Imagine?

I appear to have had a party last night. Judging by the empty bottles of Malibu, Baileys, Brandy and Vodka sat in my kitchen, the rhubarb jam and dog chews in the garden it was a good one too. My neighbour's were drinking something called 'Bailey BooBoos' a sticky mixture of Bailey's and Malibu which I was far too sensible to even sniff at. It's a nice feeling to be the most well for once - even though I'm exhausted, in pain and coughing the lack of alcohol and early finish must've left me in far better condition than the drinkers.



It just sort of evolved - the best kind of party. Sitting in the sunshine for half an hour turned into more hours, more neighbours, take out food and alcohol. I fear we have now become the chav scum house of the road, sitting in the garden drinking, sometimes in our pyjamas and yesterday eating take out food outside. It's very Big Society and fortunately the neighbour's won't complain because they were there. Which amused all the drunk neighbour's as I got stressed last night on the grounds that we DO have other neighbour's who might not have appreciated our renditions of Del Amitri quite as much as we did. Mind you, the fact that we stayed outside while it was raining, determindley wrapped up in blankets as some sort of 'rain warding offer' talisman might mean they all think we're so bonkers we're not worth asking to be quiet. Or kept happy by the party finishing long before pumpkin time. Maybe.

Something was said last night which stood out from all the other somethings. We don't really talk about access or adaptations when we're all together; as we tend to socialise at home it's just naturally enabling and people offer help as and when I need it. Being in my flat during the evenings helps me as I can go straight to bed when I need, knowing that people are there to assist with anything I'm too tired to do and will turn up the next day to clean up and work off their hangovers. All just part of being friends and acknowledging other people's needs in whatever form they arise.

So when the subject of Dolores' hen night came up and ideas were discussed there was one sentence which summed up this philosophy. "Whatever we do, I want it so that Bendy can be there". Twelve words which say and mean everything. I was so touched I had tears in my eyes. The hen events will be planned not just so that I can join in with the activites, so that I can access the venues, but also so that it's at a pace I can keep up with, resting when needed. Because I'm wanted there. Wanted enough to change everything around if needed.

Just imagine what the world would be like, what the possibilities would be if disabled people were wanted by everyone, everywhere as much as that...

Time To Speak Up

 Time To Speak Up, originally posted on ABC Ramp Up and cross posted here with kind permission, thank you.
It's important to remember that as disabled people we are fighting these battles across the world, our Australian cousins need us more than ever now that James Purnell is peddling his poverty pimp plans Down Under.

When I realised that there was going to be an NDIS (National Disability Insurance Scheme) discussion at my university, Latrobe Bundoora, I was pumped-up and excited. 

The discussion was to be hosted by Professor Robert Manne as part of the Ideas and Society Program of debates and public lectures. Many big guns in the Australian disability sector were speaking. John Della Bosca (Every Australian Counts), Dr Rhonda Galbally (Chair of the National People with Disabilities and Carers Council), Jim Mansell (Emeritus Professor of Learning Disabilities) and Bruce Bonyhady (Chairman of Yooralla) were the orators at the event.

As I said, I was excited - there was a relevant discussion being held on my campus at an extremely convenient time for me! Unfortunately, I almost missed out on the event due to a surprising lack of promotion. The equality and diversity centre on campus had no flyers up, and it was only due to my procrastination leading me to find a notice on a nondescript pin board that I discovered the event. From the lack of promotion, anyone would think they didn't want anyone to attend at all.

When my class finished I leisurely drank a cafe latte in the sun until it was time for me to head over to the building where the talks were being held. When I entered I was stopped by staff and told that those in wheelchairs should wait to be seated in the designated positions. But I'm postgraduate, I do what I want - I'm cool in that way. I said thanks, but told them I would find my own seat. Making my way to the front I noticed a distinct lack of disabled people, was I early? They weren't waiting in the foyer either.

