Blogging Against Disablism - Tube-ageddon

Blogging Against Disablism

Today, I'm having a feeding tube fitted. A small tube will be inserted through my nose, down into my stomach, and calorific gloop will be plopped hourly into my recalcitrant bowels overnight. Every night. 

The tube will be taped in place and within days, believe it or not, I'll forget it's there. 

However, the rest of the world will not. 

There's something about tubes inserted in orifices that freak people right out. Ive spent time in wheelchairs, used walking sticks, held court in bed, but nothing says "pity the poor broken crip" like a tube.

This is what will happen : I will walk into a shop/restaurant/school yard and EVERYONE will stare. Some will pretend not to, others will quite literally gawp, slack jawed, making no effort at all to hide their horror. 

Somehow the tube translates to non-tubies as "This person is dying." I don't know what it is, but almost everyone assumes you are beyond the reach of modern medicine. Somewhere, somehow, epic failure must have resulted in this incomprehensible, disgusting apparition. 

The first time I went out in public with a feeding tube, I remember sitting on a bench with my hubby and a friend in a shopping mall. Bored with the gawping and pitying looks, I started to slowly suck my cheeks in and slide off the seat. If they wanted dramatic, I could do dramatic. 

Another time, a guy rode his bike into a lamppost looking back over his shoulder at tube-a-geddon. That's direct Karma, that is.

Yet another time a woman in MacDonalds muttered to her kid that it was enough to put them off their lunch.

God forbid I should drink alcohol or smoke a fag? Tube crips must have no vices. If they do, that's clearly the reason for their tubey downfall. If I smoke, the tube must be lung related, if I drink, liver related. If I eat, people look nervous. 

So dear world, It's a tube. Get over it. My guts don't work. It's not all that complicated, or even all that serious. I'm not dying, I can breathe just fine and if I fancy a mojito and a Marlboro, I shall jolly well have them. 

However, there may be a silver lining. I'm taking my boys to Disneyland in a few weeks and may stoop to pulling the tubey-crip card shamelessly wherever pity might work to their advantage. As my recently departed darling Daddy used to say "no point getting old if you don't get sneaky". 

R.I.P. Ronald "Joe" Page 1922 - 2013

My Daddy was born in 1922, in South London between 2 World Wars. A London still more likely to see horses travelling through Piccadilly than motor cars.

Born to parents who barely knew he was there, his early years were beyond modern imagination. He stole food to feed his little sister and, being Dad, no doubt, other comforts. By 11 he was thrown into a borstal where he would stay until they threw him out at 15, illiterate and unloved, without a penny to his name.

Any wonder then that he fell into an underclass who admired his survival skills, running messages for the Krays and other, more small time London gangsters.

But Ron took himself to night school and learnt to read and write. Brilliant, handsome, wily and more charming than any other man I ever met, he was a survivor.

Soon, at just 17, war broke out and Ron joined the RAF, lying about his age. He fought all through the second world war, trained to be a spitfire engineer, stationed mainly in the African desert. A generation of state sponsored murderers were trained to kill, then expected to come home and live like good little boys. He was knocked off the wing of a Spitfire (MAINPLANE I hear him shout) by Douglas Bader and taken prisoner by Rommel. But Ron survived. He always survived.

"Holding them back with cold steel" Spitfires in the background, his "bivvi" - home for 5 years - on the left

His generation got no reward for their great sacrifice. In retirement, his 7 lost years were marked in no way at all.

Ron would never be a good little boy. Why should he? Life had dealt him a tough hand and only a little ducking and diving would get him through.

He won ABAs. He boxed for the RAF - think for a moment what that meant, the status and admiration afforded a tough guy who out toughed all the other tough guys.

He played wicket keeper for Surrey Colts and every one of his fingers was broken and gnarled from catching impossible catches. He had a trial for Walthamstow football club back when they were a 1st division club. He tried out the same day as Jimmy Hill. Dad was offered a place, but couldn't afford to take the drop in salary. Jimmy took his place and the rest, as they say, is sporting history.

