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“On Being Demonized” – the perspective of a 38 Degrees member living with a disability

December 1st, 2011 by

Below is a guest piece by David Gillon, a 38 Degrees member and blogger who raised some significant questions about 38 Degrees’s people powered system of choosing campaigns. One of David’s main criticisms is that in a system where the most popular campaign suggestions get prioritised, it can be difficult for marginalised voices such as people living with a disability to be heard.

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 people living with a disability 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 people living with a disability, 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 people living with a disability 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 people living with a disability 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 person living with a disability 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 children living with a disability not able to get home to see their parents, adults living with a disability 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 people living with a disability 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 people living with a disability 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 people living with a disability 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 people living with a disability 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.

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  • http://thepotterblogger.blogspot.com/ George W. Potter

    The only problem is that campaign suggestions on disabled issues won on 38Degrees (two similar campaigns coming top individually and more popular than the NHS campaign when combined) but then 38Degrees tried to merge them and in the process lost thousands of votes. That was then and despite promising to restore the suggestions to the voting system, hasn’t done so and in the process has effectively ignored the democratic model. So the democratic model can work for disabled people – it just depends on having an organisation which actually cares.

  • Angie D

    My QoL was already very poor but it has been taking a dive of late largely I think as a result of the wholly inaccurate demonization by the press of disabled people. Changes have recently been made to Motability insurance so that in future named drivers have to live within 5 miles of the vehicle holder. Thanks. I can no longer get to hospital appointments, or get out unless I am fit to drive which is not always the case.
    Last year I wrote to my MP  as I am having to find half the £91 per month interest on my mortgage. My benefits do not take into account this housing cost. The reply was that some people in cities were making money out of the rules for mortgage interest assistance. 
    Why does DWP and Lord Sterling not target more effectively the abusers instead of penalising the genuine claimants? I suspect this is because we are such easy targets who do not tend to have mass support from the public.
    I don’t know how some members of the mass media sleep at night. By the way I paid N.I. before I became injured, which is an insurance policy in the event that an individual becomes incapable of work. 

  • http://twitter.com/chiller R Coldbreath

    Beautiful article – I’m sharing it as widely as possible.  Thank you so much for writing this, David.

  • Ant Lea

    Excellent blog which summarises just how much is going on to work against those with disabilities at the moment. Just like environmental and child welfare campaigns, we can’t help picking the causes that make us go ‘aaah’. Disability doesn’t. Added to this is the constant flow of stories of benefit cheats but never the stories of how the lives of people with disabilities are made hellish by the very systems that we have in place to support them. I work with children and young people who care for family members with disabilities. The figures for the amount of genuine benefits that we have helped families to claim is attrocious – 2009/ 2010 – £494,800 – 2010/2011 – £408,950. This is just in one borough! Almost £1million over 2 years. Without a charity providing this kind of support this money would never have been claimed. Doesn’t really fit with the popular image of benefit scroungers, does it? 

  • Dianedalziel

    I’m pleased you’ve had this opportunity to air these grievances and bring information, that is obviously frequently hidden, to the attention of a wider audience.  I too will share this information and be willing to sign petitions. and let’s hope that many others get behind you too!  

  • Anonymous

    This is an incredibly important issue, and one which I think 38 degrees would do well to act on. An uncaring government is pursuing policies which are inflicting misery and suffering and, in some cases, death on disabled people. I know that sounds histrionic, but I honestly believe it to be true. I would rather we threw our weight behind disability issues now than look back in a few years at the end results and ask ourselves ‘how did that happen?’

    Please 1) sign Pat’s Petition and 2) start up a 38 degrees campaign along the same lines.

  • Sleeping Storm

    Goodness knows I hate this Government and the way that it’swrecking life for all but the wealthy. However, there are many people within demonised groups who fall outside of the public perception of that group and also some within those groups who support that public perception. A clear case in point is the media/government demonisation of public services staff who are the people we should be paying the highest wages to but instead get called scroungers for fighting for their negotiated rights (I am not a public service worker). These catch-all descriptions and policies mean that many people suffer and some who shouldn’t get off scot-free. Unless we provide the resources to individualise every case (which no government will) this will always happen. I am personally aware of a disabled person who gets higher rate Mobility Allowance and came 3rd in his school’s cross country competition.  I am also personally aware of someone who declared herself depressed as soon as the rules for single mothers on Income Support changed. She has claimed benefits for 21 years and owns a house worth £165,000 paid for by Housing Benefit of which she has £100,000 equity. That does make people bitter. I am also aware of 2 people who have MS and can only move about in wheelchairs who are having to be tested for their ability to work. All of these things are unfair. This is an unfair society that elected a Government that was going to make things even less fair. It won’t change. I believe that 38 Degrees should concentrate its efforts on areas where the majority currently benefit and which are in danger. In this way a greater number of people are on board to protect something the majority want protected. I am really sympathetic towards you, David, I just feel that some are unwinnable battles and individualising any 38 Degrees campaign means it’s destined for failure . Sorry. =(

  • Kathiec1

    Some people are rather tunnel visioned I’m afraid and are inclined to believe everything the media push in their line of vision. Look at the lives, right across the board, the media and mindless bullies have ruined over the years. I have stopped buying any newspaper and make my own mind up when it comes to ‘News’ on tv etc. Sadly there are many people who know how to very cleverly fool and play the benefits system. . . the benefit cheats . . and they are the ones who are robbing the tax payers and also ruining peoples lives, who genuinely need that financial support. Those clever fraudsters wld also be the first to sign a petition with any caring organisation working on behalf of those with genuine needs. A solution may never be resolved, not until they are able to seperate the wheat from the chaff and stop taring everyone with the same brush. 

