Laptop Heaven

Thanks to the quite extraordinary response to my "Cry For Help" post, I'm typing this from a beautiful, robust new MacBook.

Of course, there's no doubt at all that I chose something very nice indeed to own. It's hard not to be a bit excited, though guilt quickly drowns that out. I researched and read reviews and generally annoyed Steve Sumpter (@latentexistence) all through his trip to the barbers.

But as I'd eaten through two cheap laptops already in the Spartacus cause, I desperately didn't want to be back in this situation, in debt and unable to do what I have to do just a year or two on and wanted to make sure that whatever I got worked for me - but mostly for all of you. I needed something light - as light as it could possibly be so that I could take it to meetings with me. I'm very weak. I needed something with very long battery life so that it would last all day in London without me having to carry a heavy charging cable around. I needed something very simple to use that was as impervious to viruses and malware as possible. I'm not very techy and can't fix things when they do go wrong. Finally, I usually have my laptop on 16 hours a day with up to 30 documents open at once. I often multitask, doing 3 or four articles or pieces of work at once, so the machine I chose had to have excellent capacity.

The response to the fund was overwhelming. Within just a few hours, hundreds of you had given what you could and the target was met and surpassed. I'm honoured that that would never have happened if people didn't believe in me and what I try to do. Of course, there will always be a few dissenting voices. And I know how that feels. I've put everything into campaigning these last few years - my energy, my money, my family time and my health. For four years now, I've done it unfunded and without asking anyone for anything.

Sometimes I've seen others fundraise and it's hard not to feel a pang of resentment.  Most other bloggers have a donation button on their blog or advertising, but I resisted those options. I felt that a donation button would mean that any donations were not public. No-one would know what I get or when or from who. As for advertising, I looked into it extensively, but the good old benefit trap caught me, as it tends to do.

If I have advertising on my site I have to make at least as much as I currently get in ESA and that amount must be reliable. What happens the next time I spend months in hospital with no ESA? What happens if the revenue falls some months because I'm too ill to blog?

I would hate people to think that I haven't looked into absolutely every avenue I could think of and more before I would dream of asking for other people's money.

But when those trolls who know nothing about me say "If you can go to all those meetings, you can work" it is worth reminding people who haven't been reading my blog from the start, just how ill I am. My crohn's disease is very severe and I get no remissions. I've had 9 major operations to remove 36 tumor like blockages. You all have 4 metres of bowel, I have 1.5 left. Below a metre becomes "unviable". I've resisted asking what that means. I weigh 6 and a half stone and am constantly malnourished. I have to take most of my meds by injection (which I give myself) as I can't absorb them properly and I average about 5 weeks per year in hospital.

My doctors would like me to give up and be fed through a tube into my central vein while I wait for a bowel transplant. I vomit regularly - sometimes 10 or 20 times a day.

So how CAN I campaign as I do? Sheer bloody mindedness. Yes, I'm often in pain beyond most people's imagining. Sometimes I give speeches bombed out of my head on opiates, hoping no-one will notice. I've run campaigns, written for national newspapers and given radio interviews from a hospital bed. If I'm too ill to travel, Dave makes me a bed in the back of the car and I sleep my way around the country. It's incredibly tough - in fact I can't think of a word to describe what it is.

But it's my choice. I don't ask for anyone to pity me, in fact those that attempted it would get incredibly short shrift. When my kids moan "It's not faaaaaaair" about something (as kids will do) I say to them all the time "Life's not fair, don't expect it to be."

I can sit home fighting to stay alive or I can push my self now and then to do something valuable at the same time. I'll feel just as ill whether I'm sitting through a meeting in Parliament or watching The Waltons from my beanbag. After 30 years of a serious chronic illness, I really did decide that "you can get busy living or you can get busy dying." I choose to spend the limited resources I do have trying to change what I see as a desperate wrong. However ill I am, there are so many so much worse off than me. People who can't communicate at all, who have no idea what is being done in their name. People who can never leave their homes, people who have nothing at all to buy food with from week to week.

When we first produced the Spartacus Report, you all came together in a quite remarkable way. We decided, back then, together, thousands of us, that we needed to be heard. We dared to hope, we put our money into producing something that might just win us a place at the table. It wasn't for fun. It wasn't to show how clever we were, it was to say "We're here and we desperately need you to listen to us.  We won't be spoken FOR any more, we want to speak for ourselves. We want a say in this discussion that is deciding our futures"

You trusted me to use those funds wisely and produce something powerful, and we did.

