Thursday, June 30, 2011

100 Voices

I have been invited to speak at the 100 Voices conference hosted by The Brandon Trust in Bristol on saturday. It's the first conference of it's kind, so that people with learning disabilities can choose what they want to be on the Brandon Trust agenda for the next 12 months.

If anyone would like to watch the conference it is being live streamed here and I will be speaking at approximately 10.15am. Expect lots of noise, bubbles and fun!

Sunday, June 26, 2011

Two Girls, One Wheelchair & 21st Century "Accessible" London..

It’s been a looooong weekend and both Sue and I are on our respective trains home utterly spoonless and exhausted. Having just found out my train’s massively delayed because the signalling equipment and cabling has been stolen it’s pretty much the final straw and there will be tears before bedtime.

I could tell you all about the politics and the campaigning we did this weekend, but the real story is in how we got around and what happened to us. The whole premise of the Welfare Reforms and in particular the new Personal Independence Payment is that now we have laws about accessibility, benefits aren’t needed in place of that. The edited highlights of two spoonies alone in London for a weekend go to show how very far from the truth that is and just how much needs to be changed for sick and disabled people to be able to compete on an equal platform in life, let alone the workplace.

The journey here was relatively uneventful, Scousers are incredibly helpful people so it was no surprise that a lady passing by insisted on helping with the case all the way through the station whilst my neighbour pushed me in the wheelchair, or that after several slightly dodgy jokes that the Burger King man sent me away with enough fries to feed a family. Assistance was booked, turned up and all went well.

Until we got to the hotel. The very pretty, but very, very inaccessible Hotel Russell in central London. The front entrance to the hotel is lovely to look at, as is much of the inside…but you only get that view if you can walk up a flight of marble steps. If you are a wheelchair user you get to go all the way around the block to the back of the hotel. There there is a delivery entrance with intercom… far too high up the wall for a wheelchair user to access. The videos speak for themselves, but for those who can’t see them the trip into the main hotel involves a hair raising ride on a pallet lift and trip through the kitchens, past the storage carts etc. According to the very embarrassed and apologetic staff members it was because it’s a listed building and that meant not being able to alter the front entrance. I would have considered that fair enough had there been ANY effort made to make a proper accessible entrance around the back of the hotel, but as they hadn’t it’s obviously just an excuse for ‘we can’t be arsed’. I was horrified to hear from other wheelchair users on twitter that they had had that exact same experience at the Hotel Russell three years ago and been assured it would be remedied when the hotel was fully refurbished, which it claims to have been recently. The only positive about the Hotel Russell was how lovely and helpful all the staff were. It’s obviously a frequent issue as on one of our tours through the bowels of the hotel we were introduced to the ‘big boss’ who didn’t even bat an eyelid at the wheelchair route we were being forced to take.

The accessible room was prettier than the route into the hotel…but it wasn’t exactly accessible. It was just a normal room with a decent sized bathroom and some grab rails. The contrast of the braille on the room number plaque made both Sue and I giggle, but the fact that we were completely unable to get in and out of the hotel alone did not have such a cheery effect. But, we’re spoonies so we made the best of it, ordered room service and got on with planning for our seminar.

Saturday morning we had to be at the Institute for Education bright and early. After a disastrous trip to the hotel’s business centre which the staff insisted had printing facilities we found three non functioning computers and a broken phone meaning we couldn’t call for help. So we set off for the Compass conference which we were assured was just around the corner….it was. But unfortunately we were directed the wrong way so by the time we arrived at the Institute for Education we were both knackered but Sue who’d been pushing me was beyond exhausted. I don’t think we can thank Left Foot Forward and particularly Dan Elton enough, not just for taking a chance and hosting a seminar about welfare, but for being able to cope with two hysterical women, one sobbing, one shaking and get us calm and organised.

After all that we decided to sit out the morning’s main speeches, we were just too tired and sore to even contemplate it and just took it easy until our seminar time. We’ll post separately about the seminar, but suffice to say it was described as the most interesting seminar on welfare ever. Which obviously has nothing to do with the crawling under a table or shoeless presentation style.

Sue sensibly went for some lunch and a lie down after that bit, but there was another lecture I wanted to see and so the very kind Neil Coyle of Disability Alliance took over as wheelchair pusher. Although I’ve got some mobility the conference centre was too big for me to move around so I was dependant on whoever I could find to charm/bully into pushing me around…including a member of the House of Lords….thanks by the way Lord Glassman!

