Monday, 8 July 2013

The disability stats Government DON'T want you to see

H/T @WTBDavidG and @djmgaffneyW4

As sickness and disability activists finally hope to see IDS and others hauled before the Work and Pensions Committee for misleading statistics, it can sometimes seem as though the whole country has turned away, happy to lap up the nasty lies of a government and media intent on painting us all as "scroungers" and "skivers".

If only the DWP could brainwash a whole country eh? Well it turns out they can't.

Oh so quietly, nearly a week ago, the government snuck out this revealing little survey from the beginning of the year : https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/209931/ad-hoc-opinions-survey.pdf

In particular, this shiny little nugget on "Government Spending" (Go to tables 20-22) https://t.co/zMqiCqxdvd

When asked  "Would you like to see more or less spending than present on disabled people who cannot work? A full 46.7% would like to see government spend MORE or even much more. Just 4.1 % would like to see them spend less. 

As one might expect, amongst sick and disabled people, the figure is even higher, with a whopping 61.4% believing the government should spend more and just 2.2% believing the government should spend less.

And remember, these are, in the government's own words, "disabled people who cannot work" - the group so reviled and attacked by the Daily Mail, Daily Express and DWP ministers themselves.

When it comes to carers, responses are even more emphatic. The survey asks "Would you like to see more or less spending than present on benefits for those who care for someone who is sick or disabled (My italics. Please note they use our language now too!)

A whopping 70.6% would like to see more or much more spending on carers benefits. Just 1.8% would like to see government spend less. 

This chimes with a Prospect poll from last year in which just 11% of respondents supported cuts to disability benefits. http://www.leftfootforward.org/2012/02/the-benefits-britons-want-to-save-are-the-ones-the-tories-want-to-cut/

Isn't it odd how this government shout false statistics from the rooftops, claiming that "900,000 chose to drop claims for incapacity benefit rather than face new tougher tests" (When the real figure was just 19,000 and those people found work or got better) yet somehow, it slips their minds to mention that the public do not support the devastation they are inflicting on every area of the lives of sick and disabled people. 

I'd heard rumours about this data. Apparently, backbench Tories, are seriously alarmed by the implications, chiming with mailbags crammed with pleas from their sick and disabled constituents, some even urging the government to drop DLA reform. Fearful for their safe shire seats, already under unprecedented fire over Incapacity Benefit reforms and social care cuts, PIP was surely a "reform" too far? Is it purely coincidence that almost exactly at the time these findings were compiled, government announced that they would not be migrating those with lifetime DLA (Disability Living Allowance) awards to the new PIP benefit until after the 2015 election???

For me, this data shows that no matter how hard politicians try to smear one of the most vulnerable groups in the country, simply to cut support away from millions, human nature is what it is. We, the people simply aren't as cruel or cold hearted as those that attempt to control us from Westminster. 

Again and again, this government totally ignores the views of sick and disabled people. I have never seen politicians so arrogantly refuse to engage or modify their proposals. They slash their way through already desperately challenging lives, using media and fear to attempt to divide and rule.  

This data shows it hasn't worked and they proceed with their devastating agenda at their peril. 




Saturday, 6 July 2013

Glastonbury Gas! Gas! Gas! Part 3

Saturday morning and a quick twitch of the kitch camper curtains revealed sun!!! Glorious, glaring, Glastonbury sun, warm and happy, transforming everything to smiles and lazy, glinting opportunity.  Earth baked, not churned, skin caressed, not soaked, kaleidoscope colours vivid, not dull and grey. Everything transformed to the best it can be. A vivid version of psychedelic perfection. Shining just for us, blessing us with delirious warmth. There's no way I would have enjoyed things nearly as much without the sun.

Us Brits all endure long, cruel, winters with a kind of steely resolve, but if you're ill it becomes a battle of survival. Aches duller, pains more intense, fatigue more crushing with every grey, damp day. Harder to get out of bed, then harder to manage any pretence of life if you do. Cold seeps into muscles and bones, amplifying every shooting spasm. We hibernate, us poorly people, our social media family-friends becoming ever more important as days drag by in freezing, draining, unremitting grey.

Like sunflowers, we stretch and smile towards those first rays of summer, becoming stronger, brighter, happier. Take the joy you feel and multiply it by a hundred days of fear and hopeless acceptance.