But we were victims of our own success. Perhaps most days it doesn't feel that way as the steady stream of dreadful news and horrific stories overwhelm us. But we were. Politicians listened and they respect us. They invite us to their round-tables and conferences. The media respect us and ask us to speak on issues relevant to disability and social security. Other groups and charities respect us and ask us to advise them or speak at their events.

And from that original frenzy, it never really slowed down. In fact it built and built. More reports were produced by other Spartacii. More subjects covered. More exposure for our issues. The media started to write about our fears more and more. Politicians started to blink into the light and ask for more information.

At first it was a meeting now and then or a speech to a conference every few months. But as the momentum has built - and momentum is the single most important thing in any campaign - so the demands have grown. Of course I'm not the only one to go to these events, but overwhelmingly, people want "Sue Marsh" because that's just the way things go. And "Sue Marsh" finds she just can't turn down things that are hugely important. How can I say no to meetings at parliament or the Lords which just might make a big difference? How can I turn down the chance to let thousands more people know at a rally or demo? How can I refuse to write articles or give interviews? When a chance to be heard was what we fought so passionately for? 

So for fours years, I've just said yes. However ill, however exhausted, however poor, somehow, I've got there, usually with the unflinching support of Dave and my boys who have never once in the whole time said "we can't afford it" or "don't do it you're just too sick". They know me better than that.

I remember a few months ago, my Mum asked, as most ask repeatedly "When are they going to start paying you for all this" Without breaking his stride on Minecraft, my 5 year old just said "Naaaaaan, she just has to do it, it's not about the money".

And so despite sorting out my own benefit trials, we stayed poor but fairly happy. But now, after all this time, people ask me to do more and more. I need more and more physical support to get anywhere at all. I can't manage public transport on my own any more, doubling train fares, I use a wheelchair and need someone to push me where I didn't before. That means someone ELSE giving their time and their energy unpaid.

And expenses are not paid when they should be. Not only do people expect you to do almost everything for free, they then take months and months to reimburse you for the cost of it. So out of a relatively tight benefit income (though I never forget I'm much luckier than most as I get adequate support and Dave works) we were constantly "subbing" huge corporations, leaving us hundreds of pounds out of pocket every month. Not now and then, every month. I felt it was my contribution all the time I could do it.

But since last year, I'd had to borrow money from my Mum and the amount kept creeping up. I couldn't pay the rent one month and had to put it off, leaving us playing catch up constantly. We were living day to day and often there was no money for the kids to go to their clubs or get new shoes. I was robbing Peter to pay Paul all the time.

Still I didn't ask for anything from anyone. I became the queen of blagging, usually finding a way to get my trips funded by making other appointments for the same day if I could. But however resourceful I was, I just couldn't get it all paid for.

Regular readers will know I tried to step away. I was so exhausted, so drained and increasingly poor, I thought it might be the best way. But the invites kept coming and the attacks were undiminished. I found I couldn't stop even if I wanted to.

Around Xmas, the fan packed up on my laptop and after about 30 minutes it would shut itself down mid blog or comment. I tried my best to ignore it and carry on. I certainly had no money to get it fixed. I'd already had it fixed twice at a cost of £120 and I just didn't have it. The hard drive had been on it's last legs for some time. It kept doing all sorts of odd and infuriating things. Then, I got malware and despite using Malware Bytes and numerous other attempts to sort it out, it was a bad one and just kept writing to my hard drive increasing the ads and slowing down the system to a standstill.

For a month, I'd been trying to blog and write articles from my iPhone, but the typos were ridiculous and it took forever. But I was in a catch 22. By the time I gave up and asked you all for help, I was owed £360 in expenses and owed hundreds to my Mum. I couldn't afford a new laptop or even to get the old one fixed. If it was just the expenses, I might have struggled on, if it was just the laptop I could have saved for a new one. But both seemed to leave me no way out.

Someone said to me on Twitter "You don't have to explain Sue" But I do. I absolutely do because this is your money and your cause and time and again you trust me to keep fighting in your name. Of course not every disabled person sees things as I do, as we do. I wouldn't dream of thinking for a moment that I speak for all sick and disabled people. But the thousands who read this blog every day seem to support what I say and try to do. If they didn't they wouldn't want to help me at all, certainly not with their own precious funds.

