I invited David to share his viewpoint and concerns here so that we can consider them together. Please share your thoughts and comments in the comments below.

David Gillon

“Disabled Benefit Recipient”. What word just popped into your head? Scrounger? Faker? Fraud? I walk with crutches, I’ve been called all of these, and worse, by complete strangers in the street. I’ve even been physically assaulted simply for walking while disabled. And this was going on even when I was still in full time employment and claiming no disability benefits whatsoever. Nor is any of this unusual, it is in fact the near ubiquitous experience of disabled people in contemporary Britain after years of deliberate and calculated demonization of disabled people by the media. And in the past 18 months it has become far, far worse,  the attacks from the tabloids coming in near daily. We have our own names for them now, the Hate Mail, the Vexpress, the Scum, because we know that all we can expect from them, and their puppetmasters at the Department of Work and Pensions, is their hatred and the carefully selected stories calculated to convince you that we are all fakers living a life of luxury because we’re too lazy to work.

And that’s a problem for disabled people, and for 38 Degrees. Society has been brainwashed, you might not know it, you might protest against it, but brainwashed it has been, beliefs eroded by story after story, until what leaps to mind isn’t a recognition of people needing support, but a presumption of fraud and idleness and luxury. The disability benefit fraud rate isn’t the 75% the tabloids would have you believe, it is 0.5%, less than the rate of internal DWP error.

I want to put brainwashing aside for a moment and talk about the things the Tory press simply haven’t been telling you at all (and sadly disabled people now have to number the BBC amongst the Tory press). When the Coalition took power, they swore to protect the most vulnerable of all, then promptly turned around and closed the Independent Living Fund, the benefit paid to the most disabled people of all, those who need aid with nearly every aspect of their lives.

Next up for the axe was Disability Living Allowance, the DWP telling us that there had been inexplicable rises in the numbers of people claiming it. Campaigners pointed out that DWP hadn’t allowed for such esoteric factors as people retiring with the benefit, or children claiming it, because, no matter what the Chancellor may have claimed repeatedly, DLA is not an out of work benefit. DLA is available to any disabled person who passes its strict criteria – yes, no matter what the Tory press tells you, it is tested, and frequently retested unless you have a lifetime award. They aren’t happy with the number of those, either, but as often as not a disability is for life, not just for Christmas, so what’s the point of testing year after year to see if a leg has grown back yet? All miracle cures gratefully received!

Lose your DLA and you lose everything, Carers Allowance, Motability and so on. The tests for DLA are incredibly strict, I struggle to walk and I don’t pass, you need to be unable to walk even 50m to get the Mobility Component of DLA, but the Coalition aren’t satisfied and want to replace it as with Personal Independence Payments (hiding the fact that it is even a disability benefit), with tests designed to exclude 20% of those currently getting DLA, not because they aren’t disabled, just because. And in an act of incredible spite they want to take DLA Mobility Component away from anyone in residential care, which will mean disabled children not able to get home to see their parents, disabled adults not able to go out to the cinema, the pub, or home to their partners and children. The Low Review has just been published to detail all the damage this one change will cause, but we still need to fight it and there is so much more to fight. Meanwhile Tax Credit changes will cost families with disabled children £1400 a year.

The changes to housing benefit have drawn quite a lot of press coverage, but relatively little on how serious they are for disabled people who are facing multiple hits from the changes. Younger adults will be expected to live in ‘houses of multiple occupation’, but that could be seriously damaging to someone with mental health or other issues. Then people are going to be docked for having spare bedrooms, but disability means equipment, wheelchairs, ventilators, partners not being able to share beds, and they all have to go somewhere. I saw a story recently, a family of five, three of them disabled, they can’t survive without 5 bedrooms, but 5 bedrooms will be unacceptable under the new regime, and on top of that the capped percentage of average local rents simply won’t cover the cost. The National Housing Federation estimates 108,000 disabled people could be forced out of their homes because of this.