Eventually we were done seminaring, speeching and politicking and all decided to head off to the pub. I’d like to thank Declan Gaffney for pushing me around so much of the day…and to say I hope he’s recovered from the trauma of launching a small, bendy wheelchair using woman out of the wheelchair and onto the kerb in such spectacular fashion that even in London people stopped what they were doing to gape open mouthed at the sight. I giggled when I hit the floor…because that’s my response to hurting myself, especially in public and was so panicked about being on the floor with the wheelchair sticking into the road that all I could think about was that. Declan managed to scoop me off the floor and off we went. It was only later when the adrenaline wore off and the pain started that I realised I’d dislocated my whole femur from the combination of force from hitting the supposedly lowered kerb and falling onto my left knee. There were copious amounts of prescription and non prescription medication consumed after that!

Sue and I were completely incapable of returning to our hotel alone after that. We’d both like to thank the fabulous Charlie Covell who took over as chief wheelchair pusher, got us back safely and went off to buy us dinner to eat in our hotel room as we couldn’t possibly have gone anywhere or done anything.

This morning we had to again brave the terrifying pallet lift, but were helped by hotel concierge Steven who organised things so well it wasn’t as much of a problem for myself and especially Sue. The cabbie went out of his way to help us and dropped us off at what was supposed to be the easiest entrance to Euston. And it was…just a few steps in and we spotted a staff member wearing a Virgin Trains uniform and asked him to get us some assistance.

So…the man pushed us into what we thought was a broom cupboard, closed the door on us and went off, claiming he was going to get mobility assistance to help us. We sat there a bit bewildered but not as confused as the poor man whose tradesman’s office it turned out to be who was very surprised to see two women, one wheelchair and luggage parked in his office. He chatted away to us until it became clear the other man had literally dumped us and not even bothered to let anyone know we were there. The gentleman insisted he would take us where we wanted to go himself and was joined by an incredibly apologetic employee of Virgin Trains called Justin Stockwell who could not have done more to help us if he’d tried. Justin and the other man pushed me and Sue out to the place we intended to eat at, made sure we were safe and arranged to meet us himself at the mobility assistance place and put me safely onto the train.

Which is when Sue and I hit our final straw. Exhausted, hungry, in pain, unwell and verging on tears we both desperately needed to eat, but I’d managed to pick a place that Sue couldn’t eat the food at and I couldn’t eat at any of the places we could see. Somehow, neither of us know how we managed to stagger to an adjacent place and order some food in time to gulp it down. But that was it, we didn’t even have the energy to manage to get ourselves, two cases, two laptops and a wheelchair back into the station.

Fortunately Sue spotted a British Transport Policeman who came to our rescue and pushed me in to meet Justin so that Sue could get her taxi.

I was escorted onto the Virgin train by the still apologising Justin and the lovely transport policeman and upgraded into first class. The train manager and Justin explained how to make a formal complaint and said they will be too and made sure I was safe as did the policeman before leaving.

Just imagine trying to be fit enough to go to work every day when you're already sick and/or disabled...and then going through that kind of  performance to get anywhere. It's what the Welfare Reforms are banking on us being able to do...

Friday, June 24, 2011

Fit For Conference?

It's a big day today. Left Foot Forward have invited myself and Sue Marsh to be part of their seminar panel at the Compass Conference 2011 - Building The Good Society.

Being spoonies....our plans haven't exactly gone to plan so far...

As of yesterday we still didn't know if Sue was going to be well enough to travel, let alone string a coherent sentence together on Saturday morning. Crohn's + virus + chest infection + antibiotics + steroids = Sad Suey. This presented us with a slight problem, whilst either Sue or I can cover the subject as a whole if necessary Sue was also appointed chief wheelchair pusher. If she wasn't able to make it to London I was in trouble...especially when it occurred to me that alone I don't have enough mobility to make it in and out of the hotel. Fortunately Sue is well enough to make the journey, just in time for my ability to travel to be in doubt.

At six thirty this morning I gave up on the idea of sleep altogether and started to vomit up the medications I'd spent all night throwing down me in the hope they'd induce sleep. By 7.30 Sue and I were on the phone doing our 'oh god' routine. It's never a good sign when all you can say is 'oh god' and 'huh?' particularly when those are interspersed with puking breaks.