I took my faithful blankie and stretched out cat-like on the grass, letting the warmth seep into aching bones, tiny denim shorts and silk halter neck allowing the warm breeze to gently search out skin like summer shocks.

Dave made bacon sarnies and fetched tea while I gently roasted. Neighbours emerged from canvas to chat and stretch, mugs of tea and toothbrushes in hand. Overnight, tents had been pitched on every spare inch of our field. A cow tent just inches from our boot, an awning jutting onto our driver's window.

I giggled at hangovers, smug as only one quite accustomed to feeling like death in the mornings can be.

In the green room, John Humphreys held court as journalists do. So familiar, yet strangely distant from us all. Ricky Tomlinson burst in, louder and larger than life. (I resisted the urge to beg him to say "My arse" but it was tough!) We were soon hustled on stage, back to the comfy leather Chesterfields and Humphreys fired the starting gun. Ricky burst into righteous anger, ranting about his treatment as a young builder years ago. He was arrested for striking back then, a larger than life warning of why we have to fight for what few rights we have left. A real life miner from the miners strikes - Ironically named Mr Strike reminded us just what happens when the state crushes the people. Flanked by union officials, PCS (Mark Serwotka) to my right, NUT to my left, I listened with no burning urge to butt in.

Humphreys assured us he was playing "devil's advocate" as he sneered and diminished, though nothing convinced me it was particularly devillish or all that advocatey.

When my turn came, I pointed out that "Union" meant coming together. Whether you paid subs to an official body, or like the Spartacus movement, came together voluntarily to oppose a great injustice, without "Unity" there is no opposition. It is only if we come together to show our will, the strength of our voices, the passion and determination to achieve change that we can ever win. Again, I got resounding applause and with relief, left the rest of the union debates to those firebrand men of my youth.

As Humphreys called thing to a close, I felt the adrenaline and energy of the last 48 hours seep away. I started to shake, I could barely get off the stage. Dave asked me questions but I answered slowly, as though from behind glass. I didn't know the answers, could barely make out the questions. He took me back to the camper, and tucked me into bed, quite accustomed to seeing the shell that is left of me when everyone else has turned away. I slept immediately despite the beats from every stage pumping in time with my blood.

An hour later, Dave woke me with tea and back to myself, we sat in the sun and smoked. As we chatted, I suddenly heard an oh-so-familiar voice, drift across the decades to my today "What a good year for the roooooses...." I squealed? ELVIS COSTELLO???? You didn't tell me he was playing!!! (Always blame the keeper of the Glastonbury app) We rushed into action and Dave attempted to rush my wheelchair through legions of happy bodies towards an icon of iconic proportions. The pyramid stage was busy, already thousands taking their places for the "main event." The Stones would be playing later and no-one was taking any chances. We "Excuse me'd" past languid bodies, beer drenched music-zombies and entwined lovers as "Oliver's Army" made a sea of humanity sing and bounce as one.

The viewing platform was already full. We'd been told that if we were to stand any chance of getting a spot for the Stones, we'd need to be there hours early. Dave is a HUGE Stones fan and no matter what may come, I knew I had to make sure he saw them. It was only 5.30 and they weren't due to finish til nearly midnight. 6 and a half hours on a viewing platform to see a band I don't really like much. But I like Dave. A lot. He's been through through the year from hell, never ever letting me down, managing whatever horrors life threw at us with a quiet care. If I could give him the Stones at Glastonbury, nothing would stop me.

Costello played on and stewards cleared space on the platform for more wheelchairs. The joyous sign language interpreters were there again, even more beautifully abandoned. More and more sick and disabled people arrived, thrilled and breathless with excitement. Stewards asked able bodied carers if they would stand at the sides to make way for more wheelchairs. Like Jesus turning the loaves and fishes into a feast, they somehow kept squeezing us forward, rearranging and cajoling until the platform was as crammed as the fields stretching away endlessly to every side of us.

Primal Scream played next. I thought I didn't like them, remembering wrongly the trancey noise of the Chemical Brothers. As they started to play, I began to think I might survive the 6 hours after all. They rocked, the lead singer slithering with languid Rock Star charisma, banged out tunes from my nineties youth. Spliffs were passed up and down the platform, whiskey flasks were shared, wine was poured from boxes designed to last the night. How very liberating to live, just for a few days in a world where pain relief is allowed, morning noon and night.

