Fit For Conference - Spoonie Style

9/30/2011 12:12:00 pm BenefitScroungingScum 10 Comments

We're two thirds of the way through conference season and it's fair to say the spoonie warriors are suffering badly from exhaustion. It all started with the Liberal Democrats in Birmingham, with stunning performances from speakers like Shana Pezaro, culminating in the Liberal Democrats passing a motion to challenge some of the most destructive parts of the Welfare Reform Bill, meaning that it is now official Liberal Democrat policy to oppose some of the government's plans. 

 I managed to attend the Disability Benefits Consortium event at the Liveral Democrat conference even though The Broken of Britain can't even afford stamps or cards because I happened to have a place to stay in Birmingham and a boyfriend good enough to push me to and from the event despite his personal discomfort at being so close to politicians. The Lib Dem DBC event was outside the secure zone so I could attend without a pass, but although the actual venue was very accessible, getting there was a problem. The hotel had been advised to expect disabled people, and parking in their car park made available to us...but it was impossible to drive to the hotel car park because the roads surrounding it were within the secure zone. If my boyfriend hadn't been prepared to give up his time to push me half a mile to and from the event it would not have been possible to get me there. Fortunately he stepped up and the event was well worth attending. 


Big credit to Steve Winyard from the RNIB who stood up at the end of the DBC event and called upon all the charities to focus on aggressive campaigning against the damaging parts of the Welfare Reform Bill as an immediate priority. Grassroots campaigners are now eagerly awaiting the rest of the big charities to follow RNIB's stance and remember their most important duty is to support those of us they purport to represent. 


Labour's conference was held in Liverpool which made it easier for our penniless campaigners to attend as I live close enough to drive to Liverpool and to provide the fabulous Sue Marsh with accomodation as she was there in her dual roles as campaigner for The Broken of Britain and as delegate for her local Labour party. 


Liverpool's a great city and Scousers are warm, welcoming people so we all owe our thanks to the nice car park man who I blagged free, all day parking from by explaining we were disability rights campaigners- it was supposed to be £12 a day which is far too expensive for us!

Sue had a conference pass in her Labour role, but as I am not a member of any political party it proved impossible for us to find, or afford a conference pass for me, even though Lord Prescott helpfully tweeted asking Labour to provide me with a pass. That meant I had to stay outside the secure zone until Wednesday's open day for non Labour members for which I had a pass. 


Still, we networked and campaigned as best we could. Short of both spoons and equipment Sue and I spent our time at conference sharing a mobility scooter - which unsurprisingly attracted an awful lot of attention. Thanks to Merseyside Police for smiling and waving at us rather than arresting us for inappropriate mobility scooting behaviour! 


Unfortunately, the event organised by Disability Benefits Consortium on the welfare reform bill had to be moved at the last minute inside the secure zone, meaning I couldn't attend and no-one from The Broken of Britain was able to be there to put your concerns across. It had been booked in the Albert Dock's Premier Inn - who insist they told conference organisers it wasn't fully accessible, but conference claimed of course that Premier Inn had told them it was fully accessible. None of this will surprise sick or disabled people but it did seem to come as a surprise to others. Having made up a bed to sleep in the back of my car so that I could manage to be at the event after a morning networking this was very frustrating news. 






Despite the lack of access and disappointments about welfare being whitewashed from the Conference we picked ourselves up and carried on. Monday finished me off completely and I spent Tuesday at home in a haze of pain, exhaustion and heavy medication while Sue bravely went back into battle on all our behalfs. In public Sue and I manage to hold it together and appear eloquent and in control, but my boyfriend and her husband get the uncensored version where we can't even string two words together because we're so exhausted. 


Wednesday morning in my flat was a scene to behold as Sue and I attempted to transform ourselves from pale, dark eyed, exhausted women into some sort of glamourous, publicly presentable version. Somehow we pulled it off and made it into the secure zone once again sharing the BendyBus. Fortunately there don't appear to be any photos either of Sue and I on the scooter together, or of Giles from the Daily Politics show scooting through conference with me sat on his knee! 


We met up with Dame Anne Begg for a drink to discuss welfare issues, hung out with bloggers and then went off for the main attraction of the day, the Labour open day question and answer session with Ed Miliband. 


