorrow on people who've HAD AN ATOS ASSESSMENT AND HAVE GONE ON TO A TRIBUNAL.
If you have I'm asking you a very big ask. Are you prepared to be interviewed? Will you tell them your story? Could you cope with TV cameras coming to your home today or tomorrow?
I know it's absolutely terrifying. I understand with all my heart how many of you are so frightened by the DWP and ATOS that you daren't even leave your names when you comment here, but this is a big chance. It is our chance to tell our stories, a chance to show the public how real people are made to suffer every day by these reforms.
If you think you might just be able to do this, please get in touch at suey2yblog@hotmail.co.uk and I promise, I will do everything I can to make it as painless as possible.
It means taking a personal risk, but it might also mean that you help to save millions from going through what you had to go through.
Thanks,
Sue
Open Letter to Iain Duncan Smith
The day you get that diagnosis is the day the blood runs cold in your veins. Everything stops. Sound is muffled in your ears, shock runs through you and you know in that moment that nothing will ever be the same again.
Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.
If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.
You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.
Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.
You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.
The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.
Most are not that lucky.
Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.
They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.
Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?
There is something worse.
Finding that there is no cure.
Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.
The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.
The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?
Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.
One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.
There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.
We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.
We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.
We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.
****************
This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why Time Limit ESA to a year? Why remove all support from these vulnerable families after one year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.
This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.
This is why more people must qualify for long term support and go into the Support Group of ESA. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.
This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.
By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.
Please listen. Please think again.
*************
Please do all you can to help me share this today. You can link to it, share it on Facebook, Twitter or Google+. If you have a Conservative MP, then PLEASE can I ask you to send him this today? You can do it in just a few moments here http://www.theyworkforyou.com/
Thank you.
Life, that always seemed so ordered and full of potential becomes precious. A gift greater than any you ever appreciated. A privilege, not a right. Your own mortality comes crashing in around you, redefining love and hope and dreams for the future. Everything will change forever in that one horrifying moment.
If the unthinkable happens to one you love, the sense of impotence and fear is worse. You want it to be you. You'd give anything to change things around, to take away all the pain and suffering. You want to take on every invasive test, every painful procedure. You want it to be you laying there, pail and weak, vomiting endless traces of chemo or morphine into a grey carboard tray.
You want to be there. All the time. Every minute of every day. You want to protect the person you love most in the world, to fight for them, to arrange the very best care available. Suddenly work and meetings and focus groups are forgotten - irrelevant even - when contrasted with the battle for life.
Money won't save them. It might make things easier, speed up care or assure access to the most innovative treatments, but the battle is yours and yours alone. Together.
You grieve. Grieve for the carefree days, the easy confidence that good health brings. You grieve for the future, so cruelly and randomly threatened. You grieve for the love and support that always came first. You grieve for your children and the spectre that now hangs above their heads every minute of every day. Youngsters become carers and you grieve for the easy innocence they will never know again.
The luckiest of all might be able to leave work that very moment, rush home and gather up family in strong, caring arms. The luckiest will only have to face a battle with the disease now tearing their family apart, with little thought for other practicalities.
Most are not that lucky.
Most will find that just as their world falls apart, they must still pay the mortgage, still feed the children, still keep working hard. They will suffer endless, unimagined agonies as they try to keep all the balls in the air, desperate to fight side by side with their soul mate but unable to do so.
They might lose a wage. Suddenly and without warning their income may half just as they need it most. They may have no choice but to watch in terror as their modest savings drain away, placing fear of poverty side by side with the fear of death.
Is there anything worse? Could there be anything worse than finding your life turned upside down in every area? Job under threat, home at risk, ambitions and dreams destroyed? As your children's faces become etched with fear, do you tell them Mummy will be OK? Do you keep your financial fears to yourself? Do you take on every burden until the pressure gets too much? Do you try to do the work of 10 men? Superman at work, loving support at the hospital bed, devoted father and capable housekeeper? Can you bear the pressure or do you crack yourself?
There is something worse.
Finding that there is no cure.
Finding that there are no magic chemo bullets to stamp out the darkness, no dazzling operations to cut out the contagion. Treatments are patchy - the doctors tell you if you're lucky they can "manage" your condition, but from this day, life will be about survival. Forever.