The last area I want to focus on is Employment and Support Allowance, the replacement for Incapacity Benefit. This has been an ongoing disaster since Labour introduced it and brought in the French multinational ATOS to run the Work Capability Assessment testing. There are stories about ATOS ‘medical professionals’ indulging in homophobic rants, needing to have the patient explain what their disability means, reporting results from tests they haven’t completed, the list goes on. The GMC had to issue a formal reminder that patients must be put first at all times and that honesty is a professional requirement (you really couldn’t make this stuff up!). Many of the ATOS centres are not wheelchair accessible, the vast majority have no disabled parking, there are other failings, ATOS claim they’re good enough. My own ATOS experience was good by comparison with many, but I’m still traumatised by it a year later and it ended up as evidence in a Select Committee Report (and now I am facing a retest). I got off lightly, Black Triangle report there are now 16 documented post-WCA suicides. ATOS, meanwhile, have been threatening legal action against disability websites collecting and publicising these stories. So what did the Tories do? They made the tests harder to pass. Fail the WCA and you’re thrown onto Job Seekers Allowance, but I’ve been there, done that, and JCP admitted after my complaint that the only way they could cope with my disability was by ignoring it. It’s estimated that retesting of Incapacity Benefit recipients as part of the migration to ESA will see 600,000 to disabled people thrown onto JSA (and existing statistics from ATOS testing suggest the figure could be over 1 million). Meanwhile, 1 in 8 ATOS decisions is overturned at appeal, a load which is costing the country £50m a year and has the Tribunals Service groaning at the seams.

As if that wasn’t bad enough, the Coalition plan to introduce time-limiting of ESA  from April. This will mean that those in receipt of Contributory ESA will lose their benefit after 12 months unless they are so disabled that there is no possibility of them ever working (and people with, for example, severe MS, or even terminal cancer, have regularly failed to make this grade). For many of us, I’m one, that means losing all eligibility for any benefit, for so long as we have any assets (such as pension funds) or if any member of the household has even a pittance of an income (a figure actually lower than the minimum wage). 700,000 people the government admits are too disabled to work will be affected by this, some will be able to claim income related ESA, but for 400,000 of us it means sacrificing our savings and pensions, or becoming absolutely dependent on partners, with all the stress that will impose on a relationship.

Most of these changes are built into the Welfare Reform Bill, which has almost completed its passage through the Lords. We had hopes of hamstringing it there, but the Coalition gerrymandered it into Grand Committee, which contentious bills are never meant to go through, and now a single vote can kill any amendment, while peers opposing the bill say so much information has been left out it is impossible to tell just how bad the effects will be. We had hoped to get the support of non-disabled groups, such as 38 Degrees in opposing it, but our cries for help went unheard. What happens next scares many of the disability campaigners, we’ve just last week heard of a double suicide by a veteran and his intellectually disabled wife who had struggled to access benefits, our fears are that there will be many, many more, making the post-WCA suicides just the forerunner of mass tragedy. Go to the website Where’s the Benefit? (where I blog regularly) and you’ll find a link to the Samaritans on the front page. That link is there because we regularly have people respond to our posts with a quiet, considered discussion of their suicide plans for when the cuts take their benefits away. And it is fear of what is to come that has us so desperate for support from the non-disabled groups. We can spread the word amongst the disability community, when we’re well enough, but precious few others come to our websites or read our blogs, we’re screaming into the darkness, but no one hears us.

Which brings me back to the problems of brainwashing. 38 Degrees is based on a democratic model, its campaigning driven by the demands and interests of its members, and that’s no bad thing in theory. But we aren’t dealing with theory, we’re dealing with messy practise, and not all campaigns are created equal. Crips aren’t cuddly, we aren’t cute, we’re positively demonised in the national psyche. How do we win a popularity contest?

The answer is that we don’t, we can’t, we’re labouring under too heavy a load of anti-disability propaganda that has shaped views of us as a minority of lazy, selfish, fakes and frauds, living lives of luxury with our Bentleys and our yachts. The truth is far different, but the media aren’t interested in telling you the truth. So an organisation that should be helping, but which clings to a democratic model we’ll never be able to access, is obviously one disabled people find a little bit troubling.