Poor Ed. As my parent's commented, he just didn't know what he was taking on and the question Sue and I had so carefully crafted handbagged him good and proper. Being a spoonie I had to leave the Q&A session to go for a wee immediately after Ed Miliband responded to our question and poor Sue was left in the hall not knowing what had happened to me! I was followed to the toilet by camera crews from the BBC and ITN so it was a while before Sue found me and she was so worried I'd been kidnapped by the Labour party ;) 


Although Sue and I were both shaking with exhaustion at this point we couldn't hang around because I was booked to speak at Left Foot Forward's fringe event held in Baby Blue Bar....which turned out to be accessible only by a flight of concrete steps. Huge thanks go to Will Straw for his knight in shining armour role who carried me into the venue and the twitter follower who introduced himself to me and carried me back out of the venue** Sue and I both got back on to the BendyBus and arrived in style at the Labour tweet up...we were so exhausted we couldn't stay long but it was great to meet everyone and be written on by The Farm even if two days later I've still got black pen on my arm! 


So...that's two conferences attended, blagged, networked by The Broken of Britain and all without a penny of funding. Ed Miliband has been in touch to say he intends to honour his promise to meet with us and discuss sickness and/or disability issues in relation to welfare which we are all very much looking forward to. 


Next week conference season finishes with the Conservative conference in Manchester. We don't have a conference pass, and don't anticipate being able to find one at such short notice, but we'd love to meet Iain Duncan Smith, Maria Miller or David Cameron there if they are willing to match Ed Miliband's promise to meet with sick/disabled people actually affected by their 'reforms'! Assuming the Disability Benefits Consortium welfare event remains outside the secure zone I'll be attending that at Conservative Party Conference and we'll keep you updated as to any developments. 


But for now, your two exhausted spoonie warriors just want to get through the rest of today and spend a wekend resting up, enjoying the weather and a complete holiday from welfare. 






*we're working on transcripts for people with hearing impairments and United Response are trying to put together an easy read version so please give us some time to get those out

**His name's too far back in my timeline to find and thank him by name. Updated, thanks to @zephleppard

Why I'm No Longer A Labour Voter...

9/22/2011 08:57:00 am BenefitScroungingScum 5 Comments

"the principle underlying welfare reform is the principle of the workhouse... you make claiming benefit so degrading and so difficult that people don't want to do it.... that was the principle of the workhouse and that is the principle that the very lovely James Purnell is introducing into welfare"Diane Abbott 'This Week' 4/12/08

As, the 'very unlovely' James Purnell is too busy claiming for his weekly grocery bill , rent and cleaners to deal with the state he left his flat in, let alone comment about his hypocrisy, I'm directing you to this post by Brainblogger which is a poignant insight into the impact of such reforms upon the lives of disabled claimants.

Income Support rate for single adult over 25: £64.30 per week.
Carer's Allowance : £53.10 per week 

Please take time today to email Labour and remind them of their role in introducing Employment Support Allowance and the politics of the workhouse. 

'never fall ill, never grow old, never become disabled', for if you do, not even Labour will speak up for you.'

9/21/2011 11:53:00 am BenefitScroungingScum 7 Comments

Government's welfare reform bill trick stinks of injustice

9/16/2011 08:30:00 am BenefitScroungingScum 5 Comments

"The welfare reform bill will affect millions of lives at their most vulnerable point – isn't that worth proper scrutiny?"  politics.co.uk 

Owls And Oramorph

9/15/2011 11:00:00 am BenefitScroungingScum 9 Comments

It's been a busy old month, especially for a month that's not yet halfway through. So much has happened politics wise that the point of this blog - a diary of the life of someone with severe disabilities reliant on welfare benefits - has got a bit lost. Rumours that it could be found in the middle of a morphine haze are worryingly accurate as anyone who follows me on twitter already knows.

I finally got to see my rheumatologist, who'd requested to see me three months after my last appointment in December 2010, six months late is not that long a delay for rheumatology which did not benefit from the additional funding New Labour threw into the NHS by having the misfortune to be for patients who annoyingly don't tend to get better and fit into nice, target driven tick boxes. That rheumatology is the speciality covering musculo skeletal problems which keep large numbers of people out of work seems to have been thrown onto the 'who needs logic or sense' pile by both the previous and current governments.