And yes I know many disabilities are not visibly obvious, but still, I was pretty surprised to be the only guy in a wheelchair. Surely my disabled compatriots wouldn't be too far off, after all, it was only a three-minute walk from the coffee shop.

In the crowd there were plenty of men and women in suits, though I wouldn't have thought they were the target market for this discussion. I waited patiently as more suits shuffled in along with a fellow wheelchair user. That's better I thought, but still, only two wheelers? The main attractions then arrived, taking their positions at the table. Rhonda luckily brought her portable ramp in order to reach the stage, saving much (deserved) embarrassment for those who organised the event. Regardless, things were about to get interesting.

A cavalcade of wheelchair users and people with Down Syndrome then entered the room all at once. Coincidentally, the cameras had begun rolling. I feared a standing ovation, but luckily that didn't come to pass. 'The disabled' went to the designated seats where I was supposed to be - near the back, like in the cinema.

I was shocked that I didn't recognise anyone at all from my university, let alone any fellow disabled students. I would have assumed at least one or two would attend, but I was wrong.

Bundoora is by far the largest campus of Latrobe University, and it would be a safe bet to say that there are at least 15,000 students. I could count maybe one or two people in attendance who I would hazard a guess as being students (no suits), in addition to me. And none of them 'looked' disabled.

Disappointing.

Still, I was there for the speeches and discussion, not to analyse the crowd as was taught in my market research subject. And the speeches were great; the audience was told that the disability support system in Australia is "underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports." I nodded my head in acquiescence.
My cynical marketing brain went to work. I couldn't help sense a degree of detachment from the issues in Bruce, John and Jim. From an anthropological perspective they were all big masculine men in suits, 'providers' if you will. They definitely were not the ones needing government support for illness or disability.

Little jokes were made with regard to whether the NDIS bill would get through the Parliament. Rhonda Galbally wasn't smiling at these jokes, and neither was I. And it wasn't because we don't have a sense of humor. There were no smiles because Rhonda understands the severity of the situation, and though she herself is now an extremely successful philanthropist, advocate and businesswoman - she would have definitely benefited from increased disability support during more uncertain times.

Now those reading this may suggest that I'm trying to create divisions, and to portray it as an 'us vs them' situation. That is sincerely not my goal. I did, however, genuinely sense a degree of detachment in some of the speakers.

During her speech, Rhonda raised the issue of disability welfare related protests, or rather a distinct lack of them. If a situation of underfunding the magnitude of that which exists in the disability sector was apparent in the arts or education sectors, there would be mass riots in the streets. And this isn't to say that the arts or education areas are funded adequately' it just goes to show how comparatively bad the disability sector is in Australia compared to everything (and everywhere) else!

My above point raised another issue in my mind; who exactly were the people in the audience if they were not students or people with a disability? Why hadn't there been any protests? It soon dawned on me that the majority of the crowd were representatives from service providers. Advocacy organisation representatives, charities, personal care providers and Victorian government delegates were there in spades. But where were the people with disabilities? At the back in their designated corner, that's where.

The concept of advocacy is based on someone representing you, and/or acting on your behalf. Similar to the functions of charity organisations, service providers and the like; limited staff act on behalf of a multitude of clients, carrying out their requests. Can you see the problem here?

Again, I may just be cynical, but if one advocate in an organisation represents 20 people with a disability, and there are 10 advocates in the organisation fighting to rectify the dire situation the strained disability sector is facing, what happens as a result? The advocacy organisation sends one letter on behalf of 200 clients, or if you are lucky, there are 10 letters mailed out, one from each advocate.
Ten letters delivered, not 200. A hundred service provider representatives in the audience at the event I attended, not 2000 people with disability. A thousand advocates in the street capital protesting, not 20,000 outraged cripples.

I understand how crude and simplistic the above examples are, but the essence remains the same. In order for real change to occur, people with disabilities can no longer palm off responsibility to our carers and advocates. We can no longer accept our shameful situation as the status quo, and if we want change we must make our collective voices heard. Be your own self-advocate, tell the general public and the government what you really want. And yes, I know this is hard, I know you're tired of fighting, fighting just to stay afloat. But if there ever was a time to struggle, it is now.