  • Anonymous

    I wholeheartedly agree with this. I think that the way that this government has pushed the burden of the cuts onto disabled people is disgusting. 38 degrees should take up this cause.

  • Jaki Tean

    Excellent! I have tried and tried to get 38 Degrees to take up our struggle but it seems to have fallen on deaf ears

  • Daphne Cavanah

    I do not read national papers or listen to the news as I find it all so depressing and brings me down. I am not disabled, but after my hip replacement I had a small taster of the restrictions and limitations on my life as a result of a lack of mobility.

    I feel ashamed with myself for being so ignorant to the issues David Gillon has raised above. Please rest assured I for one do not consider you, or any disabled person, to be lazy scroungers. I know plenty of able bodied people who do not want to work because they get more on benefits. The stricter testing should be applied to these people.

    A disabled person has a heavy enough burden to carry through life as it is, without loading more upon their already broken body.

    What can 38Degrees and the team do to help and support the likes of David Gillon?  

  • http://www.facebook.com/people/Kevin-James/100002177166941 Kevin James

    AFTER ATOS set up by a fellow lone disabled has been taking the feedback from disabled who have gone through the Atos Assessments. We believe and wish 38 Degrees would back the call for an accounting and counting of all the disabled who have gone through the Atos assessments and DWP WCA and be able to give a true accounting.  After Atos wish 38 Degrees to take this cause on and back After Atos which is independent and user led and created by someone who has  nursing health professional background, who has gone through the awful system herself as a now disabled, as a daughter of a dementia parent and godchild with severe challenging behaviour and autism, and who like many disabled sites and activism has been attacked and had website brought down and been on the end of legal challenges. We feel that 38 Degrees has been ignoring the current plight and suffering of the disabled and as you have said when it was raised several times you gave it to the rest of the 38 DEgrees and as most did not think it of sufficient importance you wrote back to say you would not back as there was not sufficient interest in the suffering and abuse of disabled. I hope you change you mind now. Also as an ex but still registered nurse I find it appalling and arrogant that you claim victory over the NHS reforms and welfare reforms as belonging to yourself and yourselves only. There are other people on the planet who need equal recognition and respect and support.

    See website http://www.afteratos.com/   and you can find your way round the information and feedback witness testimonies. I hope, this time that 38 Degrees will back the disabled and the After Atos call for a proper counting and accounting of the disabled. By their own, not by that paid for idiot and planted man Prof Harrington. Who makes all the suggestions against the disabled, such as taking away appeals and removing all money if you chose to appeal and advocating against basic human and civil rights when it comes to the treatment and dealing with disabled. I hope this time you will join and support. and get in contact. 

  • Anonymous

    So pleased someone has taken up the gauntlet on this one. Being a voice for the disabled might not be as glamorous as some other campaign’s, such as saving woodlands or circus animals but it’s far more necessary.

  • Kb32904

    “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.”

    Well said Sir!

    I confess to having lost faith with 38 degrees after seeing DLA related issues beiing consistently overlooked.
    Yes I have a vested interest as I am in receipt of DLA but 38 degrees is one of the biggest pressure groups & its lack of desire to help us, frankly, made me sick & I vowed not to support any other campaigns that I would ordinarily support.

    I thought 38 degrees was representative of its members (including the non-donating ones) but, unless some recognition of the DLA issues is taken seriously & actioned accordingly, I will have to agree with that Lord who called us a ‘rent-a-mob’ during the recent NHS campaign.

  • Jdbobs

    fantastic, i asked 38 Degrees to take on our fight months ago when forests were being saved. i got no reply if i rember rightly, i do remember thinking they think trees are more important than us, valid tho the forests are n i helped in that campaign. Takes a while to be heard when ur not as tall or majestic as a tree. xxx

  • Gadfly

    Very valid comments, any kind of assault is wrong particularly on weaker members of society.  This being said we have to figure out a way of recognising scroungers who DO exist – the council kings, the people who have never worked in their lives but manage very nicely thanks.  The blind guy who refs rugby on a weekend, the guy in a wheelchair who was caught fixing walls on a hobble etc.  These are the people against whom anger should be vented, lets find them and throw the book at them.  They are a blight on society (all of us able and disabled).

  • http://twitter.com/Quinonostante Dawn Willis

    It’s about time that 38Degrees recognised the seriousness of the situation facing the disabled, and began an serious and considered campaign.

    The Government and Media approach to people with disabilities in receipt of welfare benefit has created a division within society, not only further marginalising these groups, bu actually making them the target of hatred and venom.

    38Degrees has had our support – it’s time they paid it forward.

  • David Gillon

    ” I am personally aware of a disabled person who gets higher rate Mobility Allowance and came 3rd in his school’s cross country competition.  I am also personally aware of someone who declared herself depressed as soon as the rules for single mothers on Income Support changed.”