So, back to my rheumatologist. He's ever so nice and has enough of a sense of humour to have explained that had I not thrust my my chest out to relocate both of my shoulders so loudly during the appointment that he would have been very disappointed. I'm not sure if his disappointment would have been related to the dislocating parts or the chest thrusting parts but he's lovely so can get away with either. Plus he managed to keep a straight face when I staggered sideways into the consulting room bin so he gets points for that too. We discussed the breathing problems I've been having and I've been referred for some specialist lung function tests, with emphasis on looking at the structure of the tissue around my neck and throat to ensure it works. Quite what anyone plans to do if it appears not to work brilliantly I'm not sure at this point, but as the appointment has come through for Tuesday next week either it's been sold to a fellow consultant as being someone who's 'interesting' or they are actually a teensy bit worried I might stop breathing and not be able to start again.

Nice isn't going to get me fit for work though, not that getting fit for work is really within his capabilities as to my knowledge the man doesn't have a DNA altering machine tucked away somewhere. It's completely forgiveable that some people look at those of us campaigning so much and wonder why if we can do that we're not fit for work. I often wonder that too, especially on my rare good days, then life pulls it's usual bendy trick and manages to make the point for me.

About 10 days ago, oramorph not being conducive to accuracy, I moved my head to one side. Somehow, in that "I don't know how it happened" bendy way there was a sliding sensation in my vertebrae and a snapping noise hideous enough to disturb me as it was distinctly different from the clunking noise most joints make when they dislocate or relocate. So much so that at the time I genuinely feared I had broken my neck and went to bed that night not knowing if I'd wake up a quadriplegic. No offence is intended towards those with quadriplegia, but it's not top of my current life wish list. I consoled myself with the fact that quadriplegia might be spectacularly shit to get used to but it would at least bring the benefit of a full care package...for now.

One of the big problems for those of us with rare conditions is what we're supposed to do when such acute problems arise. Friends and boyfriend all were extremely concerned, I was in agony, not making a huge amount of sense and unable to turn my head even 45 degrees each way - a huge restriction for someone with the neck movement more typically seen in an owl. Lots of suggestions were made, that I should go to my GP, that I should go to A&E but everyone understood that there wasn't actually anything my GP or A&E could do. If I went to see my GP, great though he is, he would have looked at my blankly, asked what I thought had happened and mumbled about x-rays and A&E before making sure I had enough pain relief. If I'd gone to A&E a junior doctor with no previous knowledge or experience of Ehlers Danlos Syndrome would have seen me, quite possibly thought there was nothing wrong as I had the range of motion of a 'normal' person and dismissed me. Alternatively they'd have x-rayed me, scanned me and then started making noises about manipulating my neck, which to me is an accelerated route to quadriplegia. So, I dosed up on oramporph, tweeted utter nonsense to the internet and sat it out until my physiotherapist could see me.

It's safe to say my physio was somewhat peturbed by the state of my spine. Somehow I'd managed to rotate two vertebrae (C6 and C7) around to the left where they had got 'stuck' due to poor muscle recruitment and associated spasming. So a twisted rather than broken neck. Thirty minutes later my vertebrae were back in the position they should be and my physio had got over her panic that she might wreck her day by murdering one of her favourite patients.

I'm supposed to be in Birmingham this weekend, partly to visit my boyfriend and partly to take part in a fringe event about welfare reform at the Liberal Democrat conference. No-one's especially thrilled at my driving in this state, so I agreed that if my physio absolutely forbade it that I wouldn't go...but made it clear how important it is to me. My physio's the sensible sort so she expressed her concern and we came to a compromise. If I want to go to Birmingham I have to stop twice on the way, during what is usually a 1 hour 40 minute drive if the traffic's ok. At each stop I have to stay there for 20 minutes move around, do physio and rest. Once I get to Birmingham I have to go straight to bed and stay there until someone other than myself deems me fit enough to get out. Considering my boyfriend's unreasonable standards of wellness that probably won't be til Saturday morning!

So that's my version of 'fit for work'. You can actually acheive an awful lot smashed out of your mind on morphine if so inclined, but the accuracy of those acheivements can be a bit dubious if amusing for everyone else. That's fine when you've got no-one to answer to but yourself...but something that actual employers are much less keen on.