After the war, he worked as a toolmaker, working his way up to foreman before starting his own spring making factory. I'm not sure quite how much of the business was legitimate.

He leaves 7 children - 4 sons and 3 daughters, of which I'm the baby. His princess.

Ron was a drinker, a bon viveur, a small time, loveable crook. He had a "look". Oh dear God, you never messed with the "look". The quieter he got, the stiller he became, the more trouble met the poor unwitting fool who pushed his luck.

Pity a succession of hapless boyfriends who met "trial by gangster-Dad" as I was growing up. As a teen I hated it, but later I came to rather like the selection process. If they turned tail and ran, they were rarely worth my attention. If they stood and toughed it out, they were generally keepers - and Dad admired them the more for it.

He swore he'd never give me away to anyone. My Dave melted his resolve. You might catch a trace of the "look" about it all though ;)

He met my Mum in the late 60s and they fell immediately in love, a love that lasted til the very end. They married one snowy day, just the two of them in wellies, no need for fanfare or procession.

Oh, he wasn't an easy Dad. The demons that haunted him from a broken, unloved childhood and a youth spent bombed from "arseholes to breakfast time" by Germans, left scars. We all need crutches and Dad's were booze and bravado. Charming, loving and hysterically funny by day, dark, sarcastic and brooding by boozy night, life with Dad was a roller coaster, but an exciting, challenging roller-coaster.

Oh the stories I could tell! But I'm sure most would get him arrested posthumously. "The legend of the footprints in the snow", the night he and his then grown sons drank their way through an illegal brewery to "hide the evidence", the box of chickens, (?!?) swimming races down the Thames before the police could fish him out - you should have been cross, you should have stopped him, but no-one ever stopped him and no-one could ever stay cross. He smiled that crooked smile and all was forgiven. He talked the talk and charmed the charmless.

His advice made me who I am - "There's no such word as can't." "Worry, and you worry all of your life." "Watch the tiger when it's licking your ear." "Never sign anything." I could never have survived decades of crohn's without his unique brand of tough love and fierce pride. When everything was desperate, when I had used every last drop of hope and fight, only he would tell me to "man up". "Get up off that bed, kick that fucking doctors arse and FIGHT! Fight my girl, no-one's going to save you, save yourself." When everyone else looked at me with pity, he looked at me with pride, when others offered sympathy and cosseting, cloying reassurance that it was all too hard, Dad reminded me it was NEVER too hard - and what an example he was! If he could survive mastoids, meningitis (pre-antibiotics) malaria and peritonitis, I could survive anything.

Oh, men like Ron had their faults, but to be loved by them? To be centre of their universe? To know that no-one could ever hurt you and live to tell the tale?? To earn their pride? It makes life special, embroidered with golden fire and lucky stars, opportunity and competitive confidence.

When I got my degree, I swear he knocked on every door in our street.

His strength!! Men like Ron don't exist any more. He never grew accustomed to real food, good food, healthy food. He lived from a "chindet pot" a kind of curried stew of whatever Mum and I left. Everything went in and it was never emptied. Somewhere at the bottom of that pot was ten year old food, but his constitution was indestructible, his immunity resisted any illness, ever. Until the very end, his "treats" were a nice pot of jellied eels, a trotter or some nice chewy whelks.

He got a growth on his hand once and hit it with a hammer every day til it disappeared.

In his 70s, Dad liked to ride his bike to Bognor Regis and sit by the sea with a can of beer. In his dirty old bobble hat and body warmer with the stuffing hanging out, the eccentric old bugger looked like a tramp. One day a group of yobs tried to mug him. They threw his bike to the floor and tried to take his beer. He went quiet & still. He knocked the ringleader clean out with one punch and told them to run home to their Mummies. He was nearly 80.