Yes, increased individualised funding may lead to many disability charities dying out. But people with disabilities don't want charity. Subpar service providers may shrivel and die, but only because of increased competition and choice. Advocacy organisations may shrink, and be required to switch their focus to solely represent those who really can't advocate for themselves. But this is a cost worth enduring for a better standard of living. A standard of living we are owed.

Don't expect your advocate or carer to attend the next NDIS meeting on your behalf, go yourself. Chain your ventilator to Parliament house in protest, park your 200 kg wheelchair on Capital Hill with your brake firmly on and don't budge. Make a stand, even if you can't stand. Make a difference. Otherwise we're all screwed and we will continue to be pitied. I don't want pity, I want respect. How about you?

Carl Thompson recently finished his Business Bachelor and now plans to relax before he joins the 9 to 5 grind. He blogs here.

Latest News From Benefits And Work

Double tribunal triumph as Atos medical report “wholly discredited”

“I came out of the Tribunal with 15 points for the ESA and an award of DLA Higher Rate Mobility and Middle Rate Care and I have to admit an immense feeling of euphoria!”
“Thanks to the information and help guides available on this fantastic site . . . the ATOS medical report was . . . wholly discredited.”
Read more.

More feedback from the forums at the end of this email

Forced labour scheme begins

Dear Kali,

Before we get to the news, we have a favour to ask.

It will take literally five  seconds of your time.

We’ve started a Benefits and Work Facebook page, partly to try to reach those people for whom Facebook, Twitter and YouTube make up most of the internet.  And partly because having a reasonable number  of people  ‘like’ you on Facebook is more evidence that you are an organisation whom people trust.

So, could you please spare just a few moments  to visit our Facebook page and click on the ‘Like’ icon near the top of the page.  You can only do this if you have a Facebook account, but if you don’t, you can just click on the Like button and sign up for a free account.

 Alternatively, you can also click on the ‘Like’ icon that appears near the bottom left of almost every page on the Benefits and Work site.

Thank you for helping spread the word!

NEWS
As what is beginning to look more and more like a war on claimants hots up, last month saw the introduction of a  ‘forced labour’ scheme.
(Members only). 

Many thousands of claimants will be obliged to work for up to 30 hours a week for a month for no wage whatsoever. There is no limit to the number of times claimants can be forced onto the scheme. Those who fail to comply will lose their benefits for 13 weeks for a first offence and 26 weeks for a second offence.

The scheme is aimed at JSA claimants, but with so many people likely to fail the new work capability assessment, that may well include thousands of  sick and disabled claimants who are deemed not to be trying hard enough to move into work.

The propaganda war is also becoming more vicious and ill-informed as the DWP feeds easy to misinterpret figures to the press and then looks the other way as hate-provoking misinformation fills the tabloids.

For the claimants on the front-line, there’s s also the shocking news of the lack of disabled access at many Atos medical centres, which most claimants are obliged to attend for their work capability assessment.   An astonishing one in five centres don’t have disabled access and Atos lists just one dedicated disabled parking space for the use of around a million claimants a year.

FIGHTING BACK
The government aren’t having it all their own way, however.  Below is a quick round-up of  anti-cuts actions over the coming month that you may want to support.

A national week of action against Atos is scheduled to begin on 9 May with a picnic and party in Triton Square*, home of their head office, at 2pm. 

On May 11 thousands of disabled people, their friends and families will be holding a march and lobbying parliament to protest at cuts to benefits and services.

The Justice for All campaign, which is fighting to save free legal advice, is holding a day of action on 3 June, which they are hoping members of the public will take part in. 