The thing is...we've been really sensible me and Sue. We've known this date was coming for weeks, we've planned to travel the day before, spent the whole week resting in preparation and employed our specialist disabled organisation skills to the max to ensure everything runs smoothly. Whilst we might be able to control bookings, what we want to say and how to say it, the one thing we simply cannot control however hard we try is our own bodies.

And this is really what 'fit for work' with a fluctuating chronic condition means. I might stop vomiting in another half an hour or so and be tired but fit to travel. I hope so, I usually do. But on the other hand I might not. And there's no test in the world that can change that, no possibility of health improvements to reassure an employer, it just is what it is. None of us with these variable conditions can control them, whatever the latest trendy biopsychosocial model of "it's all in your head" the DWP have snatched upon as proof we can be removed from our benefit dependancy and forced into jobs that don't exist. Day by day we just don't know and can't control our conditions. So really....should an employer be expected to?

Sue's version here

Monday, June 20, 2011

M'Luds Won't You Help Us With Welfare Reform?

As the Welfare Reform Bill moves from Parliament to The Lords, I sing (yes sing!!) Janis Joplin-With-Flu version of "Oh Lord, won't you buy me a Mercedez Benz"
Did you ever see a singing rights campaigner with hair this bad?





Lyrics

M'luds won't you help me, with Welfare Reform?
The sick need protection, their facing a storm,
Worked Hard all our lifetimes,
Paid tax since we're born
M'luds won't you help me with Welfare Reform?

M'luds won't you help me, to make people see?
The wall built around us by distant MPs?
We're tryin to help them, but will they help me
M'luds won't you help me to make people see?

M'luds won't you help me to keep people safe?
To live home and free with means to escape
The four walls that bind them
May keep them in chains.
M'luds won't you help me to keep people safe?

M'luds would you see them pushed onto the streets?
No hope of redemption, No way to compete?
No more hope of working
With nothing to eat.
M'luds would you see them pushed onto the streets?

M'luds are we worthy of all you hold dear?
Free speech, human rights and a voice you can hear?
The sick and the poor Lords,
Are living in fear.
M'luds are we worthy, of all you hold dear?

Written, sung and produced by Sue Marsh, diaryofabenefitscrounger.blogspot.com

Thursday, June 16, 2011

I Met a Man; or Hell in a Handcart

Inspired by "I met a man" blogger FlipChartFairyTales has written this fabulous poem

I met a man who met a man who met a man who said,
“My work-shy next-door neighbour is a-swinging of the lead,
He says that he’s disabled but I know that limp’s a fake,
He’s not really sick, he’s just a shirker on the take.”

...read the full poem here and share any additional verses you feel inspired to give, or perhaps someone would like to set it to music?

Update: Doug Shaw has done this great country version of "I met a man"

Tuesday, June 14, 2011

The Labour Welfare-Rollercoaster - Ed, Liam and Frank.

 By Sue Marsh

Well, those politicians put us through our paces yesterday didn't they?

The tension surrounding the much trailed speech from Ed Miliband on "scroungers" had us all on tenterhooks for hours. Twitter was frothing with Labour tweeters, sick and disabled tweeters, and journos all debating the merits of even going down the scrounger route to begin with.

As the transcript was posted on Twitter, I think there was a collective gasp of horror. Not from all, but from the sick and disabled. Those of us hoping to hear a different tone on sick and disabled people were in for a shock. We were the scroungers, the "irresponsible" society Mr Miliband wants to root out. Of just two examples he gave that "summed up" how society had failed under Labour (the other was sickening abuse and torture!!) was "a man on incapacity benefit with a real injury who cared for his children" who, nonetheless, Ed somehow knew could be working. He then went on to use this example as someone "not showing responsibility" "shirking his duties" "abusing the system because he could work but didn't" "ripping off our society" he was not a "good citizen" he was "abusing the trust of his neighbours"......

He then went on to say ""We should not demonise people anywhere in society" which seemed as though it had fallen onto the page from another speech. "I'll say no more" as Ed seemed to like to say.

From the moment Ed took the leadership, this was the one policy he felt he could support the coalition on unquestioningly. http://diaryofabenefitscrounger.blogspot.com/2010/11/take-time-to-listen-and-learn-douglas.html I shouldn't be surprised that despite months of carefully and constructively trying to point out why ESA is failing, how it needed to be changed, why talking about sickness scroungers would only make it harder for those who were unwell or disabled to get work; yesterday we got our answer. Of all the scroungers, drug dealers, scallies and cheats Ed could have used as an example, he used us. From the very first paragraph. Wow.