The treatments won't stop in a month or a year, but they will still make you vomit or send shooting pains through your skull or make you so sensitive to sunlight that you can no longer go outside. No longer take your children to the park or dig sandcastles in the hazy summer sun. They might make you weak, or angry or depressed. They might cause more symptoms than the disease itself, but they keep you alive and "alive" is all those who love you need. Do anything Mummy, but don't die.
The boss who's been so supportive can't support you forever. 6 months, maybe even a year, but in the end, even the most caring boss will have to draw the line. What do you do? Who will care for your family while you work? Is you child old enough to call an ambulance if she has to? Would she know where the special pills are kept in case Mummy won't wake up? Can you teach her your work number or do you fret and worry through every day, never knowing what you will return home to?
Things won't improve. A grey faced doctor might tell you gently that they will only ever get worse. Functions will fail, dignity will crumble, every previously automatic task will need thought and support. There will be wheelchairs or oxygen tanks or feeding tubes. You will have to learn to change incontinence-bags or give injections or rig up sterile feeds. You will have to find money for a hoist or a voice recognition system.
One day, Mummy might not be able to answer. She may not be able to walk or leave her bed. Birthday parties will have to move upstairs to a fetid room that smells of the end, but you will smile brittle smiles and put up bunting, pretending that nothing has changed. You will all laugh a little too shrilly, jump just a little too nervously, but you will pretend. When the kids are safely tucked up and your partner is finally sleeping a tortured morphine sleep, you will cry great heartwrenching sobs into a cushion so nobody hears.
There are legions of us Iain. Probably millions. We fight great battles every day. We find resilience and love we never knew existed. We find pride in the face of indignity, hope in the face of despair. Our relationships are tested every day and every day we have to whisper "but I love them". Every day, that love has to win. Every day, love is all we have left to get us through.
We pretend the poverty doesn't matter and when faced with life or death, it's funny, but it doesn't seem to matter so much. An afternoon in a park at the beginning of spring, watching the children climb steps to great slide-summits, their joyous eyes flashing in the watery sun is almost too much pleasure to bear. The poignancy of knowing it could always be the last time makes the simplest things precious.
We pretend our ambitions and dreams were not important. Strange, but when your ambition becomes surviving to see your children married, it's true, they don't matter so much.
We pretend we're strong, but we only have the strength we all have, buried deep inside us. We just have to dig deep down to find it. Every day. Forever.
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This is why you cannot decide, randomly, that after a year, our families must struggle on alone. A year?? Why Time Limit ESA to a year? Why remove all support from these vulnerable families after one year? Why not 6 months or 3 years or a day? It bears no relationship to the real world, it is policy designed by Dali.
This is why you cannot make us wait 6 months for Disability Living Allowance. Why 6 months? By then we may be bankrupt, we may have lost our homes. We may be dead. The state may end up paying much more through picking up the pieces than in supporting us fairly from day one.
This is why more people must qualify for long term support and go into the Support Group of ESA. Because at the moment, you are failing people with lives like mine. People with Parkinson's and Arthritis and MS. Mothers and sons, daughters and fathers. People with lupus, schizophrenia, bowel disease, kidney failure, epilepsy, personality disorder, heart disease, COPD and thousands of less well known conditions that destroy lives. Countless things as devastating as cancer and some more so.
This is not "welfare." Welfare means to fare well. It is the mark of compassion and evolution in a democratic society. It means no-one should be left in absolute desperation. Your policies are causing this total desperation and I'm sure it is not what you want to do or set out to do.
By all means reform. Goodness knows the system does need to change, but the great myth is that it needs bigger sticks to beat us with and stricter reasons to ensure we do not qualify. Please Iain, listen to me today. You have all beat us hard enough for many years. There is nothing more to squeeze or remove or deny. We live in poverty and uncertainly already, and we have reached a tipping point. Labour's ESA was disastrous enough and already failing. Time limiting, tightening the descriptors yet again and leaving a lengthy qualifying period for DLA is going to cause real hardship and suffering.
Please listen. Please think again.
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Thank you.
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