PRESS
Radio 4’s You and Yours programme is working on a report about the work capability assessment which may at least present a more honest picture of what is really happening to sick and disabled claimants.  As part of the feature they are hoping to talk an Atos health professional – anonymity assured.  If you are one of the Atos staff who read this newsletter, why not contact You and Yours in confidence?

You and Yours are also hoping to hear from people who have received a reassessment letter and are awaiting a medical or who are appealing an ESA decision.  More details here.

Elsewhere, a freelance journalist writing a piece on the forced migration from incapacity benefit to ESA for One in Four, a mental health service users magazine, is keen to hear from anyone who went through the Aberdeen or Burnley pilots or who is going through the reassessment process now.  More details.

NEW RESOURCE FOR PROFESSIONALS
Welfare rights expert Mark Perlic – who has provided free resources for this site in the past - is publishing an updated ninth edition of the invaluable DLA and AA caselaw pack in June of this year and is currently taking advance orders.  More details from this flyer.

Mark is also running DLA and AA case law training days in Birmingham and London in September and October of this year.  More details from Mark’s website.

GOOD NEWS FROM THE FORUMS
Finally, in spite of the all those bank holidays over the last  few weeks, we’ve still heard from a number of members with good news about their claims and appeals.

Atos medical report wholly discredited – both ESA and DLA tribunals won


Support group and highest care DLA on initial claim

IB and ESA appeals won

From WRAG to support group on appeal without attending hearing

Award increased to higher rate mobility and middle rate care on renewal.

From lower to higher rate care and lower rate mobility on appeal for 10 year old

Support group on initial claim

Successful DLA appeal

Successful IB appeal

WRAG on appeal

ESA from 6 to 21 points


PASS IT ON
You are welcome to reproduce this newsletter on your blog, website, forum or newsletter.

You can also read this newsletter online.

Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
Company registration No.  5962666

If you’re not already a member, find out how to subscribe to Benefits and Work and give yourself the best possible chance of getting the right decision.

Denial

Yesterday was a long and busy day. I had three hospital appointments to attend, fortunately all in the same hospital and then an interview for a documentary. Which is probably why I was grey, shaking, whining and sporting a heartrate of 120 whilst sat down by teatime. 

I saw the hand physio and specialist hand OT yesterday to get another custom made splint and decide upon the supports we need to order for my wrists. The physio and OT are concerned about 'joint preservation', in layman's terms making sure I don't destroy my joints 50 years before their 'use by date' The NHS spends a fair bit of time and money on this kind of thing, the understanding that money spent early to save more later having worked well in some services. The problem is, whilst the NHS is spending all that money ensuring my condition deteriorates at the slowest possible rate, all our hard work is undone by the lack of support in the social care sector, which means, however hard I or my NHS therapists try, there is only so much we can do to preserve my future function without practical help on a daily basis.

The main appointment was Freak Clinic. Dr FC has been my doctor since just after I was diagnosed with EDS. He's not a rheumatologist, but in the absence of continuity of care in that specialty he has overseen my care, and despite claiming he knows nothing about EDS now has a better understanding of it's impacts and how to deal with it than most rheumatologists do. But he's always had an EDS specialist he could call upon if needed, until now. Since Professor Bird retired there have been rumours of a dedicated EDS clinic in the north, but they still remain rumours. Dr FC feels, quite understandably that as a district general hospital they are out of their depth attempting to manage a patient like me, without an expert they can more readily call upon.

It was a depressing appointment. So depressing I don't want to talk about it, as that'd be acknowledging the reality of what was said. I like it better in Egypt. It's warm and they know how to throw a good revolution so I'm staying there. Writing about it to the entire interwebs however weirdly remains in the Nile territory and so is acceptable.

The words 'there is only one way this can go' were uttered. The look on my face must have prompted the clarification that actually there could be a second way, one where we keep things stable. I like that one better so we're all sticking with that and no comments to the contrary please. I explained that I'm having choking episodes more frequently and that I point blank refused hospital last time because I was scared A&E won't know what to do. An opinion that unfortunately my consultant agreed with, they won't have a clue. I could see how nervous that was making Dr FC and so that made me nervous. My reassurances that if worst came to worst I can hook out my larynx and put it back myself didn't seem to improve the mood much.