Men like Ron shouldn't fade away. The massive stroke that left him helpless and insensible the day after my last huge op couldn't take him, it wasn't right! He should have careered of a race track, trying to be the oldest man to win a Grand Prix! He should have frozen stiff half way back down successfully climbing Everest.

But he lay there, and we told him we loved him every day as he faded quietly away. Perhaps the end wasn't fitting, but perhaps, after all, it was. The man who started life so alone, who fought so hard, who ducked and dived and conned and survived found peace with my Mum and I and the grandchildren he adored. Perhaps, after all, drawing a last breath and drifting away was the best end of all. At the end of his 91 years, he finally found peace.

With my boys, the light of his life

How do I live in a world he isn't in? Who will kick my arse and grit my teeth and tell me I can do anything? I suppose, somewhere, he will. As I remember his crooked smile and his cheeky grin, as I remember his enormous strength and indestructible lifeforce, he'll always be here. Where else would he be? Where else would he ever want to be but here with Mum and I forever?

My favouritest tweep, @DocHackenbush and separated-at-birth-twin just made this for me. I'll treasure it :)))

Thatcher's Funeral - From the Most Vulnerable of All

Welfare reform. Much needed shake up of a system out of control or cruel and ignorant attack of some of the most vulnerable people in society? Most have an opinion.

Many like me, were fighting the welfare reform bill way back in 2011. We know every last detail, every twist and turn, every sweeping change and every technical detail. Believe me, it's cruel. 

On the whole, I think the cruelty is in the details. Oh, not the headline grabbing Benefit Cap or Universal Credit. They're largely PR stunts that won't save any money at all. Universal Credit could have been rather clever if only ministers had understood the details. If only they'd really understood the people they were legislating for. Their lives, the difficulties they face, the traps in the system, the precarious fear of a life on the margins of society. 

One of the most sickening details of all still grates with me almost daily. It was so cruel so unnecessary. It overturned decades of cross-party consensus and decency. It picked on a group so vulnerable it takes my breath away. And it stripped that group of basic rights despite ministers not actually understanding the policy at all. How cavalier can you be? How arrogant and out-of-touch? 

It was called the "Youth Premium" It only related to children who were born so profoundly disabled that they would never work as adults. Forget your Work Capability Assessments and your Scroungers, these children would never take part in society like you or I. Many would never talk, self feed, walk, play, laugh, fall in love. But they could still lead independent lives. Because we were a society that believed they should have a right to if they chose to.

The Youth Premium treated these children as though they had paid National Insurance. For a cost of just 11 million pounds, on becoming adults, these children were treated as though they had "contributed" through work and because of that, they were entitled to contributory benefits, they did not have to be means tested.

Such a simple thing, but what did it mean in practise? What did it mean to the people behind the numbers? The lives being toyed with? It meant they were entitled to live independently if they chose to. They were entitled to benefits in their own name, not as a means tested part of their family. Often, such profoundly disabled children had considerable compensation to see them through lives damaged beyond recognition by accidents. This compensation was just that. Money for an expensive future of care, adaptations to homes, aids to independence. For a lifetime, this money would have to pay for support just to make their lives as manageable as society could achieve.

No more. Any money would be part of the means test. They would have to run down reserves of cash or savings before the state would step in. Compensation is not income. Nor should it be. From the passing of the welfare bill, any security or savings put aside by families terrified what life would hold once parents or siblings had passed, would have to slowly seep away, leaving insecurity and hunger a shadow away before these few profoundly disabled neighbours and daughters and brothers could rely on any help or support from the state.

Our elite cabinet talked of how "unfair" it would be if "these people" "inherited" money but were still entitled to support from our social security system. No, they would simply have a little security to underpin the often modest state income someone with profound disabilities might expect. And how many of us can rely on generous inheritances anyway? Is that real life? A likely scenario? Of course not.