When we didn’t even make the latest poll, no matter DLA related issues were clearly the second most highly rated issue on the UserVoice pages, never mind the several thousand missing votes that 38 Degrees had been claiming to be investigating for 8 months, things became a little fraught.

I blogged about this in annoyance, expecting to be a lone voice, but I’d lanced a upwelling of frustration within the disability community, and the tweets of support and the visits to my blog just kept climbing to levels I’d never dreamt of seeing. Kudos to David Babbs for having the nerve to post in reply and then talk to me over the phone, and I’m now reasonably happy to accept that nothing was done deliberately, but the annoyance across the disability community was, and is, very real and that is something that we, and 38 Degrees, need to address. (This blog is part of that process).

The democratic model is praiseworthy, but it can’t address all issues, and most specifically it can’t address the needs of marginalised groups, and their inability to access that model may traumatise them further. The democratic model condemns you to doing what is trendy, not necessarily what is right and desperate need is not the same as well known, nor as popular

Remember, slaves didn’t have the vote, no vote told Wilberforce and the abolitionists that they needed to campaign for what was right. Women didn’t have the vote, no vote told the Suffragettes to get out there on the streets and fight for their democratic rights. Democracy is a luxury those who live on the disenfranchised margins of society can’t afford and can’t access, and 38 Degrees owes it to itself to find a way to let them be heard.

As for what you can do to help us now, a welcome first step would be to vote for Pat’s Petition which aims to get the Welfare Reform Bill paused for review in much the same way as the NHS bill. Beyond that, watch out for actions by Black Triangle, the Hardest Hit and Disabled People Against the Cuts, or take a look at our online presence at websites such as the Broken of Britain, Diary of a Benefit Scrounger and Where’s the Benefit, or vote for 38 Degrees to take action. And when the media tells you that we’re all fakes and scroungers, vote with your feet and take your custom elsewhere.

Volunteers in the 38 Degrees office have spent the last few days analysing every single response to the online poll using the techniques and tools normally used when 38 Degrees members are asked what they want to do next (there’s an in-depth look at how this works here, here and here).

Below is a look at how 38 Degrees members answered the question “what is the best way to stop the energy ripoff?”

The results of the vote gave two priorities:

• Make energy tariffs clearer
• Energy companies should be more upfront about what deal is cheapest for you

It is not surprising that we all want clearer energy pricing, even accountants and A-Level maths students can’t understand gas and electricity bills!

What next?

These results will help determine what we focus on in coming months but as always they are just the start. They give the staff team a direction for researching campaign opportunities and developing ideas for action. We won’t be able to do everything immediately. Sometimes we have to wait for the moment when we can effectively create change by moving together. And as the campaign develops the team takes in a constant stream of ideas and feedback from members using email, Twitter, Facebook and the campaigns suggestions site.

What do you think?

What do you think of these results? Are there any priorities that you think should be on the list?

Gas and electricity bills are going up and up. The big energy companies have just hiked their prices up by an average of 21%. The energy companies are making big profits, while the rest of us are being hit hard.

Something needs to change or it could be a very cold winter.

38 Degrees members have voted to work together to tackle rip-off bills. We’ve had enough and together we can do something about it. So now we need to decide what we should do.

The 38 Degrees office team has been consulting experts from organisations like Consumer Focus and Which? to draw up a list of campaign ideas.

We’ve got some choices to make – here are some of the options:

• Force energy companies to make their tariffs simpler so we can tell which is cheapest.
• Ask the government to use the extra cash from VAT on higher energy bills to help those struggling to heat their homes.
• Demand a public inquiry into the power of the big 6 energy companies.

38 Degrees campaigns like stopping our forests being sold off, standing up to Rupert Murdoch, and protecting our NHS – were chosen by thousands of 38 Degrees members voting together. We know that when we work together we can make change happen.

So now please help plan the campaign against rip-off gas and electricity bills by taking the short survey here:

https://secure.38degrees.org.uk/energy-bills-poll

Ideas have been suggested on the 38 Degrees Facebook page, Twitter, the blog, on the website and by email. Once a picture started to emerge, a team of volunteers in the office shortlisted the most popular. For more information on how the team sorts this data have a look at this blog.