But I didn't have time to rant and rage (which was probably just as well!) because I'd booked a place at the Progress event in London with Liam Byrne and Frank Field. I wanted to roll up in a ball and feel miserable. I wanted to lick my Labour-inflicted-wounds and give up, but I got on the train trying desperately to keep my mascara on my eyelashes, not dripping miserably down my cheeks.

I got to Victoria, bought a homeless crip a Pret sandwich in an act of defiance against Westminster council and wandered towards Parliament in the sunshine.

The meeting was in Portcullis House, that macho glass symbol of political opulence guarding the Thames. Slick suits and teeny weeny microphones and testosterone filled the small room. The panel, including Liam Byrne and Frank Field assembled and each spoke about the challenges of welfare reform. Responsibility was again the theme and to me, it felt like they were trapped in a nightmare of indecision. Must be tough but not quite sure why. Must reduce the welfare bill but not quite sure how. Must make the system fairer but little understanding of what "fair" might look like. It was depressing, safe, tinkering. I can't actually remember much of it, though the idea of re-enforcing the contributory principle was by far the most thought out and developed theme.

When the talks were over, questions were invited from the audience and I was primed with injustice and ready to go.

"Sue Marsh. I write the Diary of a Benefit Scrounger Blog and I'm Political Strategist for the Broken of Britain campaign group.

(Byrne grinned in sudden recognition and nodded)

"Employment Support Allowance is an abject failure. And it's a Labour failure. It's a failure because you took a work programme for able bodied people and tried to fit it to the sick and disabled. They are just 8-12% effective. You didn't engage business and explain why we could be an asset to them. You didn't look at flexible working schemes or business co-operatives. You simply asked how a business place might be modified for a physical disability, never how a working life might be. My question is : Will Labour admit that ESA is an abject failure and work on policies to change it?"

Byrne was genuinely listening. He asked me if I thought sick or disabled people would have liked support to set up their own businesses, and I referred to some of the suggestions that came up most when you all took part in our consultation http://diaryofabenefitscrounger.blogspot.com/2011/05/welfare-for-people-by-people.html

-Genuine Flexible Working
-Help to set up micro businesses
-Re-Training or Further Education
-Support in work - for employers and employees that really works with our independent needs and acknowledges the extra time off we might need.

He answered that "it was probably a fair critique". He said Labour came too late to realise any of that and though they started to put a fund together, it was too late and they lost power. I don't know anything about that, but I genuinely got the impression that he knew about this stuff. He passionately and personally opposed the Time Limit and he repeated the line that "We should be pushing the unemployed into work, not pushing the sick and disabled into poverty."

Frank Field answered that "if job seekers spend just 8 minutes a day looking for work they don't have the intelligence to set up their own businesses. You might say we're kicking the wrong target but they just don't have the intelligence."

Earlier I'd tweeted "Field talking now, I feel dirty" and with that answer he confirmed my disdain in a blaze of glory. I imagine he either misheard me and thought I was talking about the unemployed or he entirely links those "on the sick" with "the feckless work-shy." Either way he's a plum.

A ripple of "Huh?" went round the room and Byrne seemed to give him a "Huh?" frown too. Or it could have been an interested frown. Or indigestion. Who knows?

After the meeting Byrne said he read my blog. I'm sure he doesn't. But I think he almost left me with the impression that he might have. Or even that he might actually realise that some of us exist. Or maybe he's just got a nice twinkly veneer over a scrounger kicking soul, it's so hard to say isn't it? He did ask if I'd send him our consultation and ideas though, so I will.

We're used to being ignored by politicians so nothing ventured nothing gained eh?

The politics of "I met a man"

"I met a black man in his 40's who'd been in the Royal Navy for 30 years"  was a (paraphrased) refrain from David Cameron during the Leader's Debates last year. Now, it seems Ed Miliband has met a man too. Unlike David's man, Ed's wasn't a hard working member of a minority group who'd been serving in the armed forces longer than he'd been an adult. Oh no. Ed's man was a 'scrounger' A good man, a man who wanted to do his best by his family, but still a scrounger whom Ed, without any medical qualifications, training or experience feels able to inform the nation could work if he felt like it.