    Someone reported me to the Benefit Fraud hotline at the start of the year, the stress of which left me in severely increased pain for months. They said I was working full time, yet I’m lucky to get out of the house for 4 hours a week. What people think they know about someone’s disability and the reality are frequently very different. Much of disability is invisible, much of disability is variable, you can’t see pain, you can’t see the mental effects. I can do things people believe are inconsistent with my disability, but they don’t have the medical knowledge to understand the variability, they can’t see the pain I experience during or after, nor do they see the months, in one case an entire year, it can take me to recover afterwards. Equally many disabled people put off applying for disability benefits because of the sheer stress involved,  that’s why I initially claimed JSA, it’s why I’m sitting here in a complete funk over having to fill in the huge ESA form again, with the hand to hand combat of a Work Capability Assessment to come, it’s why I haven’t reapplied for DLA, though I can now put together a good enough argument as to why I should get it. When Time-Limiting kicks in in April and I lose my ESA, I’ll have to push myself to make that DLA claim. It doesn’t mean I wasn’t eligible for it before, it doesn’t mean that I’m trying to defraud the government now, it just means that my situation wasn’t quite desperate enough to force me to apply before, and those stresses, those counter-intuitive and variable effects that are the reality of disability, are true for hundreds of thousands if not millions of other disabled benefit claimants. But the public don’t see that.

  • David Gillon

    “Sadly there are many people who know how to very cleverly fool and play the benefits system”

    The government want you to believe there is an overwhelming amount of fraud, the tabloids tell you ‘they’re all at it’ (and the PCC tells us when we complain that that is a perfectly acceptable accusation, that the Press Code protects only individuals, that discrimination against groups is perfectly legitimate). The truth is that the rate of disability benefit fraud is the lowest of all benefits bar the old age pension, and that the rate of internal error by the DWP is actually higher. Think about that, all the pressure and stress that disabled people are being put through to prove their disability, pressure that has led people to kill themselves, and the DWP lose more internally than they could ever hope to save through WCA and whispers in the press. Disabled people see the pressure for what it is, a cynical attempt to reduce costs by making benefits as unpleasant to claim as possible, no matter the consequences.

    “It is far better that 10 guilty men go free than one innocent man is wrongfully convicted” Commentaries on the Laws of England, William Blackstone

  • David Gillon

    There’s nothing inconsistent with using a wheelchair and being able to fix walls. The non-disabled public have a sadly simplistic idea of what it is to be disabled. The reality is that the vast majority of wheelchair users can walk to some degree, the vast majority of ‘blind’ people have some vision, and so on. I frequently see people demonised in the press for doing things that I can do, but the truth is that disability is variable and that doing them likely has a cost, and the press never tell you about that. 

    Disabled people doing their own gardening is something that comes up frequently in accusations. Let’s look at that from my situation – I have two serious spinal injuries, disabling amounts of pain and I walk with crutches, yet I can mow the lawn. Nothing inconsistent there, the lawnmower makes a reasonable walker, you can’t see past my trousers to tell I’ve had to strap a knee-immobilizer on one leg and a knee brace on the other to stay on my feet long enough to do it and unless you want to sit watching anything up to half a day you aren’t going to realise that it takes me four or more attempts with significant breaks in between to manage it. You can see flowers in my flower beds, yet you won’t have seen me crawling from spot to spot to plant them, because it’s far more practical and less painful than getting up and walking to the next plant. And what you absolutely won’t have seen, even if you’ve got me under 24/7 surveillance, is that I’m doing that work on what may well be the only day in a month I’m well enough to do it.

    You say throw the book at them, and fraud shouldn’t go unpunished, but the truth is that disabled people are being harrassed and attacked day in, day out by people who believe they’re perfectly entitled to make that attack, and that a disabled person who uses a wheelchair one day, but not the next, or whatever, is clearly a fraud. Disabled people are living in fear because of the public’s belief that benefit fraud is rife, and their complete inability to understand the complexity and reality of disability.

    The reality for disabled people is the reverse and worse, of Blackstone’s formulation, with the public believing it is better that 10,000 innocent disabled people are punished than that one guilty person goes free. And isn’t that something we need to change?

  • http://twitter.com/LonAitewalker R Skye

    In a response to Gadfly and to anyone else who thinks there’s enough “scroungers” to warrant this sort of action – and also have their own ideas of what “scrounger” means, I will add:

    Disabled people who are actually having a
    life are not “scrounging” – if they are on DLA they are actually
    entitled to be on it. DLA is not a disability benefit – it is to allow
    people who are disabled to ref, to fix walls even in a chair, and so
    on.  Being disabled does not and should not mean we have to stay inside
    and eat gruel…but it’s attitudes of people who feel that we SHOULD be
    in order to be considered having a disability that has to change.

    I have a condition which is so painful I find walking 100 yards a
    challenge, yet I garden with my son.  I have had this used as evidence
    against my disability…the truth of the matter is my mental and
    physical health would undoubtedly be worse if I didn’t do these things. 
    The “scroungers” who get reported for going to the gym (no one
    considers this may have even been considered physiotherapy), the ref on
    weekends (after all, a weekend match is how many hours?  You can work
    less than 16 hours a week and still qualify for benefits).  The fraud
    rate on benefits is .5%, and that is the figures directly from the DWP
    themselves.  The appeal rate for people who get removed erroneously from
    benefits and then get them reinstated is somewhere in the region of
    47%.  It would probably be higher if many disabled people weren’t so
    terrified – or in some cases died before they ever got to the tribunal
    which may often not happen till a year later.

    There are always going to be scroungers because they know how to play
    the system and can get away with it – the genuinely disabled however
    shouldn’t be targetted for the hate in an attempt to justify an
    extortionate amount of cuts.  The current plans by the government is to
    cut 20% of all people claiming DLA.  I’ll say that again…20%.  If only
    .5% of claims are fraudulent, then we are looking at 19.5% LEGITIMATE
    CLAIMANTS who are about to lose their benefits.

    Hence the fear…and hence why we need help.

