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 a 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. 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.

IDS blames benefit claimants for the defecit

A couple of months ago I was interviewed for a piece in Disability Now about The Sun's hateful campaign against benefit claimants.

I said:

“A lot of people, including Sun readers, lost a lot in the recession. The Government is using benefit claimants as a scapegoat for the country’s financial problems. The Sun sees [the campaign] as a way of boosting the egos of their readers, thus boosting their readership, by attacking the people perceived as responsible for all the losses the readers felt.”

Today The Sun and the government have gone one step further than subtly hinting that benefits claimants are to blame for the recession as The Sun has Iain Duncan Smith quoted as saying:

Paying a fortune to the five million on handouts - like X Factor reject Wagner Carrilho - is a major reason the UK's deficit soared to a crippling £155billion, Tory minister Iain Duncan Smith told The Sun.

From: www.thesun.co.uk

That's right: It's not because the bankers messed up and we bailed them out, it's not because Osborne lets his chums out of their multi-billion pound tax bills, it's because people like me have the audacity to eat.

Yes there is some element of fraud and there always will be. However the academic Jane Tinkler from LSE points out that the fraud rate for benefits is less than 1%. According to CityWire tax evasion costs the Treasury 15 times more than benefit fraud. Yet the government and the tabloids continue to portray us as the villains.

The Sun also post some manipulated facts about the process of applying for Incapacity Benefit.

They say:

Mr Duncan Smith only discovered the worrying new statistic that 47 per cent of people on incapacity benefit had been signing themselves on in the last few days.

In the most recently available figures, from the financial year 2007-08, they told him that nearly half of claimants were passed by simply filling in a form and sending it off.

Yes, filling in a form and sending it off is part of the process, but it's not the only part. I claimed Incapacity Benefit in the 2007-2008 year so I know something about the process in the time period specified. At first I had to submit sick notes from my GP. My GP would sign me off for 3 months at a time so every 3 months I had to go back. This was until the DWP sent me the aforementioned form, the IB50. The IB50 doesn't just ask you "are you sick? Yes/no." It's a very long, detailed form. It took me days to fill it in. It asks about your mobility, your sanity, your continence, your communication, your ability to dress and undress yourself, and pretty much anything else you can think of. But you don't just get the form, you also have to go for a medical where a doctor stares at your deformed bits to ascertain that you were telling the truth on the form.

Today's Sun article also says:

Britain was branded the sick man of the world last week after a report found we have more young people on incapacity benefit than any other industrialised country.

Which reminds me of the Daily Mail article in August that indirectly gave me the idea for Where's the Benefit?

I claimed (the now defunct) Severe Disablement Allowance (replaced by Incapacity Benefit) from the age of 16 until I got my first job when I was 22. You see, having impaired mobility I couldn't do bar work, stacking shelves in a supermarket, or any of the other fairly physical jobs people without a university degree tend to get. Which essentially meant I was unable to work until I was part-way through my degree thus educated enough for people to employ me to do a "thinking" job, the only kind I'm physically capable of.

Eugenics have progressed a lot since I was born and now a lot of disabled children don't make it as far as birth. Despite a lot of disabled babies being aborted there's not really a reduction in the number of disabled children around because medical advances mean that premature babies that wouldn't have survived in the past now do, but they're often left with cerebral palsy and other impairments. More children survive accidents and illnesses like cancer nowadays, but are left too ill or impaired to work so claim Incapacity Benefit when they turn 16. Despite his family money, had Ivan Cameron lived to see 16 he'd have been eligible to claim IB from his 16th birthday.

The fact that we have more young people claiming incapacity benefit than any other industrialised country is almost certainly linked to the excellence of our health service and we should be proud that children who'd have died from an accident, illness or premature birth in another country are still alive to claim incapacity benefit 16.

I came across today's Sun article through the fabulous (and award winning!) Disability Hate Crime Network because of their concerns that such hateful propaganda could fuel a rise in disablist hate crime. With our government and one of our biggest newspapers stating that incapacity benefit claimants effectively caused the deficit which the government are blaming all the cuts on, is it any wonder visibly disabled people are getting called "scrounger" and told to get a job by bus drivers?

Another punishment?

As if cuts to IB, ESA and DLA weren't weren't enough, Mr Duncan-Smith is at it again. He plans to introduce an initiative called 'slivers of time', an ultra flexible way of working, aimed at disabled people and lone parents.

From the Guardian:

Slivers of time, a social enterprise founded by the former BBC producer Wingham Rowan, is designed to tap into the pool of people who cannot work the usual hours expected even of the average part-time employee. It is aimed at parents with young children, disabled people who may not be available for work for most of the week, people who care for a dependent adult or the long-term unemployed who want to ease slowly back into work.
Its proponents claim the reform would mean that a disabled or lone parent would be able to book a few hours of work a week on their terms.

Sounds good right? I mean, I'm sure that I would be capable of doing a few hours each week - so where's the problem?

The problem is that I don't know which hours I would be able to work. The hours would still have to be arranged - say, 2 hours on a Monday, 2 hours on a Wednesday. But what if I'm just not feeling up to it when those days arrive? Would I be able to change those hours? How am I supposed to know when to change them to? Would the employer let me do this all the time? I can't see any employer putting up with that. They need to know they have enough staff and when those staff are working, employing someone who won't know if they'll be able to work or not isn't likely to be high on their list.