Maybe he could work, maybe he can't. In this sense it doesn't really matter - using an IT company to administer so called 'fit to work medicals' which are nothing more than government decided descriptors is no more accurate than using Ed's lack of medical expertise to decide upon people's fitness to work. Something that Liverpool MP Steven Timms could have told Ed had he bothered to ask. There are already over 1000 genuinely sick and/or disabled people in Merseyside who've been refused sickness benefits despite being too ill to work. Despite poor mathematical skills and the lack of Ed's research team, even I can work out that will extrapolate to 10's if not 100's of thousands of sick and disabled people being refused the benefits which they have paid for via national insurance across Britain.

Issues of benefit fraud and welfare dependancy are important to tackle, none hate benefit fraud more than those forced into a position of genuine reliance upon the benefits system. The increasing scrounger rhetoric is terrifying to those of us knowing that no matter how much we wish to work, how much we try, not only is the system stacked against us, but that the health issues we face are inescapable. Whilst some small steps have been made by Labour MP's such as Liam Byrne to separate out the sick and/or disabled from the unemployed, it's such a quiet statement against the torrent of abuse heaped upon sick and/or disabled people by the wider media and political climate it leaves room for the one message Labour sent to the electorate via Ed Miliband yesterday.

Incapacity benefit claimants are irresponsible scroungers. Even when they're actually decent, honest, have worked, become genuinely incapacitated and are now trying to bring up their families as best they can, they're still scroungers who should just try harder.

The detail of the rest of the speech didn't matter. The message was hammered home in the first paragraph. The Labour party, the party of the people, the party of social justice, led by Ed Miliband are more than happy to be seen as the party demonising disabled people.

As the 'reformed' Work Capability Assessment originally introduced by New Labour continues to deny benefits to genuinely sick and/or disabled people, and the press slowly move away from sensationalist scrounger stories to reporting more and more genuinely ill people being denied benefits, Ed's slam a scrounger policy will undoubtedly return to incapacitate him.

Sunday, June 12, 2011

BBC Radio 5 Live - Disablist Abuse On Public Transport

Link to last night's Steven Nolan show discussion about the levels of disablist abuse on public transport. Discussion starts about 1h 39mins and the Libertarian Alliance speaker trying to tell disabled people how bitter they obviously are has to be heard to be believed!

Friday, June 10, 2011

Girl Talk – Spoonie Style Snippets

By Kaliya Franklin and Sue Marsh


“How’s it going then, is he lovely?”
“Yeah, very”
“And did you manage the sex ok, not too many dislocations?”
“Yes - plenty. But it didn’t get in the way, which says a lot about him”
 “Excellent” 


“What are we going to wear for this posh London conference?”
“I dunno – something smart that won’t show the marks if poo my pants. What about you?”
“I dunno – something smart that won’t flash my knickers to the whole room if I dislocate my hips”
“Sweat pants and trainers then?”
“Yeah – do you think they make them in the style of a suit?”
“They must do - the jegging version of workwear”
“That’ll work…and hey, we’re not well anyway. They’ll expect us to be in our pyjamas”


“How did you know he was the right man for you?”
“ I tried to hide my condition from him, but he insisted if we were going to be together he had to know”
“Aww. He’s such a sweetheart”
“Yep. A couple of months after we got together I was really sick and in hospital. He slept outside in a camper van for weeks taking shifts with my dad while they both worked full time just so they could make sure I didn’t die of malnutrition in hospital.”
“Wow. No wonder you decided he’s a keeper!”


“I got dragoned by the receptionist”
“Didn’t you tell them the doctor put a note onto the screen so that this situation wouldn’t happen?”
“Yes, she just wouldn’t listen to me. Said it won’t be til 5pm and that’s that”
“That’s awful”
“Why, why does pain never matter ?  What if at 5pm I phone and he hasn’t written the prescription. It’s Friday. I’m living in fear now for the next 6 hours hoping that some benevolent doctor will put me out of my misery for the weekend.”
“That’s if the doctor even knows you need a script, did the receptionist say she’d pass it on?”
“Yeah, but she didn’t really listen to anything I said. I feel totally helpless now. I hate it when they do this. It’s really hard cos it’s a new surgery. I’m scared they’ll think I’m a rabid drug seeker and write me off. I’m just so scared now. I’m usually such a feisty chick and Dave’s role is to reel me in. But I so fall apart in these situations I just can’t deal with it and he has to. Because he hasn’t got the terror you see. There’s nothing you can do to keep the plea out of your voice, you can’t be the person you usually are because they hold your life in their hands completely. He can use logic and sense; I just get paralysed by fear like a little rabbit in the headlights.”