Thousands of 38 Degrees members voted on the campaigns you thought were most important. Using spreadsheets and other tools the team has listed the results in order of the priority and urgency you felt on these issues.

Below is a graph of the poll results – it’s a little small. If you want to see the results in more detail just click on the image a bigger graph will appear.

The top results are:

• Robin Hood Tax: Continue to push for a Robin Hood Tax, that would give billions to tackle poverty and climate change
• Save the NHS: Continue the campaign to stop Lansley’s NHS plans
• Clamp down on tax dodging: Continue to demand a real clampdown on tax dodging
• Stop Rip off bills: Stop rip-off gas and electricity bills
• Save our Forests: Continue speaking up for our forests and challenge future attempts to sell them off
• Run research & Local NHS: Run local NHS campaigns to expose cuts to the NHS
• Reform media laws: To stop media moguls like Rupert Murdoch ever getting so much power again
• Campaign against secret lobbying: Step up the campaign against secret lobbying
• Campaign against planning laws: Continue the campaign to protect our countryside and local communities
• School meals: Make sure every child from a poor family receives a free school meal

What next? 

These results will determine what we focus on in coming months. They give the staff team a clear direction for researching campaign opportunities and developing ideas for action. We won’t be able to do everything immediately. Sometimes we have to wait for the moment when we can effectively create change by moving together.

What do you think? 

What do you think of these results? Are there any other campaigns you think should be on the list?

There wasn’t much in it, but yesterday we lost the NHS vote we’d campaigned on in the House of Lords. 262 Lords voted in favour of a special scrutiny committee for the dangerous NHS plans. 330 voted against. If just 35 more Lords had voted the right way, we would have won the vote.

That doesn’t mean our campaign didn’t have a big impact. Members of the House of Lords were talking about it all day, and there were mentions of our petition all over the media. During the debate, Lord Hunt said: “That is but one small reflection of widespread concern within the community about the NHS.”

But it’s nowhere near over yet. We need to pick ourselves up, dust ourselves off, and get ready for the next breakthrough opportunity that comes up on the NHS. Yvonne, a 38 Degrees member, said on the Facebook page, “We may have lost the battle, but we have not lost the war!”

Here’s what some other 38 Degrees members have been saying since the news came in:

• Mari: “38 Degrees ‎is a shining star in rather dim times!”
• Anthony: “Keep the spirit up, everything is possible.”
• Jan: “I will most definately continue to campaign…”

Lots more members got in touch with ideas about what we could do together in the future:

• Emily: “Let’s see if we can facilitate LOCAL protests (not just the big city ones).”
• Ann: “It seems there were about 150+ peers who did not vote; I wonder why and maybe we could target these next time?”
• Adam: “The best option is for us to continue campaigning. There may be more amendments during the committee stage and third reading”
• Julie: “We have lost two battles but NOT the war…we actually got a lot of support from the cross benchers and some lib dems re supporting the Owen amendments, so the ground work has been done.”

What do you think about what’s happened? What should we do next together to help save the NHS?

December 2010 – January 2011: 38 Degrees members start organising local get-togethers, to discuss together what Lansley’s plans might mean for our health service. In many cases, local GPs come along and share their thoughts. We start emailing our MPs and discussing their replies.

March 2010: Hot on the heels of our success in stopping the government is selling off England’s forests, 38 Degrees members vote to make saving the NHS the top priority. We launch a new petition, which was quickly signed by hundreds of thousands of us. 38 Degrees members start organising petition deliveries with their local MPs.

April 2011: The NHS petition passes a quarter of a million signatures. Our campaign, along with a huge outcry from other experts and patient groups, gives the government the jitters and they announce a pause in their plans while they hold a “listening exercise”. A Sky News political correspondent claims that a government sources told him the government’s change of tack is “the result of a lobbying campaign by a pressure group called 38 Degrees.”

Thousands of us take part in a survey to decide the priorities for the NHS campaign. We decide we need to really turn the heat up on local MPs. More and more local petition deliveries are organised across the UK.