Unless an employer is happy for their worker to turn up as and when they are able, I can't see how this will work at all.

And I know that many disabled people will worry that if they don't comply they will be sanctioned. After all, the ConDems seem determined to push people into work whether it is right for them or not, whether they have tried or not, so will we be punished if we can't do this?

And as for people who care for a dependent, are they supposed to know when said adult will be well enough to not need them for a few hours? Or perhaps the Government is expecting them to book a carer for a few set hours so they can work? This would seem a little, no, a lot, ridiculous.

Funnily enough none of these points have been addressed. I wonder if Ms Miller will question them on our behalf. Time will tell. But I'm not holding my breath

Cross posted here

Source

DLA and work? Who is confused here?

At the moment, it's me that's confused. You see, the media still report on Disability Living Allowance as if it has some kind of relationship to whether the recipient can work or not. But that's not the case at all!

In fact, as you will see from my earlier article "The real difference made by Disability Living Allowance", often DLA is what enables people to stay in work - perhaps it is spent on taxis to the office, or on food or a cleaner (because the disabled person either has enough energy to go to work, or to cook and clean for themself, but not both).

So why does the BBC report on possible changes to DLA in the same breath as a reference to "work"? Is it the journalist at fault, or (more likely in my opinion) they are simply repeating the words of various MPs. Either way, I'd like to see some clarity over this issue, because at the moment I am confused by what is being reported.

In this article, about the most costly UK benefits, the BBC reports that 'Work and Pensions Secretary Iain Duncan Smith recently said the benefit would remain separate from "universal credit", with carers free to take part-time or short-term work without losing their benefits.'

This is good news - the last thing we want is for DLA to be sucked into a credit system which pays out based on your ability to take a job - although the reference to carers being able to work is a little confusing. I presume this refers to unpaid carers, who currently claim Carer's Allowance for looking after a relative, but it's hard to be sure.

The article continues: 'There are no plans to reduce DLA, but a strict new medical assessment is due to be introduced from 2013 to help claimants "reduce dependency and promote work".'

Now I really am confused. As I reported earlier, sometimes DLA is spent in a way which will enable the disabled person to stay in employment, but it is actually paid because of needs which are completely irrelevant of the recipient's working status. After all, your ability to wash yourself, or to walk (to take two simple examples) does not change because you do, or do not have a job.

The government has already said that the new medical test is intended to reduce the number of DLA claimants by 20%. But I am not sure how taking benefit from 1 in 5 people will "reduce dependency" (on what?) and "promote work" - indeed, several of the people quoted in my previous article about DLA would have to stop working if they lost that benefit, because they do not have enough energy or capacity to both care for themselves AND go to work. If the government think that turfing disabled people off DLA will suddenly give them the capacity to work, they are very much mistaken. It will just disable them even further.

I have one thought, and fear, which may explain the confusion in what has been reported. Perhaps MPs are referring to DLA as being related to work because they have a secret plan to introduce means-testing in the future, in the same way that they have recently announced that households with a higher rate tax payer will no longer qualify for Child Benefit? I sincerely hope that's not the case, as DLA is essential for the individual disabled person's independence. Thankfully, no such plan exists at the moment.

Disability Living Allowance is paid regardless of whether the disabled person is in work. Journalists and MPs, please take note!

Disability cuts - one opposition MP's perspective

Last week I emailed my MP, Gerald Kaufman (Manchester Gorton, Labour) to ask him to do a couple of things regarding the spending cuts and how they will affect disabled people.

First, I asked him to write to Iain Duncan Smith to push for assurances that the Department for Work and Pension's Comprehensive Spending Review proposals would be subjected to a full and robust disability impact assessment.

I also asked him to sign Early Day Motion 706.

EDM 706 says:

That this House welcomes the Coalition Government's commitment to ensuring that the public spending cuts will be fair; is concerned that the Government has not adequately assessed the impact that spending cuts will have on disabled people and their families; notes that nearly a quarter of individuals in families with at least one disabled member live in relative income poverty; further notes that only 50 per cent. of disabled people are in paid employment; recognises that millions of disabled people rely on state financial support to help meet their social care needs and the extra living costs associated with their impairment; seeks assurances that the Government's Comprehensive Spending Review proposals will be subject to a robust disability impact assessment; and urges the Government to take steps to ensure that spending cuts will not further compound poverty and social exclusion experienced by disabled people.

I've now received a reply and I hope Kaufman won't object to me sharing his comments widely.

He has promised to write to Duncan-Smith and keep me informed of the response, when it comes.

However, he has expressed reluctance to sign EDM 706 because:

[it] begins by welcoming a commitment by this government, since I do not welcome their whole approach to disability or other issues affecting vulnerable people.

I am torn. On the one hand, I applaud my MP's stance which seems based on sound principles and yet... apart from that opening line, the rest of the EDM is a strong plea for fair play regarding the cuts.

I think this is one for debate. Should I write back and ask him to reconsider? Or should I accept his position and wait, instead, for him to pile pressure on Duncan-Smith? What would you do?