So yeay me. Totally fit for work, with enough drugs on board to knock out an elephant. And definitely not as much sense as an elephant while so knocked out.

Where Next For New Media & Politics?

9/15/2011 09:05:00 am BenefitScroungingScum 0 Comments

If anyone would like to come along to this fringe event during Labour Party Conference hosted by Left Foot Forward I hope to see you there on Weds 28th September at 7pm in Baby Blue Bar, Albert Dock. I'm the only girl on a panel full of political big boys ;) You don't have to be a Labour party member or supporter - I'm not!

URGENT APPEAL FOR ACTION NOW!

9/14/2011 11:58:00 am BenefitScroungingScum 0 Comments

After an incredibly constructive debate yesterday in the House Of Lords the government appear to be concerned about how many Lords had significant concerns about the Welfare Reform Bill, even those Lords who in principle supported the bill had major questions they wanted answers to.

For a bill of this size and importance, convention dictates that the next stage of the bill should be kept in the main chamber of the House of Lords for debate. It's particularly important the bill be continued to be debated in the main chamber as disability access to the smaller committee rooms is very limited and people will not be able to access the committee rooms to exercise their democratic right to observe the passge of the bill from the public chamber.

At 3.30pm today the govermnent are tabling a motion to move the grand committee stage of the bill into one of the smaller committee rooms. Presumably the government are hoping that by moving a bill into the committee rooms it will be harder to scrutinise - there won't be enough space in any of the committee rooms to allow for all the Lords to participate, let alone for us to scrutinise online or attend in person.

This is an outrage - the government are clearly concerned by the level of queries and opposition to the Welfare Reform Bill highlighted by yesterday's debate and wish to quietly sideline it to a committee room where they hope it will pass with less opposition. Tabling the motion for the afternoon following PMQ's is also an underhand trick as it means it will be harder for us to object through the main stream media.

This is our call to arms. This bill affects us, our families and every aspect of our lives, as well as the lives of those currently paying into the system in anticipation of protection should they require it. If we can make enough noise in the next few hours the government will be forced to keep the passage of the bill in the main chamber of the house of lords where it can be effectively and appropriately scrutinised by all.

What you can do to help is this;

Please post copies of this blog onto your facebook, your twitter, stumbleupon, wikio etc. Please email it to everyone you know, please talk about this on your own blogs. Email or phone your MP to register your objections, email or phone the house of lords to explain your concerns, email or phone the media, local or national and explain that whether or not people are in favour of this bill, that it is a fundamental democratic right to have it debated in the main chamber of the house of lords where there is space for all who wish to attend and observe. Highlight the injustice and hypocrisy of the governments behaviour in trying to sideline this important bill into a room too small for all the Lords to attend and certainly too small to allow those in wheelchairs, or with guide dogs, the very people most affected by this bill to be able to observe from the public gallery.

If we make enough noise before 3.30pm today the government will have to drop this underhand tactic and the Bill will continue to be debated in the main chamber of the House of Lords where everyone who wishes to can attend and observe.

UPDATE 13.30
The email addresses to contact are;

anelayj@parliament.uk – this is the chief whip to whom you should send the email and cc it to the others .

bassams@parliament.uk – opposition chief whip

freudd@parliament.uk –

Total Politics Blog Awards - Shameless Self Promotion

9/11/2011 04:30:00 pm BenefitScroungingScum 4 Comments

Thank you SO much to everyone who voted for me in the Total Politics Blog Awards - I've made it into the top 50 non aligned bloggers at number 22, and I'm the second top woman on the list. I've come in ahead of Jon Snow of Channel4 and Adam Boulton from Sky to whom I feel I should be offering lessons in 'how to throw a tantrum' to after witnessing his attempts. 

It's also fantastic to see Underdogsbiteupwards at number 3 as that's two disabled people with very different perspectives on politics and disability in the top 50! 

Thanks again everyone - these awards usually only have one name on them but they are really for all of us campaigning and trying to make a difference to politics, so congratulations to you all. 

Remembering Our Childhood Questions...

9/08/2011 12:41:00 pm BenefitScroungingScum 2 Comments

 'But How Did This Happen? Why Did No-one Stop Them?'