Dave fetched me a curry and some churros, sweet with cinnamon sugar. Dear God, when I die, can this be what heaven's like please? I had a sneaky suspicion the same plea was muttered by every individual making up a crowd so large it took your breath away. On distant hillsides, to the left, the right, behind and in front, people surged towards the Pyramid fields in numbers so vast it made me dizzy.

There was a long wait between acts for the Stones to take to the stage. But the sun shone and the atmosphere was all festival abandon and tipsy tolerance. A carer trying to make her way back to the disabled platform with vital meds got stuck in the crowds. In desperation she explained to a group of sunburnt lads who cleared the way like Moses parting the red sea. Shouts of "Let her through" illustrated the unity I'd tried to define just hours before.

It got chillier and more charged as the PA system teased with the promise of Rock Legends. At last, in a blaze of fireworks and light, Jumping Jack Flash blared out and for a moment we were all fans. A playlist so iconic could only unite in a way politics never could. We jigged and sang, as Mick strutted his 70 year old stuff like a preserved gazelle.

The early intensity gave way to musical riffs and lyrical twiddly-wank that lost me a little in the middle. I giggled at private jokes as the old boys had to take rests, cunningly disguised with guest musos and long bridges, but even I had to admit that they still "had it". As the lull took hold I looked out over the seething mass of bodies and suddenly turned cold. THIS is what 170,000 people look like!!! I'd spent the last three years trying to show the UK public what 500,000 people looked like. The number of disabled people who would soon lose everything under Tory "reforms". I felt sick. 4 TIMES as many people would soon be housebound, abandoned by the ignorant ideology of a tiny elite. I tweeted some crowd shots and tried to capture the rage I felt. To harness it and share it with a public as yet unconcerned.



The set drew to a close and "Jumping Jack Flash" brought us all back to why we were there. We were watching the Stones. At Glastonbury. It might be the last big gig they do together. 170,000 people sang and bounced as one.

Trying to leave the fields in a wheelchair was tricky. So many people, all surging in one direction, we were swept along, jostled and pushed from every side. But somehow it didn't matter. High on the drug of 1000 amps, we shuffled patiently towards freedom.

High on life, something convinced me it was a good idea to search out MORE fun. It was hours since I'd eaten and a cheeky little tapas stand offering chorizo stew and cous cous salad beckoned. It seemed like such a good idea at the time. As did the mojitos tempting like harlots from a crowded jazz bar.

We squeezed the last moments of fun from the day as it seeped away from us. Temptation caught up with me and exhausted, sick but triumphant, Dave pushed me back to bed........

Continued tomorrow......




Friday, 5 July 2013

LABOUR GET REAL ON DISABILITY!!



Well! Well! Look what just landed in my inbox!!! Are Labour finally getting real on sickness and disability? This is VERY important. We've been calling for a cumulative impact assessment for some time. If you want to know why it's important that government look at how ALL the cuts COMBINED will affect disabled people, please read this article I wrote for #Occupy http://diaryofabenefitscrounger.blogspot.co.uk/2012/08/what-is-overall-impact-of-cuts-to.html (reproduced in full at the end of this post)

Please do try to write to your MP and use the hashtag #makerightsreality on twitter to build pressure before the debate at 16:00 on Wednesday 10th July.

Maybe, just maybe all the meetings and emails and campaigning are getting through. Don't let cynicism stop you from getting involved, things WILL get better one day, We always have to keep believing that this will be the day.

Email from Liam Byrne : 

"Time to come clean

After more than three years in power, it’s time for this Government to finally come clean and tell us exactly what impact their changes will have on the lives of disabled people and their carers.

So on Wednesday 10 July, Labour will drag Ministers to the House of Commons to debate the changes they have made that affect disabled people, and at about 16:00 we will force a vote to demand a Cumulative Impact Assessment by October 2013 at the latest - and we will be calling on MPs from across the House to support it.

I am asking supporters to help build pressure on the government in three ways:

Write to your MP and ask them to back the motion
Write to your local paper and explain why we urgently need a cumulative impact assessment
Tweet your support using #MakeRightsReality – here’s the link to the motion
(http://liambyrne.co.uk/?p=4534)

This government is failing to support our disabled people. It’s time for Ministers to come clean, admit where they are getting things wrong and change course.

It’s time to start making rights a reality for disabled people.

Please forward this email to anyone who might be interested.