So we agreed upon a plan. The reason I haven't been seen on the three monthly review basis my new rheumatologist wanted is because the PCT (Primary Care Trust) have been refusing to fund three monthly reviews, since long before the election. The drive is to push care back on the GP's, regardless of whether the GP's have the expertise to cope, and the logical conclusion of that policy may explain the lack of funding. Maybe. My GP cannot cope with this, nor should he have to. He does a great job of being my GP, keeping track of my general health, prescribing and referring as needed while he oversees the situation. My consultant doesn't feel he or the hospital can or should have to cope alone without specialist input, he is not trying to push me off to be someone else's responsibility, the local hospital will always care for me, but they need back up to do so, even if that backup is only advice at the end of the phone. The plan is that Dr FC will talk to my rheumatologist and they will see if they can find anyone else to advise and work out some sort of plan for A&E to follow should I have to be admitted. They will also investigate whether anything is available for me to use at home, the neighbours most likely to be called upon in a breathing emergency are medical professionals and had enquired about the possibility of using something like IM diazepam to reduce the spasms. The potential problem with that is that it relaxes me so much none of my muscles work and so I stop breathing that way so specialist advice is desperately required.

And now you see why I'm planning on staying in Egypt. It really does look nicer there.

"The Ministry of Magic has fallen. He is coming. HE is coming"

 As England celebrated the fairytale wedding of a beautiful princess and a handsome prince watched by a willing world bouyed up on good humour, pageantry, pomp and circumstance another, less visible England continued as normal. Parent's awoke filled with pride for children the world will never see as they do, princes and princesses of courage, determination and innovation achieving day to day miraculous successes not marked by champagne or celebration, but by preparation for the next battle to be fought, the next prize to be won on the long and winding road that is disability.

Today is the 5th annual Blogging Against Disablism Day and in the last year many things have changed. The Dark Lord has taken over the Ministry for Magic, installed his own Minister and embarked on an ideological war. Daily propaganda is printed and fed to a willing media about the scandal of Mudbloods; a population fearful for the futures of their own children buy into scaremongering stories about the cost to the public of supporting Mudbloods and bury their heads in the sand, denying the prospect that one day, as we all do, they too will become Mudbloods and fear the brown envelope delivered by postman not owl to inform them they are no longer considered financially sustainable.

When that day comes, despite all the warnings, all the challenges raised by those already labelled Mudbloods, it always comes as a surprise. As if being a magical person somehow protects from the dark forces of life, accident, illness, injury, despair. By the time that lesson is learnt the Mudblood file is already filled out at the Ministry, a 'useless eater' label applied and families make ever desperate attempts to protect their much loved Mudbloods from a pre-destined fate they believed themselves magical enough to escape. 

There is no escape.

"The Ministry of Magic has fallen. He is coming. HE is coming"

And unlike Hermoine, the Mudbloods of today's England have no Harry and Ron equipped with courage, compassion, loyalty and sense of innate justice to wave their wands and wage war as we are held down and labelled with Mudblood tattoos on our inner arms.  We have no Dumbledore to advise us, to leave us clues of how to challenge such dark forces and win. We don't even have a Dobby, fiercely protective to the very end, willing to sacrifice everything in the battle for right and wrong.

Instead we take up our wands, in the form of computers and keyboards to weave our wondrous words and hope that you, the as yet still magical people heed our warnings, our understanding that once just one person is labelled a Mudblood there is no end point but the destruction of all Mudbloods, labelled Mudbloods for reasons entirely beyond their control by a small group of wealthy, powerful dark witches and wizards bent on shaping the country in their image, seemingly ignorant of the fact that one day, someone they love will receive the letter informing them they are now a Mudblood too and no longer financially sustainable.