“What happened last night love, are you ok?”
“Yeah. It was steroid rage. They quadrupled my dosage and even Ghandi would get mood swings on that high a dose of steroids.”
“Any my face looks like a football, it’s not me when I look in the mirror and I hate it”
“You are down aren’t you love?”
“Yeah, there’s nothing worse than this for me. If that receptionist had just said ‘no problems sweetheart I’ll make sure he does it, I would’ve been ok’. But now I feel like I’m undeserving and worthless”


“I’m so happy. I’ve got an outside tap. I know I’m sad, but really it’s the most exciting thing that’s happened in weeks”
“Did your landlord sort out the other issues”
“Yes! I’ve got a spacker plug for my sink. I’m so happy. I’ve been here nearly a year and now I can use the sink”

“I reckon the new government tactic on dumbing down our protests will be to make sure we both end up in the support group so we’ve got nothing to complain about”
“It’ll be like, ‘hey look everyone, the system does work fine, we were wrong, woops, sorry’”
“Yeah. That’d be good.”
“ Ain’t gonna happen though is it, you have to present your death certificate at the WCA to go in the support group"


“I actually managed to do some housework this week”
“Wow, that’s good. Well done”
“My bedroom’s still knee deep in clothes and my oven still has a year’s worth of pizza crust to scrape up. But hey, I washed up and at least it’s made me feel a bit less panicky that my entire life’s falling around my ears”
“Don’t worry love. There’s still bits of chilli plastered to my wine rack from chilligeddon”


“By time I left my old surgery I was really good friends with the receptionists and the pharmacists and that’s half the battle. Because if they don’t want to help me and trust my judgement it doesn’t happen. Sometimes even the pharmacists would go through to the doctor, they never judged me for using pethidine. But I haven’t got that trust at my new surgery yet. I haven’t shown them I can be trusted, that I don’t drug seek, that I won’t lose my prescriptions or do anything that makes them even think I might be drug seeking.”
“ Yeah, I know what you mean. I’m so fortunate that my GP keeps me set up for pain relief at home so I never have to go to A&E for pain. And the receptionists know my voice on the phone so they always ensure I get seen or prescribed for that day”


“How’re the kids doing at the moment?”
“6 yr old told me I needed to put on a tiny bit of weight. And then he said, not so you’ve got a tummy like daddies, but just so you don’t get so poorly mummy.  I told him, but darling, that’s kind of what Crohn’s is. Even when mummy eats a lot and you do see mummy eat lots don’t you. My tummy doesn’t get all the vitamins yours does, that’s why mummy gets to eat so many cakes but won’t let you”


“I got interviewed the other day about political aspirations”
*laughs*
“Oh sorry, I didn’t mean it about you. But the thought of a spoonie with political aspirations. I mean the whole system’s against it. Remember our quadruple SpAd job share idea? We decided in equality terms it would take 4 spoonies for every Oxbridge SpAd. “
“And that’s before we even get on to the skeletons in our closets just from leading vaguely normal lives, there’s no way I could be an MP. “
“But…if you’ve got no skeletons in your closet you’re too weird to be a politician anyway”
“Yeah. Shame it’s not Italy where the more rakish you are the more successful you become in politics”
“Definitely. We could cover rakish. It’s just the fit for work bit we’re not so hot on”

“So what’s on the to-do list then?”
“Oh you know, the usual. Bringing down the government, radio shows, articles to write, threats of suicide emails to answer.”
“Then there’s that speech to write.”
“Which speech is that again?”
“The one for parliament that we’ve been planning for three weeks. Remember? The one we spent a whole day writing and at the end of it you asked me what it was about.”
“Oh yeah. What is it about then?”
“I can’t remember. Too much pain… Think I’d better go sit in a corner and rock”
“Yeah, deathwalk time. Then I’m gonna sit in a corner and rock too”
“Bye love”

"Me again! Lovely doctor just phoned me, asked how I was. Said she'd chase up my new chemo drugs and left a pain prescription at reception for me. Panic over"
"Yeay. Happy Ending!"
"Bye"

Thursday, June 09, 2011

Really? This Passes For Parliamentary Research? By Sue Marsh

Well, well, well, look what I've found!!