Here’s the motion in full:

That this House believes that the Government should publish a cumulative impact assessment of the changes made by this Government that affect disabled people (to be published by October 2013).

Yours,

Liam Byrne"

Here is the full text of my article on why we're calling for a cumulative impact assessment. Teh government have simply told us over and over that "They can't afford it" or "It would be too difficult" (I'm not kidding!) 


"This is a piece I wrote for Occupied Times, and they have kindly said I can re-produce it here :


"To do his schoolwork, the bare minimum Johnny needs is: paper, a pen, a teacher, a school, a chair to sit on, a desk to sit at, and a packed lunch.

If you take away just Johnny’s lunch, he will go hungry. It would be almost impossible for him to concentrate and do well in school. However, in theory, he could still do schoolwork.

If you just took away his desk, it would make it tricky to write, but Johnny could still do his schoolwork. It would just take longer and be less neat.

If you just took away his teacher, he could, in theory, go to libraries and museums to learn. In theory. Hypothetically, it’s still possible that he could teach himself something, so he could still do his schoolwork.


If you take away his paper and pen and school all at once, he can still sit on the floor and use chalk to write on the ground.

But if you take away Johnny’s paper, pen, teacher, school, chair, desk and lunch, all at once, Johnny is sitting on some ground with nothing, hungry, without a roof over his head. It’s hard to learn anything at all sitting alone, on the ground, with nothing but a piece of chalk.

Now imagine you have a disability or a long-term chronic illness. To manage it with a degree of dignity, you need a carer, a roof over your head, a bed, heating, food and transport. You rely on the carer, who comes in twice a day from social services, because she helps you to get up and get dressed and washed. Without her, you would have to spend all day, every day in bed. But at least you still have a bed.

Or maybe you rely on housing benefit to keep a roof over your head. You are forced to move to a smaller property on the 5th floor of a tower block when your housing benefit is cut. The lift doesn’t work. It means you have to move away from family and friends who help you out whenever they can. They cook meals perhaps, or help with all those jobs around the house you just can’t do.

But at least you still have somewhere to live.

Or maybe you rely on Disability Living Allowance (DLA) for transport. It means you can get a taxi to the hairdresser or social club. Without it, you would become isolated. It would be impossible to get to your GP or make hospital appointments.

But, in theory at least, you don’t actually need to go anywhere.

If, however, you cut Disability Living Allowance, housing benefits, social care, hospital budgets, the Independent Living Fund, Employment and Support Allowance (ESA), income support and the Social Fund, then you are just lying in a bed, hungry and isolated, a prisoner in someone else’s home.

Governments must perform what is called an “impact assessment” on any new policy or law. This government has done the bare minimum to fulfil this commitment. Would it surprise you to know, for instance, that when considering the greatest cuts to disability support in living memory, they claim that they will have no impact on health, no impact on well-being, no impact on human rights, and no impact on the justice system?

The crucial flaw is that they have independently assessed each cut to the services disabled people rely on, as if it existed in a vacuum.

The government has refused to do an overall impact assessment. They have repeatedly refused to assess what the combined impact of their cuts will be. First they said it would be too expensive, then they said it would be too difficult!

Why might it be too difficult? Because they know, as we know, that, metaphorically speaking, the result will be little Johnny sitting on the floor with nothing but a piece of chalk, hungry, without a roof over his head.

The combined impact of removing someone’s DLA so they can no longer afford care or transport, heating or food, cutting their ESA so that they must look for work with cancer or multiple sclerosis, cutting their local care support so that they cannot clean themselves or feed themselves, cutting their housing support so that they risk homelessness and, to cap it all, scrapping the Social Fund so that there is no safety net when all else fails, is a strategy so risky that it ought to be criminalised.

We call upon the government to immediately carry out an overall impact assessment of all the cuts to the support that sick and disabled people rely on to live. I’ll say it again – to live. And they must do it now, before it’s too late. Because it’s hard to survive, sitting in the dirt with nothing but a piece of chalk."

Glastonbury Gas Gas Gas! Part 2

Friday morning dawned cloudy but dry. After just a few hours sleep, adrenaline made sure I woke zinging and popping with excitement. I would be speaking on a stage at Glastonbury in less than two hours! The camper van was cosy - it even had a fridge, but we hadn't worked out how to do tea yet and a spoonie with no tea (well this spoonie) is like Cameron without his botox - just a facade.