You might be wondering why I bring all this up again today. The law passed (you can see me pointing out to Chris Grayling why he didn't understand his own policy on Newsnight, here :

Well, it's that 11 million pounds. £11 million. In Westminster terms it would barely pay for the DWP's paperclips. It is a drop in the ocean of a welfare budget spanning 10s of billions. It only applied to a few thousand of the most disabled children in society (children just like Ivan Cameron, had he lived into adulthood.) But Lord Freud, failed investment banker and Minister for Welfare Reform, insisted that we could "no longer afford it" We could no longer afford to allow such profoundly disabled children lives of dignity and independence. No more security. No relief for worried families that they would be safe once they were gone. A cross-party consensus of decades, stripped away by ministers who didn't even know what they were doing.

This week, William Hague assures us we can afford £10 million for a ceremonial funeral for Margaret Thatcher. Opinion polls show the public don't want it, commentators from left and right are mystified, yet 2,200 people have been invited to a decadent funeral for a divisive PM who lies at the heart of many of the problems facing our society today. When I scanned the invitees yesterday, it felt surreal. A mish-mash of variety club has-beens, world leaders she shunned and elite aristocrats who shunned her when alive.

10 million for a dead PM, nothing for those living with some of the greatest barriers to society any of us will ever face. I actually feel a bit sick writing it down.

But perhaps, this is the most fitting legacy of all for a PM who assured us "there is no such thing as society"

Perhaps as she burns or rots (we will all do one or the other) every profoundly disabled life lived in chains of dependence because today's government didn't understand the details will haunt her. Perhaps she will see images of each and every one playing like a movie to her soul, wherever it ends up.

I hope so. Those children needed that £11 million. She doesn't.

Guest Post by Tanya Marlow - The Truth about DLA

I wish every last person in the country could read this guest post by Tanya Marlow. A little truth to wash away the government lies on Disability Living Allowance. Tanya blogs at Thorns and Gold 

Why this government is failing the disabled AND the taxpayer (DLA vs PIP)

"I have seen a number of news items recently, including periodicals which should know better, saying something like this: 

“Disability Living Allowance, the benefit that helps with the extra costs of being disabled, is being replaced by PIP. PIP will have regular face-to-face assessments, rather than DLA which was based on self-assessment questionnaires.” 

This makes it sound like DLA was an easy benefit to get, that it didn’t require any medical evidence, and that the fraud level therefore must have been high. It is plain misleading, and the truth of what is happening is being buried under debates about Wizard of Oz songs in the charts. 

Let me tell you the real deal with DLA. 

****

In 2008, when I first realised I was disabled enough to qualify for DLA, I filled in a questionnaire. It was relatively simple, with tick boxes, and you were given the option to write a little more. I ticked the ones applying to me (I couldn’t cook a meal for myself), and briefly explained the nature of my illness and why that meant that I was physically unable to cook for myself. You were asked for your GP’s details, so I assumed they would phone my GP to confirm my illness and the extent of my disability. 

They didn’t phone. They just refused my claim. 

The letter said, “You do not qualify for DLA Lower Rate Care because you can cook a meal for yourself.” 

Just that. 

They had not met me or contacted anyone who had examined me. They just looked at my description of my disability and called me a liar. 

I quickly discovered that this was not an unusual case: most people were turned down initially, and you had to go to a tribunal in order to get the right decision. I learnt that although the form appeared simple enough, you would not have a chance of getting your award unless you provided medical evidence from a doctor. Why they had not written that on the guidance notes, I just don’t know. In cases where they weren’t sure, they had their own medical examiner who assessed the claimant in person. 

So I appealed and provided them with a letter from my specialist who knew me and my condition well and had written up the notes of my latest appointment with him. He confirmed everything I’d said on the form. 

In due course I had a reply from the DWP: it was still a no. This time they had called both me and my doctor a liar. 

I got mad, so I went to tribunal for further appeal. 