All the while people want me to carry on doing this, I'll try to continue. All the while politicians ask us what's wrong and how they could help, I'll carry on trying to explain to them. All the time people ask me to speak at their conference or festival or event, I'll do everything I can to get there.

I put £120 I had saved towards the MacBook (not much I know but the best I could do) and once I've paid the debts expenses got me into in the first place, there should be £500 left for future trips. I have an appointment to set up a whole new bank account on Monday, just to keep the funds separate so that they can be used as a "kitty" taking the pressure off my boys. Where people pay me a little extra, it can go into the account, where I have to fund my own trip to London it can come from that. It won't last forever, but it will help more than you could all ever know. A bit of breathing space to carry on.

So "Thank you" all. No-one asks me to do this, but they support me nonetheless. I will always, always use your money and trust with care, I will stretch it as far as I possibly can and I will always try to act as an advocate you can be proud of.

Last chance for ESA Evidence

A while ago I posted a survey for you to fill out. http://diaryofabenefitscrounger.blogspot.co.uk/2014/02/please-complete-our-esa-survey.html It was so that Spartacus can put together a response to the Work and Pension Committee request for evidence on  ESA and Work Capability Assessments.

Although it asks for an email address, this will be strictly confidential, only our researchers will see it.

It takes just 5-10 minutes and with your informatiln, we will be able to put together a response from Spartacus so that individually, you don't have to.

It really is vitally important that we give this evidence as we are the people actually suffering through the system, not a faceless charity or think tank reporting on it. Only we can tell them how it really feels, how it really affects us.

Time is running out! We only have this weekend to submit our answers as our researchers MUST start collating your answers. Please. Take a few minutes to be heard. I know it seems like an endless round of being ignored but we ARE making a difference. 

You can fill in the survey here : http://www.stefbenstead.co.uk/index.php/esa-survey

A Cry for Help

As regular readers will know, I've always been adamant that I can't take money for campaigning. I don't even have advertising on my blog.

The moment I accept the offer of some well-meaning charity, union, politician or corporation, I would become fettered by them, compromised. They would have control over what I can say or do

You might remember that I wrote a blog post early in the new year announcing that I just couldn't continue to campaign for free.

As a result,  I planned that if I only did the really important stuff it might just mean a droplet of respite for my poor long suffering boys.

You must also be wondering why so many typos at the moment?

Basically, my laptop is so riddled with viruses, it's impossible to do anything at all, so I've been trying to blog, email and tweet using my phone. I checked in the Oxford English dictionary and as I thought, this is the very actual definition of frustration. It's already been fixed twice, costing £120, but I think it's just past it now.

However, in the last month alone, I've :

• Been to London for channel 5's Big Benefit Row
• A meeting with Bns Tanni Grey-Thompson at the Lords, 
• A meeting with the Fabian Women,
• A meeting with Kate Green
• A trip to the Royal Hospital for Neuro-disability to experience eye gaze software. 
• I've been to York to lead the Better Way demo. 
• Finally, I've had to get to 2 hospital appointments, also in London. 

Obviously in most cases, I can get my expenses paid by whichever organisation invited me but it can often take weeks or even months to refund. When I have to meet MPs or peers, it has to come from my own pocket. If I have to drive long distances, we have to stop every hour or so to top me up with tea and loo breaks.** 

At the moment, I'm owed nearly £350 in expenses and this has been the case, give or take, since the start of this year. Taken from a family budget already stretched by supporting a disabled adult who can't work, every day that goes by drags me deeper into panic. 

So with a heavy heart, I have to ask you to support me in a rather more obvious way. I've set up this fund : 

CLICK HERE 

To :

A) Replace my poor laptop with a better quality one that doesn't crumble in the first year

B) Set up a "pool" of funds to act as a kind of kitty that I can dip into and pay back, buffering me against the constant uncertainly of how much campaigning trips cost and how long refunds take to come through.

I absolutely HATE doing this. I've only ever asked for support for myself once, during the frenzy of Spartacus Report and I detest the fact I'm having to ask you again. 

Whatever happens, please DON'T donate if you can't afford to, out of some kind of loyalty or guilt. Also, please DON'T donate huge sums. If we all just give a few pounds, we'll reach the target in no time. In this case, the quantity of donations really is better than the quality. 

**Clearly they can only get hold of the gold plated teabags at the moment if tea costs £3 a go!

Suggestions of Awesomeness

Hello all.