The green room, a huge white marquee with red carpet, elegant drapes of red curtain and twinkly fairy lights was just across a bit of muddy field, so Dave and I set off nervously to hunt beverages. As we stepped out of the van, we practically fell over Tom Watson and a friend trying to put a tent up. I've met Tom a few times and he's always been lovely, but somehow, grappling with tent pegs is a great leveller. We traded tent-banter with the comparative smugness of those sleeping several inches off the floor and carried on towards the promise of tea. (Half an hour later, as we returned to the van, very little tent progress had been made and instructions had finally been resorted to!)

Inside the green room, there was indeed free tea, coffee, juice and fruit. The tables were strewn with packs of cards and chess boards for whiling away the hours between appearances. Owen Jones was sitting outside and a few journalists were hopping from guest to guest interviewing panellists and musicians. Caroline Lucas came and sat with us for a while as I puffed nervously on a last minute cigarette. As though it was the most normal thing in the world, I suddenly found myself hugged by Billy Bragg. Billy Bragg!! A hero of mine for so many years.

Before I knew it, we were negotiating the cables and boxes backstage to emerge into the Leftfield audience. One of the backstage guys rushed to get me a box so that I could get onto the stage and the comfy leather sofas waiting for us.

The subject of the debate was "Austerity" and Owen kicked off with his usual brand of passionate, evidence based opposition. John Robb, punk hero, was chairing as John Humphreys had been held up in London covering Mandela. Tom Watson went next. Poor Tom had the trickiest job. He tried valiantly to walk a party line whilst still opposing the Tory horrors ripping the country apart, but he seemed weary, unconvinced himself. As the audience and panellists alike urged more emphatic  opposition from Labour, Tom stuck to the cautious party line, but somehow I felt, with little conviction.

As my turn came to speak, I asked the audience to think for a moment about a group of people who are not allowed to use the front doors of 5 star hotels, but are made to use the tradesman's entrance. A group who may not eat in the same restaurants as them or travel on the same transport. Children who may not attend the same schools as theirs or enjoy the same theatres or cinemas. No, I wasn't talking about race segregation in 1950s Alabama but the lives of sick and disabled people in the 21st century, right here in the UK, right now. I asked them to look around the tent. How many wheelchairs or guide dogs did they see? How many had they seen elsewhere on the vast site? I warned them that they would see fewer and fewer as the government's austerity bit harder. That austerity was very real for some. Sick and disabled people would increasingly find themselves stuck within four walls, their only incomes stripped away. Who can attend Glastonbury if their only means of transport is taken away? Who could afford the tickets if just putting food on the table becomes an impossible challenge? Finally, I begged them to open their eyes and see what was being done in their name and if it sickened them, to DO something about it. Very British tutting would not be enough.

I got a resounding round of applause and took my first breath for about half an hour. The debate fizzed along nicely, with Tom Watson and Caroline Lucas arguing over how firmly Labour should oppose austerity and Owen chipping in with eye-watering stats and research. We took questions from the floor and most of them lamented the lack of a credible opposition when we need it so desperately. However, this was Glastonbury, not Westminster and one might expect the audience (particularly one who chose Leftfield over beer and beats) to be to the left of even a distinctly leftie panel.

After taking questions from the floor,  it was all over, the quickest hour or so of my life. Audience members mobbed us at the end to share congratulations or advice and Dave pushed his way through with my wheelchair to lead me away. (Incidentally, as we made our way back to the van, Tom's tent still wasn't fully up....)

I was buzzing with adrenaline and ravenously hungry - I hadn't dared eat before the debate in case the ghost of crohn's present reared it's head, making me vomit all over the audience. It was gone 4pm, the sun was peeking out from ever smaller clouds and beats from every stage took over heartbeats with their intensity. I squealed at Dave "Let's find some fun!!!!"

We decided alcohol was a necessity and Dave went back to the van to get me Pimms (I'd bought cucumber and a mint plant with me - I really don't do slumming it) I asked him to "park" me just outside Leftfield stage so that I could watch the kaleidoscope of humanity milling past. I love people watching anywhere but this was a whole new level. Wild outfits, incongruous hats, hair every colour of the rainbow, Grandmas and babies, Dad's in anoraks and self-conscious teens, too cool, yet not quite cool enough. As I sat in the sun, making a "cigarette" Billy Bragg marched towards me, all smiles and hugs. Had I had fun? Did I enjoy the debate? Still buzzing, I said it was wonderful and such an opportunity to reach a new audience. We chatted for a while, then he asked if I'd like to speak again the next day, this time on a panel with union leaders and Ricky Tomlinson. Thrilled, I said I'd love to and he strode of to his next session.