May 2010: A Sheffield 38 Degrees member, Geraldine O’Connor, who relies on the NHS to treat her epilepsy, secures a meeting with Deputy Prime Minister Nick Clegg. She e-mails 38 Degrees members asking us to support her. The petition passes 350,000, and a large contingent of Sheffield 38 Degrees members join Geraldine to deliver a great pile of signatures to Nick Clegg.

Thousands of 38 Degrees members donate to pay for eye-catching newspaper ads showing Andrew Lansley with his fingers in his ears: our verdict on his approach to the “listening exercise”. Over 100 more petition deliveries to local MPs take place across the country. Over 25,000 38 Degrees members make their own personal submissions to the “listening exercise”, and on the day it closes we carry a copy of our petition into the Department of Health on a stretcher.

June 2011: The government announces changes to their plans following the “listening exercise”. We’ve made some progress: for example, “GP commissioning” has been opened up to local scrutiny and a wider range of health experts will be involved. But there is still plenty to worry about, and so not surprisingly, 97% of 38 Degrees members vote to continue the campaign and look carefully at what the revised plans will mean for our health service.

July 2011: 38 Degrees members donate tens of thousands of pounds to hire expert lawyers to go through the revised plans with a fine tooth comb. We assemble a legal team including Harrison Grant solicitors, specialist barristers Rebecca Haynes, (Monckton Chambers) and Stephen Cragg (Doughty Street Chambers) and Peter Roderick of dutytoprovide.net. Detailed legal analysis begins.

August 2011: Our Legal team produces two detailed reports, covering changes to the Secretary of State’s legal responsibilities and issues concerning competition and procurement law. The worrying findings are reported widely in the press. The key concerns are summarised here: http://www.38degrees.org.uk/page/content/NHS-legal-advice/

September 2011: Tens of thousands of 38 Degrees members contact their MPs asking them to respond to the concerns identified by our independent legal experts. Senior Liberal Democrat Shirley Williams reads our legal advice and announces she can’t support the government’s changes – making front-page news in the Observer newspaper. Andrew Lansley and a number of Conservative MPs accuse us of misrepresenting our own Legal experts. Our legal experts produce detailed rebuttals. 38 Degrees members are mentioned dozens of times in parliament, and almost half of English backbench LibDems refused to support the government.

The legislation moves to the Lords – and 38 Degrees members start discussing what we can do to influence them. Thousands contribute to the plan, and donate over £50,000 to pay for the new technology and tools we need to put it into action.

A key Lords committee publishes a report echoing the concerns raised in our independent legal advice. Thousands of 38 Degrees members start writing personal letters to members of the Lords, asking them to protect the NHS.

October 2011: Two days before the vote, Lord David Owen announces he will table an amendment to set up a special scrutiny committee to look into many of the concerns we have raised. 160,000 of us sign an emergency petition urging the Lords to back it – gaining huge amounts of attention within the House of Lords and across the newspapers. We come within 29 Lords of winning the vote.

Autumn / Winter 2011-2012: Here are some of the things which 38 Degrees members have said we could do together in the coming months:

· Organise more expert briefing sessions between Lords and our independent legal team
· Travel down to London to meet with the Lords and Baronesses we have been writing to over the past week.
· Sign more petitions and send more e-mails directed to House of Lords – they’re not used to it, and it creates a real stir!
· Turn the pressure back on David Cameron and our MPs – they are desperate for the fuss to die down, we can prove to them that it just won’t if they keep pushing these reforms forward.

We can still win this campaign – if we keep working together!

The results of our vote gave two clear priorities for persuading members of the House of Lords to make the crucial changes to the NHS bill:

• get in touch with emails and letters, asking Lords to make amendments to the bill
• find experts to meet Lords members and tell them what’s wrong with the NHS plans

Over the next few days the small staff and volunteer team will be getting started on turning these poll results into action. What do you think of the results? Are there other things you think we should be doing together?

Ideas have been suggested on the 38 Degrees Facebook page, Twitter, the blog, on the website and by email. Once a picture started to emerge, a team of volunteers in the office shortlisted the most popular. For more information on how the team sorts this data have a look at this blog.

Thousands of 38 Degrees members voted on the campaigns you thought were most important. Using spreadsheets and other tools the team has listed the results in order of the priority and urgency you felt on these issues.