After weeks of asking and several Freedom Of Information requests, I've finally unearthed the "assessment" the DWP did into Time Limiting ESA!! Clearly I use the word assessment in much the way ATOS do. In other words, pick a policy and then write some stuff that proves what you want to say. http://www.dwp.gov.uk/docs/esa-time-limit-wr2011-ia.pdf

Just in case, in the very unlikely event that you are not an uber-geek like me and you can't stay awake long enough to plough through 16 pages of fairy stories, here's a quick summary :

-It overwhelmingly affects the poorest most. The % impact falls from the highest in the 1st decile of earnings to the lowest in the 10th.
-It estimates that 60% will simply switch to income based ESA and not be affected. This is absolutely ridiculous, pie-in the sky rubbish. I have absolutely no idea how they can make this claim.
- The report concludes that over the term of the parliament 90% of those placed into the Work Related Activity Group (WRAG) will be affected.
-ALL groups will lose income on average through this measure.
-It is based on an assumption that 50% of claims will be appealed!!! How are they able to go forward with a system this inaccurate?
-The report itself claims that 700,000 will be affected by the Time Limit - a figure previously hotly debated, ranging from 400,000 to 1 million. It is expected to cut benefits for those not fully fit for work by 1.2 billion per year.
- The report acknowledges, just as I've been warning, that this is a disincentive to work and may push couples into divorce or into giving up on work altogether. However, they admit that they have no idea how significant this will be.


Possibly the most astonishing part is the claim that the Social Impacts did not need to be investigated, neither under the categories of Health and Well-being, Human Rights or the Justice System. (It does go on to say that an equalities assessment was carried out, which I will do my best to unearth)

As far as I can tell, the research is deeply flawed, based on inaccurate assumptions, incomplete and surely, illegal. If you discount the assumption that 60% will simply move to income based ESA, which I believe is just not true, it is a damning look into what passes for parliamentary research in our so called democracy.

Sitting Targets For The Government's Welfare Reforms

In today's Society Guardian 

Please read, share and leave a comment. The more popular articles about disability are the more get commissioned, thank you.

Thursday, June 02, 2011

What's Your Favourite Rescue Story?

During my 'getting to know you' consultation exercise of the local pavements I think I've been rescued by almost all of my neighbours and an assortment of kind strangers, who, contrary to reputation are not all male. In fact so not all male I have a (mostly) female rescue story to tell from a couple of weeks ago which doesn't technically involve the police in an official capacity either.

As there's so much gloom, doom and despondancy about at the moment I thought it might be a fun idea to share our favourite rescue stories; the good, the bad, the sad, the funny, whatever you like. Leave the links in the comment box and I'll put them up at the end of this blog..

So, back to my unusually female rescue. I sort of found myself sat on the pavement next to the post box about 100meters from my home. Sat is probably the wrong word, slumped in a floppy heap probably describes it better. Fortunately it wasn't too cold as there was no way I was getting off that pavement without someone big enough to fully lift me. Unfortunately all the neighbours were out and poor Roland was 20 minutes away snuggled up in bed with his girlfriend until he got my phone call.

It's very quiet where I live so it was a good few minutes before an older lady appeared to use the post box. She chatted away with me quite naturally considering I was slumped on the floor like a drunk in the middle of the day and she was unblocking a post box before moving onto asking what I was doing there.  I explained I couldn't get up, that help was on it's way and managed to ward off her attempts to help me. I might not weigh much but being so floppy makes me a dead weight and she wasn't exactly the youngest of older ladies so avoiding either of us needing a hip replacement seemed like a good plan.

Having insisted on giving me an umbrella to keep me company on the pavement the lady set off home as she was fretting I was cold. Actually, this is a shit dull story and the only funny bit was where she wrapped me in a dog blanket which nearly tripped Roland up when he tried to lift me....

So, it's over to you. My favourite rescue story isn't technically a rescue story but an avoiding arrest story, what's yours? 

Wednesday, June 01, 2011

Imagine You're Four... #panorama #dla

Imagine you're four. You love your parents, your friends, the way the light comes through your curtains early in the morning, twinkling on the walls while you wait in your princess room patiently for mummy and daddy's wake up time. Your favourite things are pink ballons and fairies, when it's all a bit confusing around you you know you're safe as long as you can catch sight of those pink flashes and know mum and dad are close. You love to give cuddles, hugs so tight there's no room to wiggle and when you get excited you rock back and forth from foot to foot, arms spiralling joyfully.

One day a new clipboard lady comes to see your mum and dad. You see them cry and decide you don't like this clipboard lady, you wonder where the clipboard lady you remember has gone. Mummy and Daddy are sad so you hug them then fling yourself to the floor and scream so the clipboard lady will go away. It works so next time you decide to scream louder and kick your feet harder to be sure she'll go before your mum and dad cry.