I've been asked to put together a list of leading social security experts and campaigners. I'm very very bad at this. This is one of the reasons I never do #ff ("Follow Friday's" on twitter) I just know I'll leave out somene vital, and they'll think it was intentional and that I think less of them than the people I do remember, and...and... See? I'm hyperventilating just thinking about it!!!

Here's my very first, top-of-the-head attempt and I'd be so grateful if you could leave any other suggestions in the comment thread.

Again though, please remember that if you're not on the list, I am a foggy, broken spoonie who often forgets her own phone number, never mind a list of welfare-warriors.

1. Jane Young
2. Caroline Richardson (aka "@hossylass on twitter)
3. John McCardle, Black Triangle
4. Andy, DPAC
5. Paula Peters, DPAC
6. Nick, mylegalforum
7. Michelle Mahler, WOW Petition
8. Ian Jones, WOW Petition
9. Pat Onions, Pat's petition
10. Kaliya Franklin
11. Joe Halewood, Tax and Benefit Justie Campaign
12. Mo Stewart, Independent corporate welfare investigator
13. Susan Archibald, Independent campaigner
14. Simon Duffy, Centre for welfare reform
15. Simon Barrow, Ekklesia
16. Sue McCafferty, Bedroom Tax
17. Tom Pollard, Mind
18. Frances and Rosemary from Carer Watch
19. Johnny Void, The Void
20. Clare Glasman, Winvisible
21. Steve Sumpter, LatentExistence
22. Jayne Linney
23. Mike Sivier, @midwalesmike, led on campaign to uncover how many pple died within 3 months of "Fit for Work" decision
24. Sarah Ismail, Same Difference blog
25. Sam Barnett-Cormack, ESA researcher and commentator
26. @Goldfish - Blogging against disablism
27. "Mason Dixon" Autistic
28. Dawn Willis - Great mental health advocate/blogger
29. Mark, @markoneinfour MH campaigner
30. Inclusion London
31. Jules Clarke, ESA advocate and campaigner
32. Tracey Lazard, Inclusion 
33. Anonymous author of the 2 PEople's Reviews of the WCA
34. Greg Wood, ex Atos-doctor turned whistle-blower
35. Richard Excell, TUC
36. Kate Belgrave
37. Neil Crowther, independent and member of taskforce
38. Amy Jones, @thisisamy Cerebral palsy, told her condition wld improve within 6 months to the point she wld be fit for work!
39. Charlotte Walker, @bipolarblogger 
40. @halfabear 
41. Gordon McFadden of United Amputees
42. @kabieuk Autism campaigner
43. Jos Bell, Save Lewisham Hospital campaign and fierce ESA expert/campaigner
44. Steve Winyard, RNIB
45. Neil Coyle, RNIB and ex DRUK
46. Catherine Hale, Work Programme expert 
47. Lisa Egan - @lisybabe
48. Dave Gillon @WTBDavidG

**Just to be clear, this list is for an event, so for groups (ie DPAC, Inclusion, WTB etc) only one or two names from that group are listed. It definitely doesn't mean others in those groups aren't fantastic campaigners. 
*** Also, it's in no particular order. Numbers do not denote level of awesomeness 

Musings on a Rally & a Speech

As most of you will already know, I shlepped up to York at the weekend for the TUC "Better Way" demo.

A course of anti-biotics had been trying to kill me all week, whilst failing spectacularly to munch up the non-specific fluey fevers they were directed at. By Thursday, I was phoning my GP in tears and by Friday morning, it took indusrial strength tea and elephant tranquillisers to get me in the car at all. Dave made me a duvet bed on the back seat, and I moaned and grumbled my way up t'North.

I've learnt that Premier Inns are the way to go for disabled travellers. I've always been allocated a proper disabled rook near the lifts, the staff are friendly and helpful and the rooms are comfy. This one was linked to a TGI Fridays and arriving at 9pm, we had no choice but to venture into it's deafening, fake-American-cheerleader hospitality. Should you ever consider eating microwaved steak in a cocktail bar playing AC/DC at 130 decibels with a splitting headache and a fever, I'd give it a miss. When the miserably-cheerful staff arrived at the next table to sing happy birthday, massacre almost ensued.