  • Lesley F.

    slowly, very slowly some people are starting to sit up and take notice of this awful demonisation. I listen to radio 4 a lot and respect it for most of what it does but it almost completely ignores what is going on regarding disabled people. I am currently undergoing the change from I.B. to ESA and I am terrified. This is not because I am ‘faking it’ but because I know I couldn’t deal with the stress of paid work or the physical reality of doing it. I have long standing Mental Health problems and an invisible disability caused by being born with faulty collagen-tiring and painful. I don’t believe the present assessment system is able to fairly assess these types of things. Also I frequently feel very alone because the current demonisation by the media and politicians means that not only do I have to struggle with the effects of my conditions (and deal with lack of understanding because of their invisible nature) but also even people who a short time ago would have listened sypathetically when I needed to offload a bit have now markedly hardened their attitudes and respond with gubbings they have read or heard about scroungers and fakers.

    Please 38degrees members help us out a bit here. I know you to be indelligent, independently minded people. I sometimes think of an adaptation of a famous quote ‘first they came for the disabled but I did nothing because I was not disabled’ and also ‘all that is needed for evil to flourish is for good men to do nothing’. Disabled people are in real danger and distress at the moment. Please listen.

  • David Gillon

    Unfortunately the first line of the blog is missing, that should read simply:

    “Disabled Benefit Recipient”

    making the meaning of “What word just popped into your head?” far clearer, though it sort of works with the title as is.

    Still I hope you’ll read it and take it’s message to heart, and if you have any thoughts or questions, please feel free to ask, I’ll try my best to answer them.

  • David Gillon

    I should point out that the blog was written over a week ago, so it doesn’t account for any additional effects of the budget, nor for the announcement today that the government are backing off from the removal of DLA Mobility Allowance from Care Home Residents, however as the wonderful Sue Marsh points out here http://diaryofabenefitscrounger.blogspot.com/2011/11/triumph-of-sorts.html the intention may have been to drop it all along.

    And while you’re at Sue’s site, read her simply stunning post for today, which, more than anything I’ve written above, shows the reality the press don’t tell you about, the reality you can’t see no matter how hard you stare: http://diaryofabenefitscrounger.blogspot.com/2011/12/so-how-am-i.html

  • Hullbill

    I’ve got to agree with david’s reply below. Thing often aren’t what they seem. I’ve got haemophilia, a very variable condition, and i live alone. I often have to do things that I shouldn’t do and that would make my doctor go white with horror simply because there’s no one else there to do it for me. Also, far from being lazy good-for nothings, disabled people are often gung-ho Can-Do people who think ‘bugger this for a lark, I’m going to have a go’. I took a pair of shoes to a cobblers yesterday, because of that I can’t walk today.

  • Karen Evans

    The people who bully, and verbally abuse disabled people are the lowest of the low.None of us know what the future holds for any of us. I am reminded of my late mother`s saying. ” God does not sleep”

  • Johnheadon

    I agree that 38 Degrees should take up these issues and campaign strongly. I also apologise for not putting forward this view more strongly in the past – I am not really surprised by the things David Gillon tells us, but that should not stop us being more supportive.

  • http://twitter.com/lisybabe Lisa Egan

    Yes, scroungers do exist. It’s impossible to run a completely fraud-free benefits system.

    0.5% of DLA claimants are scroungers. The government is cutting 20% from the DLA budget. That means that 1 in 5 genuine claimants will lose the money they need to live.

    The fraud rate for Incapacity Benefit is even less; 0.3%. A far cry from the falsified 94% you’ll read in the Daily Mail.

  • http://twitter.com/lisybabe Lisa Egan

    So 38 Degrees finally does something: Publishes a (very well written! Nice one David!) blog post.

    You’ve been begged by disabled people for help for nearly a year. One blog post is too little, too late. The Welfare Reform Bill is only one Lords reading short of Royal Assent.

    I shall be waiting for my inbox to fill with Emails from you about how you’re going to pile on the pressure to halt the bill. I won’t hold my breath: I’m assuming this one blog post is the beginning and end of your willingness to “campaign” (after all, we disabled people are not as trendy as trees, right?) so breath holding would almost certainly signal my demise.

    (Yes, I am on your mailing list. See I care about the other issues you campaign about even if you don’t care about issues affecting people like me.)

  • David Gillon

    What many people don’t realise is that the original of Pastor Martin Niemoller’s famous poem/prayer actually was:

    “First they came for the Socialists,
    And I did not care because I was not a Socialist
    Then they came for the disabled, the so-called incurables…”

    Disabled people have to fight so hard to be heard we’ve even been erased from the most famous invocation against discrimination and persecution of them all, one that is part of a history that saw disabled people the first victims of the Holocaust, the Aktion T4 programme kicking off a whole year ahead of the other systematized slaughter.

  • http://godlessfaith.blogspot.com/ Sam Barnett-Cormack

    To be technical, as amendments have been made and are being made in the Lords (even just government ones), it has to go back to the Commons for them to consider these and okay them, or re-amend and send back to the Lords, etc etc. This is purely a formality, though, unless any amendments slip in that the government won’t accept. It often gets done in one day, sometimes even if it has to bounce back and forth a bit.

    If, however, there are amendments the government don’t like, it can take rather a lot longer, especially if the schedule is quite full.

    However, most of what I said can be largely disregarded. There is still some hope of amendments at report, especially if peers can be lobbied effectively – cross benchers, opposition peers, government peers who are prone to rebel, or who have a particular interest in our cause. Of course, if there were time for 38 Degrees to mobilise on the issue, that could be a great help, but there’s only a week and a half until report starts. Substantive amendments at report are far more likely than defeating it at third reading. The opposition have been too supportive of a lot of the contents.