At any point during this process, they could have sent the DWP’s own medical examiner to my house. They often do this as a matter of routine, in cases where the level of disability is in doubt. One lady who worked for the CAB described to me how the DWP medical assessor pressurised her to raise her hands above her head, even though she had said the pain from her Fibromyalgia was too severe. She broke down from his questioning and bullying tactics, but didn’t raise her hands above her head: partly because it would have caused her unbearable pain and made her Fibromyalgia worse, and partly because if she had done it, he would have ticked it off on his sheet as ‘can raise hands above head, no problem’ and she wouldn’t have got the benefit. As it was, he marked it down on his sheet as ‘refused to cooperate with the assessment’ and she had to appeal at tribunal (she won). 

When I went into the tribunal that day, three people (only one of whom was a doctor) questioned me. They didn’t only question me about my disability, but about my motives. “Don’t you want to get better?” they asked, as though disability were a lifestyle choice. “You will want to learn how to cook for yourself, won’t you?” 

I broke. I cried, and felt like a hypochondriac. I would have walked out (or rather, been wheeled out) there and then, had my degree-educated, thoroughly-researched husband not been there beside me, answering for me when I couldn’t face any more. I won my tribunal. I didn’t feel triumphant; I felt traumatised.

No wonder the statistics said those without CAB advice or legal support were far less likely to win their tribunal. They will have been bullied right out of there. And now, with the government cutting legal aid, I dare say those numbers of tribunal successes will be kept at a government-pleasing low, irrespective of whether or not the DWP make the right decisions. 

I was shocked at the effect that the DLA tribunal had on me. I had spent hours scrabbling around the internet to try and work out why on earth the DWP were refusing genuine claimants, and what were the ‘right’ words to describe your disability, all in order to get the £900-a-year benefit for Lower Rate Care. (Despite needing a wheelchair for any distance over 200 metres, I would not have qualified for the mobility component). 

The stress of the appeal, the being labelled a liar and scrounger knocked me. The emotional strain contributed to a worsening of my physical illness. I can quite understand why those who have mental illnesses are significantly in danger of committing suicide when they receive a wrong judgement from the DWP. 

A few months after the end of the appeal, the brown envelope came again – I had to reapply. The rate of fraud for this particular benefit has always been extremely low: even the DWP’s own figures estimated it at 0.5%. Frankly, I could understand why. The hoops are so hard to jump through. 

**** 

Under DLA, if your condition was variable or non-permanent, you were reassessed – regularly. This is nothing new. The only cases where people were not reassessed for DLA were cases where it would have been a waste of taxpayers’ money to do so, (for example, congenital blindness.) Now the taxpayer will be paying for such people to go through the stress of constantly being reassessed for PIP; presumably to check for the miraculous. (This also gives the government the option to further change the qualifying criteria for PIP in the future, excluding more disabled people from receiving help.) 

I will say it again: DLA was never awarded on self-assessment alone: you always had to provide written medical evidence from your doctor. They always had the option of sending their own DWP medical assessors – which they frequently did – and they always had the option to contact your GP and converse with them, which as far as I can tell, they didn’t. 

It was only in cases of severe and irreversible disability that they didn’t constantly reassess. This seems like a good use of the taxpayer’s money, not a bad one. 

And remember, DLA is a benefit to help disabled people with the extra costs of everyday living. it is not an out-of-work benefit: indeed, many people use their DLA to put towards hiring a car so that they can get to work more easily. (This is the motorbility scheme: not quite the same as saying ‘disabled people get a free car’). 

So what has changed? 

The biggest change is the descriptors for who qualifies as disabled. 

Can’t cook a meal for yourself? Under DLA: disabled. Under PIP? Not disabled. No benefit.
Can’t walk more than 100 metres? Under DLA: disabled. Under PIP? Not disabled. No benefit. 

And what of the claims that the government want to help the most needy?

What this means is that they will continue to give the benefit – the same amount of money, not an increased amount – to those who can’t walk more than 20 metres. 