It was International Women's Day and all the speakers were women. York TUC wanted to take pictures of us all before the march and somehow, I found myself at the front of the demo, bearing a banner and set to lead the way! Usually, I avoid such exertion at all costs, but with Dave pushing my wheelchair and those whotsit-zulas blaring along with the reggae band, I felt a wave of irresistible activism surge in past the infinite collection of symptoms and before I knew it, I was leading a crowd of hundreds through the streets of York.

I am as Southern as fried chicken, living as far South as it's possible to get without actually paddling. When I do venture beyond Watford Gap, I'm always taken by the difference. The UK feels more united up North. Friendlier. Braver.
But as the band of cheerfully fluttering union banners and patuli oil bobbed forward, it struck me that activism really is a dying art in 2014. York is an affluent looking city, but the he march also wove through a large, inner-city housing estate. This should be the heartlands of public solidarity, but curtains stayed drawn, doors, stayed shut. A few curious faces stared from windows and doorways, but in days gone by, the streets would have been lined with the very working people we were there to defend. As the tail of the march came into sight, public supporters would have joined the procession, cheering and chanting along.

I was there to give a speech, which is linked below. Burning to persuade people how the chaos unfolding at the DWP was ruining lives, I put everything I could into finding the very best weapon-words I could. Dave filmed me with his phone and immediately uploaded the video to YouTube.

As we started the monotonous, fluey, drive home, twitter came alive, RTing, begging, pleading and cajoling supporters, the great and the good to send the link viral. It seemed to touch hearts, articulte a great pain that grows daily unchecked.

Still today the link is being shared as hundreds desperately try to spread the word and as I write this post, over 1200 have watched the film. Wonderful though that is, it's far from viral, ironically underlining the very points I make in the speech about a group of sick and disabled people no-one can seem to hear or see any longer.

If you care about this country, whatever your politics, this speech is for you. I travelled for two days with a fever and raging crohn's disease to give it. I suffered an American chain that dares to use the name restaurant. I suffered AC/DC for goodness sake!!

So for all those people so desperate for you to watch it, share it and persuade others to watch it too, please decide that 9 minutes isn't too long to spare to right a great wrong unfolding before your very eyes.

2 Thirds refused PIP

This rather worrying report claims that just 37% of standard claims for PIP were successful.

If it's true, it's even more worrying than we feared.....

http://www.localgov.co.uk/Two-thirds-turned-down-for-new-disability-benefit/35597

Magic Monday

Here's my offering for this week's "MagicMonday" action . .
I've opened up the comment thread to all now and hope a few of you might share you actions to inspire others. http://diaryofabenefitscrounger.blogspot.co.uk/2014/02/magic-mondays.html?m=0

"Dear Sir,

I wanted to let your readers know about Mark Wood.
http://www.mirror.co.uk/news/uk-news/disabled-mark-wood-starved-death-3194250

Mark was 44 and suffered from severe mental health problems. Amongst other things, he was diagnosed with  aspbergers and OCD (obsessive compulsive disorder)

Last year, Atos Healthcare, the French IT company who carry out Employment & Support Allowance (previously incapacity or "sickness" benefit) judged that Mark was fit to work. They didn't consult his GP who has since said that if he had been consulted he would never have recommended that Mark could work.

His ESA was stopped along with his housing benefit, leaving him just £40 per week to cover all his expenses. Food, shelter, warmth.

Mark died of starvation just 4 months later. When they found him, there was just a banana and a tin of tuna in his home.

It is the UK and the year is 2014. Yet people are starving to death, alone in their homes. They do it discreetly, out of sight, but they die just the same.

If Mark was an isolated case, then maybe, just maybe, we could forgive his tragic loss. Maybe the pain his family feel would have been less crushing.

But he's very far from an isolated case. Stephanie Bottril, Karen Sherlock,
Mark and Helen Mullins, Denis Jones, Jacqueline Harris, David Barr, Elaine Lowe, Elenor Tatton, Linda Wootton......

The list goes on and on now. Every day a different death linked directly to government social security "reforms" yet we, the public, seem determined to look away.

I never thought I'd see the day when I had to warn people, right here in the UK, that often vulnerable sick or disabled people are dying and no-one cares.

In 2011/12, 10,600 people died within just 3 months of being found "fit for work" by the DWP. Since then, they've refused to publish further statistics at all.

When this government speaks of "welfare reforms", I'm fairly sure readers don't assume that they will cause tens of thousands of deaths. I just hope we all wake up  soon, before they are joined by thousands more

Very best

SueMarsh"