  • http://godlessfaith.blogspot.com/ Sam Barnett-Cormack

    I find it fascinating that you decry the fact that people believe what the press tells them, and then spout exactly the line that indicates what David described as brainwashing. There are a few cheats, often very canny – so canny, and unscrupulous, that there is little that can be done to stop them apart from close surveillance 24/7 of every claimant, which would cost more than it would save and, because of the kind of misunderstandings we’re trying to tell people about, it would damage more innocent, vulnerable people than it would ‘scroungers’.

    The levels of fraud are tiny. That is the simple fact of the matter that the government and media keep trying to obscure, but the official figures bear them out.

  • http://godlessfaith.blogspot.com/ Sam Barnett-Cormack

    Funny, the rules of Housing Benefit are that it’s only ever paid to help cover rent. There’s a separate thing for home-owners, but that only ever covers mortgage interest. It’s technically impossible, AIUI, to gain any equity in a property by virtue of government housing cost support.

  • http://twitter.com/lisybabe Lisa Egan

    Forgot to include: There’s a rumour going around that 
    “ David’s main criticisms is that in a system where the most popular campaign suggestions get prioritised, it can be difficult for marginalised voices such as disabled people to be heard.”  isn’t strictly true.

    George Potter further down the thread, and Sue Marsh on her blog have both claimed that disability issues *have* come out as the most popular choice in your “what shall we focus on next?” polls. If that’s true then it’s not the case that your “democratic” system is failing minorities, it means that actually your members are in favour of you supporting us but there’s a top down attitude of not caring about the 3.2 million people in the country who claim DLA.

  • David Gillon

    And it’s the fact that we’re now here, at this point in the bill, where it’s all but too late to stop it, when we’ve been pleading for help all year, that has caused much of the very real anger and frustration with 38 Degrees (and other mainstream groups to a lesser degree) for the disability lobby. The challenge to 38 Degrees is to find a way to make a real and substantive contribution to our struggle, in too many cases a literal struggle for survival, when the best opportunity has probably been needlessly sacrificed.

  • http://www.facebook.com/davidbabbs DAvid Babbs

    The claim made by George Potter below is simply not true.

    Campaigning about the DLA was indeed a popular suggestion on the uservoice area of the website.

    As we explain on the uservoice area of the website, if something is popular there then it goes to a poll of the wider 38 Degrees membership. Here is what we say on the uservoice area of the website:

    “- Please note that an idea being popular on this part of the website does not guarantee that it will become a 38 Degrees campaign. This is because firstly this area of the site is not visted by all 38 Degrees members and secondly because it is possible for non-members to vote. This can potentially skew the results. If in a member survey the wider 38 Degrees membership says other issues are more important, those issues will take priority.” you can read the full wording here: http://38degrees.uservoice.com/forums/78585-campaign-suggestions

    Subsequently, on the basis of the popularity of the DLA suggestion on the uservoice area of the website, 38 Degrees polled the wider membership about the campaign suggestion. A number of times. You can see details of wider membership polls here: http://blog.38degrees.org.uk/tag/future-campaigns/

    I’m not saying our system is perfect. I hope this blog post kicks off a discussion about how it can be improved. But I can assure you there is no “top-down attitude of not caring”. 38 Degrees works because 38 Degrees members set the priorities.

  • http://twitter.com/lisybabe Lisa Egan

    That you for taking the time to clarify that.

  • http://www.facebook.com/davidbabbs DAvid Babbs

    I’m sorry if you didn’t get a reply, we do try to reply to everything but things were pretty chaotic around the time of the forests campaign so it is possible we may have let that slip.

    We did include the DLA in the “what should we do next?” poll immediately after the forests victory. You can see the results of that poll here: http://blog.38degrees.org.uk/2011/03/10/results-what-we-decided-to-focus-on-next/

  • Rose

    I fully support everything that David Gillon has said in his post.  However the cynic in me thinks 38 degrees will just sideline this and not give it the support it deserves.  As was stated disability is not popular particularly in the present climate when the Governmen is stepping up its propaganda.

    Please everyone support Pat’s campaign http://carerwatch.com/reform/

    and vote here http://epetitions.direct.gov.uk/petitions/20968

    I had always believed that campaigns in the past which wrought the greatest social change for the better were those that supported the less able, the underdog, those that had no voice.  But 38 degrees has turned that on its head and gone for the populist idea of the most votes it must be a winner.  Why not include a campaign which is judged not on how many members vote for it but one in which whoever runs 38 degrees thinks is deserving of support and if it gets the backing of say 10 percent of its members rather than the whole, 38 degrees supports it. 

    The disabled community badly need a champion – will 38 degrees take up the baton and go down in history like William Wilberforce, Emily Pankhurst, Joseph Rowntree or Lord Shaftesbury. Or are they only an organisation that pays lipservice to campaigning and prefers to go down in history as the x-factor of the campaigning world.

  • http://www.facebook.com/davidbabbs DAvid Babbs

    Sorry about this David – fixed now. Not sure how that happened. I think itstill made sense anyway thanks to the title – in any case it made no sense a lot of people to make interesting comments about it which I am enjoying reading…

  • http://www.facebook.com/davidbabbs DAvid Babbs

    Thank you for all these comments, and David for a great blog post. I think this passage in particular poses a really powerful question about the 38 Degrees model of choosing campaigns:

    “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.”One of the issues for 38 Degrees in addressing this challenge is that members don’t just choose the campaigns, they also *do* all the campaigning.  There really is very little to 38 Degrees apart from the members, just a tiny little office in London with a handful of staff in it. So if as a staff team we prioritise campaigns that the members haven’t voted to prioritise, it’s quite likely that the campaign will fail because not enough people would choose to get involved.