But to all those who can only walk 100 metres (From a non-disabled space in the car park to the supermarket, but not inside the supermarket, and not the return journey to the car) – no help.
All those who can only walk 51 metres (from your front door, across the other side of the road and back again) – no help.
All those who can walk only 25 metres (from your front door, across the other side of the road, but not back again) – benefit cut in half.
All those who are too ill to cook a meal for themselves – no help. 

The government will give support to those who can’t walk 20 metres, this is true. 

But only if you come, once a year or so, to an assessment centre that may or may not have disabled access, run by an organisation (Atos) that has secret targets to keep the payouts as low as possible, (yet no penalty if their decision is found to be wrong at tribunal). You will then be seen for 30 minutes or so by a nurse or Occupational Therapist (doctors are expensive so kept to a minimum), who may have no knowledge whatsoever about your particular condition and the complexities of it. You better hope you look ill on the day. 

It will mean a continual fear of not knowing whether you will get your money. 

It will mean that the most vulnerable in our society will feel sick to their stomach every time that brown envelope comes in. 

It will mean a cut of £2bn on disability allowance, but an increase of almost £1bn to pay Atos to administrate these changes. 

It will mean 500,000 disabled people losing all of their benefit, just so that the government could say they were targeting scroungers and could then afford to give a tax cut to the richest in society.
 

This is what the changes will mean. Just so we’re clear.

John Pring's Weekly News Round Up

A disabled man has won compensation from the government’s “fitness for work” contractor Atos Healthcarebecause of the weeks of distress, pain and fatigue he suffered after being forced to attend an inaccessible assessment centre.

Another government minister has used misleading figures to try to whip up anger about the scale of spending on disability living allowance, in order to try to justify the coalition’s programme of cuts and reforms.

Fears are growing that the government could be preparing to scrap Equality 2025, the network of disabled people which advises ministers about the possible impact of new policies.

A Cornish politician who was forced to resign after suggesting that disabled children should be “put down” because they cost too much money to support, has decided to stand again for election.

The latest legal challenge to the government’s welfare reforms will “shine a spotlight” on the “injustice” of its new disability benefit, according to one of the three activists spearheading the case.

A union has disputed government claims that hundreds of jobs have been created for disabled Remploy workers made redundant through the coalition’s programme of factory closures.

One in four of the 36 Remploy factories that were condemned to closure last year are now helping to provide jobs for some of their former disabled employees, according to new figures.

A new survey will help build an accurate picture of how the UK is implementing the UN Convention on the Rights of Persons with Disabilities, and provide campaigners with ammunition when discussing policy with the government.

The two companies carrying out assessments for the government’s controversial new disability benefit look set to offer contrasting experiences to disabled people who undergo the tests.

John Pring's weekly Disability News Service

This week's welfare stories by the passionate John Pring. If you're sick or disabled and don't read it from John first, it probably wasn't news. For John's own site, you can bookmark : http://disabilitynewsservice.com/

The minister for disabled people has again been accused of using misleading government statistics to “stoke up antagonism”towards disabled benefit claimants.

The government has been criticised for cutting funding for the adaptations disabled people need to live independently in their own homes, just as it introduces its controversial new “bedroom tax”.

The attorney general is considering whether to ask the court of appeal to lengthen the prison sentence handed to a man who killed a disabled, gay teenager in an apparent hate crime.

Survivors of the Winterbourne View abuse scandal will soon have access to their own dedicated helpline, thanks to funding from the Department of Health.

Disability Campaigners make the Headlines - Watch here

Thanks as ever to Steve Sumpter (@latentexistence) for providing us with links to all the interviews Spartacii and others have been giving to counter the mis-information government are spreading today. 

Please click here to watch and listen: 

http://www.latentexistence.me.uk/replacement-of-dla-with-pip-in-the-news-08042013/

We also have this comprehensive list of other welfare stories from around the UK today thanks to  @allbigideas  

http://allbigideas.blogspot.co.uk/2013/04/the-day-dla-died-links-blog.html