Next time the clipboard lady comes with lots of other people to take you away. Lots of big words you don't understand like 'aggressive' 'confrontational' and 'care order' float around the room and you can't see your pink balloons so scream and scream. Mummy and Daddy cry and tell you to be a good girl, that you'll love your new home, it'll be full of your favourite things to do, they'll come to see you soon.

When you get there it's all scary and wrong. It smells funny and the light doesn't wake you up in the mornings anymore. No-one knows you like to be woken up by the light and they wouldn't care if they did. The days are long, no painting or ponies like you're used to to fill the time and no-one comes to give you cuddles when you're sad. You cry alot and have tantrums. You're used to pink balloons and fairies when you have a tantrum, but without being able to see that you just kick more wildly, especially when the carers come to sit on you and hit you.

You might be only four but you can remember the important things Mummy and Daddy spent 18 years teaching you. You know how to hold out your hand and say 'NO!' in a loud voice if someone tries to touch you, to say the police will come to look after you, to call out for your Mummy so she knows to come to you. Mummy and Daddy were so proud of you for being their big girl and learning these skills, you try to remember that as you lie on the floor of your shower, surrounded by grown ups shouting at you, throwing cold water all over you, sitting on you and choking you. You cry and cry for your Mum but it just makes the carers hit you more. Sometimes the nurses come along and you look at them while you're on the floor, pinned beneath a chair, but then someone puts a blanket over your head so you can't look at them anymore. The blanket's brown and scratchy and you cry for your pink balloons while they hit you some more.

You don't get days out anymore. There used to be a car and Mummy and Daddy took you places with swings and slides. Swings, slides, light through the leaves and being happy slip further and further away until you're not sure there was ever a world beyond beige walls with no pink to hide in to bear the slaps, pinches and pushdowns that are your new routine. You're sure you remember your parents though and cry for them every day. You don't know the reason they can't come to visit is that now you're a hospital resident 80 miles away from home and the car had to go because you're no longer entitled to the mobility component of Disability Living Allowance and the Motability scheme. Mummy and Daddy are getting older and they had to care for you instead of going out to work. You don't know they're going cold and hungry now they're unemployed not carers, you only know that no-one comes to see you except the people who hurt you.

You don't know someone in the hospital did care. That they reported the abuse you are experiencing repeatedly. To their manager, to their manager's manager, to the Care Quality Commission. You don't know because no-one did anything, nothing ever changes now, the torture is your daily routine. You don't know the word for torture, but you could give a better account of what it means than a prisoner in Guantanamo.

You don't know that in the world outside your torture chamber that people talk alot about double funding, scroungers and fraud. Of something called a deficit, the need to cut costs and protect the vulnerable. You don't know that because all the talk is of stamping out fraud and you're so vulnerable no-one knows you exist.

TF1 News wants to interview you #wca #fitforwork

TF1 News, leading French television, is doing an news piece for its weekly prime time news programme on the Incapacity Benefit Reassessment.

Plans to reassess people who receive incapacity benefit to check if they are "fit for work" started last month. The first letters were sent out asking some of the 1.6 million incapacity benefit claimants to submit to reassessments.

Charities have voiced concerns that the test for people on incapacity benefit is unfair.

We would like, with your help, to meet film and interview people who had Work Capability Assessments and were refused the Incapacity Benefit. Preferably in London or Greater London.

The aim of the story is to explain our viewers this news system and its impact on disable people.

TF1 is France’s premier broadcasting network and broadcasts to some 500,000 Britons currently living in France.

Regular correspondence from our British viewers highlights their interests in and demand for information on the UK, which we provide. Furthermore, there are approximately 300,000 French people living in London, around 400,000 in the UK as a whole. In addition, TF1 broadcasts globally to the French speaking world (Belgium, Luxembourg, Monaco, Switzerland and North African countries).

It has frequently been noted that the London bureau of TF1 promotes, through its balance and professional reporting, many positive aspects and developments within the UK to our worldwide audience.

Should you require any further information, please do not hesitate to contact me.

Yours sincerely,

Gaetan Lecointe
News Producer
TF1 News  French TV
Michelle House
45-46 Berners Street

London W1T 3NE
Tel :                   +44 (0) 20 7636 8507      
Mobile:             +44 (0) 77 8530 3164