    So I guess a key part of how 38 Degrees could support marginalised groups has to involve giving you the opportunity to make the case for why the campaign should be prioritised directly to our members. This blog post was an early attempt at that. How else do you think we could do it? For example I’ve wondered about including more links to “further information” on the voting pages themselves?

    Has anyone seen any good examples of this being done better by another organisation elsewhere?

  • http://www.facebook.com/davidbabbs DAvid Babbs

    I understand your point Rose, and I guess as executive director I would be the person who’d get to choose campaigns if your suggested system was how we worked. But the dilemma is that the very reason that 38 Degrees campaigns have influence is because they are genuinely driven by our members. If we picked campaigns in the office in the more traditional NGO way we wouldn’t have so many members and we wouldn’t be able to make a difference on any issue.

    So for me the question is, is there a way of reconciling our member driven way of choosing campaigns (which is really core to our ethos and our success) with standing up for marginalised and oppressed groups (which I personally would really like 38 Degrees to be able to do)? I definitely think there is a tension here. I’d like the answer to not be that we’re just the wrong organisation, but I don’t think the answer is for us to start reducing our members say in what we campaign about.

    What do you think? does that make any sense?

  • http://twitter.com/lisaansell Lisa Ansell

    Ultimately this year one of problems has been assumption that ‘the left’ fight this. Netroots which 38 degrees was part of, was in fact an astroturfing exercise so Labour could appropriate opposition to the cuts. Welfare issues had to be washed from debate, because Labour supported them. Our mainstream media not interested in things outside political debate, and with neo liberalism at heart of anti-cuts movement a ghetto of so called internet activists have continually framed the fight for basic equality and democratic representation as one special interest group competing against another.Internet activists generally from a small social group, inextricably linked with mainstream politicos. Who is hardest hit- the 13 year old whose social worker cant do anything for her, or the disabled person punished for existing, the mother who cant work any more and is punished for being as slut by our political parties? We couldn’t address inequality as fighting the cuts meant squabbling with each other to get the attention of a male led, middle class led, labour centred, left. The criticisms of 38 degrees that have been made, are absolutely warranted and while this blog post is excellent it doesn’t make those criticisms go away. Cherry picking occasional policies which seem winnable left the millions of people hurt this year out in the cold and ignored. 38 degrees were very much part of that.. Oh that people hurt this year could have been forests or libraries. Ultimately the people paying the price this year were uninteresting to a ‘left’ who are largely the same demographic as ‘the right’- although that ‘left’ demanded their right to be seen as fighting for us, and marginalised us in the process.

  • http://twitter.com/lisaansell Lisa Ansell

    ”Remember, slaves didn’t have the vote, no vote told Wilberforce and 

    the abolitionists that they needed to campaign for what was right” And this is offensive. The criticisms arenot that ‘we’ should remember, but that 38 degrees need to take on board real effect of their actions this year.

  • http://twitter.com/LonAitewalker R Skye

    With all due respect, we did that.  The “Stop the Cuts to Disabled” campaign was in second place nine months ago.  It WAS voted in as a priority.  Then…it was gone and we were told 38 Degress would “look into it”.  Meanwhile the bills were passed…and instead the idea of “saving trees” got popular, no matter how many times we tweeted it and tried to get it happening. 

    Want to know what could be done? It seems to me a “Let’s do this before disabled people die in droves because we botched up previously” would do a CONSIDERABLE amount…but that isn’t being offered and I sincerely don’t understand why.

  • David Gillon

    I’ll expand on Lisa’s point (and should probably make it clear we know each other – Lisa is the founder of Where’s The Benefit where I’m a regular blogger – and I was aware of her frustration with 38 Degrees, but my decision to blog about my own issues with 38 Degrees was made independently)

    The difficulty, perhaps I should say impossibility, of winning a ‘beauty contest’ model of campaign prioritisation for a demonized and disenfranchised minority _is_ a very real concern of mine. 

    However it is far from my only concern:

    I don’t believe that disabled people have been served at all well by 38 Degrees, the fact that all disability matters were left off the last ballot – forgotten, no matter the extenuating circumstances, points to disability issues clearly not drawing anything like sufficient attention or priority. Equally I feel that once that mistake was realised the ballot should have been withdrawn and re-run – as I said to David Babbs: what would happen in an election where a candidate’s name was left off the ballot paper? If the democratic model is so fundamental to 38 Degrees, then I just can’t understand this decision.

    Similarly I believe opposing the Welfare Reform Bill should have been a no-brainer for 38 Degrees. Not only is it squarely within their campaigning territory, with those with the least ability to defend themselves being victimized by a combination of uncaring government and big business, but it offered obvious synergies with their campaign against the NHS bill. The two bills have proceeded through parliament in near lock-step, disability and healthcare are closely linked in the public mind and they each present clear opportunities for manipulating media coverage to support both campaigns at once. Not supporting the disability movement in our opposition to the WRB didn’t just cripple our campaign, it weakened the one 38 Degrees did back.

    And then there’s the press. 38 Degrees have been running a major campaign on press responsibility, at the same time the press have been engaged in a systematic demonization of disabled people and the PCC’s attitude is ‘discriminating against a minority is fine under the Press Code’. The opportunity to tear press ‘morality’ to shreds is all too apparent.