The results 

(Click on the image to enlarge)

The top results are:

• NHS: Continue the NHS campaign to protect our health service from privatisation and competition law
• Planning: Start a campaign against the recent changes to Planning laws
• Tax-dodging: Demand a clamp down on tax dodging
• Banks: Push for taxpayers to get a fairer deal from bailed-out banks
• Energy Bills: Stop energy companies imposing rip-off increases to gas and electricity bills
• Arms Dealing: Stop UK arms companies selling weapons to oppressive governments
• Forests: Keep speaking up for our forests and challenge future attempts to sell them

What next? 

These results will determine what we focus on in coming months. They give the staff team a clear direction for researching campaign opportunities and developing ideas for action. We won’t be able to do everything immediately. Sometimes we have to wait for the moment when we can effectively create change by moving together.

It’s clear that the NHS remains a big priority, so we’ll carry on working to protect it from privatisation and other threats as the Bill passes to the House of  Lords.

On forests, we’re currently meeting with the Government’s Forest Panel in the aftermath of many successful forest get-together events to hand in our petition and demonstrate just how important the protection of our forests are to 38 Degrees members.

Some new campaigns might also emerge based on things that pop up in the outside world. You can still suggest any new campaign ideas through our member’s forum and vote on the issues that are important to you.

What do you think? 

What do you think of these results? Are there any other campaigns you think should be on the list?

Over the past couple of weeks, 38 Degrees members has been voting on what our next steps should be with the Murdoch campaign by voting in a poll.

Should we say job done and stop campaigning? Or should we be on the look-out for Murdoch trying new ways to control our media? Or perhaps we have an opportunity now to campaign for higher media standards more generally?

The results 

Overall, 38 Degrees members voted that this should be one of the many campaigns that we run and only a small percentage of members think that we should stop campaigning.

The results on what aspect of the scandal concerned 38 Degrees members most were relatively close. The most popular course of action seems to be to focus on demanding news laws to address problems with the excessive power and influence of media barons.

How much should we keep working on phone hacking and media corruption?

If you think we should keep working on media corruption and the phone hacking scandal, which aspect of the scandal worries you most?

If you think we should keep working together on this campaign, what do you think we should focus on next?

We started off suggesting ideas on our Facebook group, Twitter, our Blog, on the website and by email. Then volunteers in the office worked though the thousands of ideas .

Once a picture started to emerge, we drew up a list of the most popular. Then we all had the chance to vote on the campaigns we thought were most important. In the last few days volunteers in the office have been working through the responses.

The results 

The top results are:

• NHS: Make sure the NHS isn’t run down or privatised
• Banks: Push for taxpayers to get a fair deal from bailed-out banks
• Fuel Bills: Stop energy companies imposing rip-off increases to gas and electricity bills
• Foreign Arms Dealing: Stop UK arms companies selling weapons to oppressive governments
• Forests: Keep speaking up for our forests and challenge future attempts to sell them
• Tax-dodging: Demand a clamp down on tax dodging

People who voted ‘a lot’ for each of the campaigns. Click the image for the full data.

What next? 

These results will determine where we put most of our efforts over the coming months. The give the staff team a clear steer as to where to focus their efforts researching campaign opportunities and developing ideas for action. We won’t be able to do everything immediately. Sometimes we have to wait for the moment when we can effectively create change by moving together. For some campaigns, a lot of members voted that we shouldn’t campaign on them at all.

It’s clear that the NHS is still a big priority for us, so we’ll carry on working to protect it from privatisation and other threats. Already we’re getting some independent legal advice to see exactly what Lansley’s new plans for the NHS mean.

On forests, we’re currently collecting everyone’s answers to the Independent Panel on Forestry’s questions. We’re going to hand them over, so that the panel knows the sheer number of us who are passionate about protecting England’s forests.

The next few months might be a little quieter with summer holidays and parliament in recess. Some new campaigns might also emerge as a reaction to things that pop up in the outside world and taking action can’t wait.

What do you think? 

What do you think of the results and are there any campaigns you think should be on the list?