Dave soon came back with a carrier bag stuffed with Pimms and lemonade, beer and a real glass with slices of cucumber and scrunched up mint - he knows me so well. People smiled as we pushed our way through crowds, my grown-up drink spilling here and there over bumpy walkways.

We decided not to have a "plan" but just to meander from stage to stage and see whatever was on. It was surprisingly easy to get around in the wheelchair as walkways had been levelled with miles and miles of makeshift flooring. We trundled towards the Other Stage and Dave wheeled me up a ramp to the viewing platform.

I'd never been to this kind of event in a wheelchair before, but far from feeling like defeat, it felt like liberation!! We weren't restricted by how far I could shuffle on foot, there were no tears as I found I couldn't get back from a distant field. We didn't have to find somewhere I could sit amongst boisterous crowds when it all got too much. Every stage we approached had a viewing platform with a ramp and we simply rolled up onto them! They were close enough to have a decent view and there was always space and a friendly security person to help.

But the best thing about the whole weekend for me - I'm not kidding - were the sign language interpreters signing the lyrics of the songs. On every viewing platform, they danced joyously, wrapped up in the music, the signing gave their dance so much more power, as though every bit of them went into the song. I filled up with tears as they signed for a guy in a wheelchair who had totally lost himself in the music. He may not have been able to hear what I heard, but these interpreters danced just for him, and he thrashed his head in time to the beats, hair whipping back and forth. It was beautiful to watch.

We managed three stages in as many hours - I'm fairly certain even those with no impairments would have struggled to see so much. Don't ask me who we saw - they were all lovely. I did get the  name of one band, the Dub Pistols on the BBC introducing stage. LOVED them.

We meandered around in the sunshine, ate some thai curry noodles (they were delicious, none of your crappy food stand nightmares at Glastonbury) drank, smoked and were merry.

It's worth pointing out at this point that us spoonies could show the youth of today a thing or two about holding their drugs. On most viewing platforms I'd guarantee our prescription meds outranked their rather more illegal ones. Add in a pint or two, and they were lurching around the place with an unseemly lack of tolerance, while us wheelies and spoonies looked on knowingly, perfectly cogent on our morphine-and-gin or tramadol-and-beer.

Billy Bragg was playing his own set on the Leftfield stage at 9pm, so we set of through the endless crowds to get in place. Unfotunately, the stewards often turned out to be a little TOO helpful and in an attempt to show us shortcuts, often sent us in endless circles only to end up in completely the wrong field.

We got a little lost and I got a little crankly as my energy-spoons dipped. We finally got back, but I needed tea and a little rest, so we came in the back gate to the backstage area and the sanctuary of the green room. As Billy smashed out tunes to a thrilled audience that reached right back to the food stalls, the energy started to infect me. I started to revive, but the thought of fighting our way around to the front stage and the viewing platform wasn't so appealing. We asked the stage guy what our best chance of making it were and he smiled and said we could watch from backstage if we liked!!! I've never been backstage anywhere before, it was so exciting! There I was, just a few feet from Billy Bragg as he smashed out songs I'd known for most of my life. I turned around to find Phil Jupitus (turns out he's a mate of Billy's) singing along loudly in my right ear as Ranking Roger from the Beat strolled past outside. Get me!! Little old spoonie me who spent most of last year in bed, pleased just to be able to get to the loo!

I felt happy! Actually happy. Filled with joy and fun, I buzzed and managed a kind of wheelie-dance from my chair. I couldn't remember the last time I'd had fun, just plain old fun and it felt amazing....

Continued tomorrow..............

Thursday, 4 July 2013

Glastonbury Gas Gas Gas! Part One

This will be an unusually long set of posts for those who follow my adventures. I don't want you all to miss a moment.....

As most of you will know, Billy Bragg asked me to speak at the leftfield stage at Glastonbury. Every now and then an email lands in my inbox that makes me wonder if it's really for me at all. I mean Glastonbury!!! Who wouldn't want that opportunity? And Billy Bragg! Towering leftie icon who has peppered my life with sense and bravery, always telling truth to power.