    And last the voting farrago on UserVoice, with thousands of votes for action against WRB ‘lost’ and no action taken for 8 months even though promises were made, just speaks volumes about the importance that was attached to disability issues. I believe David Babbs when he tells me it was cock-up, not conspiracy, but the way you cock things up reveals a lot about the way an organisation prioritizes issues, and this seems to tell us that disabled people didn’t rate very highly at all, not even when the votes concerned would have seen us dominating the UserVoice voting. Again this seems irreconcilable with the democratic model that is supposed to be the core of 38 Degrees organisational values.

    I talked about ‘brain-washing’ in my blog, I think we’re seeing the unconscious effects of that in the prioritization of disability issues we’ve seen over the last year. And the result of that is that disabled people have started to turn their backs on 38 Degrees, convinced it doesn’t care for our issues, that ultimately it isn’t any different to all the other groups who think we’re all lazy fraudsters. I hope 38 Degrees is better than that, I think it should be better than that, I know it needs to be better than that. But for disabled people, the jury is still out, and talking isn’t going to fix it, only action will.

  • http://twitter.com/LonAitewalker R Skye

    Yeah I saw that and just…blinked a few times.  I cannot fight my response: 

    “Remember, helping slaves and being a Suffragette was against the law.  In other words, activitism isn’t about doing what is trendy or popular, but what is right.”

  • David Gillon

    Lisa, I’m sorry if you (or anyone else) were offended by that, but I believe it’s a valid analogy to our situation. The lessons of history suggest that demonized, victimized minorities are eventually vindicated, with those who didn’t support their struggles reduced to the margins of history and the perplexed consideration of those who look back and can’t understand how anyone could not have supported them. And as you say, 38 Degrees has had a year to take action.

  • Rose

    I understand that the members drive 38 degrees but ultimately someone has to take the decision to pick a campaign or decide which ones the members should vote upon.  The last time I voted on 38 degrees I don’t remember them picking out disabilities as an issue that could be voted on, I seem to remember the NHS was there but not disabilities. A very cleverly worded campaign could have ensured the cuts to the NHS was included with that about saving disabilities and would have surely garnered everyone’s support.

    I also in the past voted for disabilites when 38 degrees accidently wiped out all the votes.  I don’t understand why they could not have just restarted it by putting the total of number of votes counted before it was lost into the soft ware and carrying on from their.  I beleive 38 degrees lost a lot of support and credibility when that happend, its hard to see how they will ever regain the trust of the disabled community.

    I believe many people will support a campaign if it is presented to them in a persuasive way.  And due to the propaganda by the Government I know it will have to be very persuasive.  I am not stating the some one has to write a novel like Uncle Tom’s Cabin or a film like Cathy Come Home but surely a few well written persuasive blogs like David Gillons could be promoted by 38 degrees as a precursor to a campaign.

  • David Gillon

    “One of the issues for 38 Degrees in addressing this challenge is that members don’t just choose the campaigns, they also *do* all the campaigning. There really is very little to 38 Degrees apart from the members, just a tiny little office in London with a handful of staff in it. So if as a staff team we prioritise campaigns that the members haven’t voted to prioritise, it’s quite likely that the campaign will fail because not enough people would choose to get involved.”

    I think this is a self-fulfilling prophecy, people can’t vote to take action against something they aren’t aware of. Worse, with a vindictive, overwhelmingly right-wing press and a manipulative amoral government (not that their predecessors were any better) they may have been convinced that the issue in question is not worthy of support and is in fact the refuge of charlatans, scoundrels, fakes and fraudsters, and that may mean it takes more than simply publicising the issue to draw support. If you look down through the posts here you’ll see several where I’ve had to explain that a disabled person doing X does not mean they are a fake, that X is in fact completely consistent with being disabled; the brainwashing and limited understanding of disability tells even on those who presume they are liberal and would be horrified to think their reactions have been shaped in this way. But if no one tells them, no one helps them to understand….

    Equally the groups who are being hardest hit by inequality may find themselves the least able to access the 38 Degrees model. Like it or not, we are dependent on the media to alert people as to the issues, and even when it isn’t being selective and biased and hate-ridden the media prefers issues to be cute, cuddly and simplistic.

    All this adds up to a very real problem for 38 Degrees, does its commitment to doing what its supporters vote for inevitably lead it into conflict with its commitment to doing what is right. Are those who need its help most denied its help by the structure that is supposed to empower them? 

  • http://twitter.com/snozboz Martin Burch

    I have a suggestion to improve the 38 degrees system, and hopefully tackle this tyranny of the majority.  

    Campaigns on UserVoice that don’t get enough votes to be considered, or that are considered by all members in a poll but don’t get enough votes to be followed up, should be given the opportunity to advocate for their campaign on the main 38 degrees website, Facebook, twitter, email network, and all other forums.  

    38 degrees should show the leadership needed to say “these so-called minority campaigns are important too, and you probably don’t understand them properly because of how they are presented in the wider media – so we’re going to give their advocates the tools to persuade you”.  Then they should be added to the next members poll, but with a lower threshold for being accepted as a 38 degrees campaign.

    BTW, please would 38 degrees run a snap poll NOW, referencing this blog post, with a Yes/No question about whether to support “Pat’s campaign e-petition” as an urgent 38 degrees campaign.  Give David all the 38 degrees tools to persuade other members to get involved.