I was so focussed on the speaking bit, it didn't really occur to me til we trundled up to the site in my mother-in-law's camper van that I was really going to be at Glastonbury! All weekend! Doing fun stuff too!

It's been a very long time since I had fun. As you know, I spent most of last year in bed, being sporadically cut open by well meaning surgeons. The pinnacle of my goals was to get to the bathroom. The thought of 4 days at Glastonbury with the cool kids was actually intimidating. People asked me if I was nervous about speaking. Nope, I always love that bit, but the idea of being cool, having fun, being away from my safety-net-bed - that was scary.  I thought of you all, my housebound or bed-ridden followers and many, many, times, I wished you could all be there with me. To feel the sparking excitement, the joy, the freedom of 150,000 people letting loose, leaving their humdrum fears and stresses behind. Creating utopia, even if only for a few days.

We arrived late after 2 sports days and a long drive to Devon to drop the kids with the in-laws. It was raining - who expects anything else at Glastonbury? And I started to worry how Dave would push the wheelchair if the whole farm mulched into a soggy, muddy quagmire.

That moment, as we pulled into the site! I muttered under my breath to you all. My God! Spoonies don't do this! This was the "Outside" amplified. Thousands and thousands of soggy ablies made a makeshift city of alternative colour. Tents peppered the hillsides for as far as the eye could see, flags and fairy lights proclaiming a new way. Or perhaps an old way that could never quite beat the capitalist, corporate grey of "real life"

I was struck by how mashed most people already were. As we tried to inch the camper through throngs of rain drenched bodies to the middle of the site, where Leftfield sits, people leant against the van, tried to climb onto the bumpers, shouting love and peace, stumbling and lurching in front of the van.


I had been worried about my clothes. More Audrey Hepburn in style than Courtney Love, I'd packed every random bit of non-prim cloth I could drag from my wardrobe and decided I might fit in if I just wore them all together. I needn't have worried. From middle aged men in Tigger suits to girls dressed as fairies, a guy in a wetsuit, a guy in swimming trunks and a pokemon hat - No-one cared, no-one judged. I could have worn my wedding dress and indeed, some did.


It was no good. The site was jammed. We had to turn back and a lovely dreadlocked soul called John guided us to another backstage area so that Dave could go to Leftfield on foot to arrange our access.

Alone, I sat in the van and looked out over the hills at the sprawling throng of alternative humanity before me. I was a little nervous without Dave, but I pulled myself up. It was a moment! How often do we stop and just feel the here and now? I was at Glastonbury! I was going to get the opportunity to speak about a subject I'm passionate about. I was out of the musty bedroom prison that had held me hostage. I told myself off. "Live it Sue, make the most of every moment. What's to fear but fear itself?" I spoke to my Dad, quietly in the gloom of reflected hedonism. I spoke to you guys. I spoke to no-one in particular.

Dave came back, muddy and triumphant to tell me that Sarah, the Leftfield organiser had insisted to every level of security that we must be let in. However, there was a traffic lockdown, and it wouldn't lift until 3am. It was midnight by then, so we sat and drank tea as the hours ticked by, soaking up the atmosphere.

I took a nap in the comfy, glamping version of slumming it that was all I could manage, as balls of fire shot from Arcadia and pumping bass beats sang a raucous lullaby.

At some point as I slept, security arrived and led me, like the Queen of Sheba, propped up on my pillows into the heart of the Glastonbury site. Lights flashed a warning, an escort of 4 or 5 more security guards on foot shouted a clear path and like the most vippy of VIPs, we were heralded into place.

The Leftfield site was right in the heart of the action. The Pyramid stage was just to our right, the Other Stage to our left. Arcadia behind us, John Peel stage in front of us. Even at 3am, it was a riot of noise and driving beats. I learnt quickly that Glastonbury never sleeps - who wants to miss a moment? Sleep's for sleepy people.

****** Continued soon....








Tuesday, 2 July 2013

Wheelchair petition, please sign & Share

If  we can't provide the right wheelchairs for people based on need, what's the point of calling ourselves civilized?

PLEASE sign this petition and share it with all your friends. Urge them to sign. We need to show that we DO care.

John Pring's disability news roudup



John Pring's weekly disability news roundup. He really has outdone himself this week. Pls share




John Pring
Editor: Disability News Service
Tel: 020 8446 5900, 07776 206595