  • Susieb1211

    I write as the lone parent of a disabled lad of 18.  Desparate re the future is how I feel :0(  That aside I do think that 38 Degrees have a genuine problem with campaigns that are not greatly supported as all money is raised for each campaign individually.  Ads in papers etc cost a fortune.  Hiring leagal advice costs a fortune.  But how about an “education” campaign aimed at current 38 Degree supporters re disability issues?  Sending out mass emails should be quite cheap?  I became the parent of a severely disabled child when I was 36 years old.  My life changed beyond measure.  Disability and illness can and does affect people out of the blue.  Many not affected at the moment probably assume that all the safety nets are still there for them.  They arent.  Maybe we get a discussion going first with 38 degree members and then hope to build on this to a consensus for action?

  • MC

    I had no idea there was this level of contention within 38 degrees about the issue of disabled cuts. I have a vested interest in this, and i shall be watching this very carefully.

  • Alan_bond

                      This is typical of tory propaganda – they thrive on effects like this. Demonising people who are disabled is just one of their dirty tricks. My wife is disabled but she worked and paid tax and NHI while bringing up four kids after her first hsuband walked out on her. She now has difficulty in walking and is suffering from macular degeneration. Still the tories label her a workshy scrounger in the same way they label pensioners who worked in low paid jobs scroungers because the couldn’t afford to pay into a pension scheme even if their employers offered them one.
                     Many will have seen a TV programme called ‘Saints & Scroungers’ fronted by Dominic Littlewood on the BBC where he publicises benefit cheats. In a recent programme there was a story about a woman who fraudulently obtained £55,000 in benefits. It was later revealed that this amount was taken over a ten year period. So, £5,500 per year,  little enough for someone who is genuinely in need. There are two things that spring to mind here and the first is that the amount of unclaimed benefits each year far exceeds the amount fiddled by these crooks. The second is the amount fiddled by tax dodgers, mostly filthy rich or multi-national corporations,  which amounts to £70 billion per year or £1.33 billion pounds a week. Wouldn’t it be nice if just once the TV people started an investigation into this criminality instead of indirectly attacking the weakest and most vulnerable in our society. Also bear in mind that these tax dodgers are complaining about the 50 pence tax rate and Cameron is listening to them rather than to us. The cuts in public spending and increases in VAT are the way to him cutting this top rate of tax for his cronies. Not so many years ago a Labour politician, whose name I can’t recall, labelled the tories as vermin – I have to say I agree with him.

  • Anonymous

    I am a full-time carer for my son.  Too many are not realising how truly awful it is to be disabled at the moment.  Attitudes of the general public, fuelled by the media, are horrific.  We expect to receive verbal abuse every time we leave home and have been attacked with spray cans (hit about the head and sprayed, and on another occasion knocked to the ground, spat on and vomited over).  We are frightened, it is an act of bravery every time we leave home. 

    Much of the verbal abuse centres around us claiming benefit.  It is always assumed that we are claiming benefit though this is not necessarily the case.  I really resent the negative attitudes towards myself claiming benefit.  Carers Allowance is just over £50 per week, had my son received residential care it would have cost the tax payer £3,000+ per week.  Tax payers should say thank you to full-time carers we are saving the tax payer a huge amount of money.  It should also be remembered that most carers worked until they became full-time carers.  I worked for 17 years before my son was born. Also far too few understand how tough the job of carer is.  I care for my son 24/7.  No one has ever given me a break at night.  Disabilities don’t magically disappear at night.  It is physically exhausting and emotionally draining.  I, like many thousands of other carers have developed serious health problems.  I don’t get a livable wage/benefit and certainly don’t get compensation for the destruction of my health and loss of quality of life.  Being attacked in the street, on buses, in shops, is a nightmare and pretty much the last straw.  A bunch of hyenas would be more caring than the majority of people in British society today.  My poor son what will become of him when I am dead? 

    The media including the BBC needs to be forced to return to good quality journalism well informed, balanced, based on facts and not outrageous distortions of the truth.  Everyone should remember that people with disabilities are YOU after a car crash, stroke, firework explodes in your face, etc.  Ask yourself how do you want to be thought of and treated when you are living without your arms or legs, unable to control your movements, blind or deaf?   

  • Anonymous

    It makes me wonder who, exactly, 38 degrees are working for. I have donated to them in the past but now i think i’ll keep my cash. As a disabled person, charity obviously has to begin at home and a tenner here and there will mean more to me than it does to them..

  • LucyN

    Just been reading this long thread and have noticed that correspondents seem to be hoping that 38 degrees is a campaigning organisation in the mould of say, Greenpeace or Save the Children but with many more campaigns on the simmer.

    Surely, it isn’t – it can’t be. It just provides a way of conducting  a number of disparate short-ish campaigns when an opportunity arrives for those of us signed up to it – that’s it. It can’t sustain a campaign in the way of major social charities or pressure groups can (see below).

    Everyday the government comes out with yet another way to undermine the social contract – and any campaigning organisation (big or small) will be feeling overwhelmed by the increasing attacks on the fragile fabric of our society. But participating 38 degree emailers do what we can, when we can, for maximum effect. And I will carry on donating to it when funds allow because I am really impressed by the simplicity of the set-up. Mainly it simply saves me a little bit of time finding out what bills are in the offing, or being debated and reminding me to contact my MP.  That’s it.

    For a sustained campaign I would put my lot in  with the many other campaigning organisations around (and the trade unions, or organisations such as Labour Start). Many of these have the expertise on hand that 38 degree members don’t, and also have begun to set-up the kind of petitioning element that really is the heart and soul of 38 degrees.

  • http://twitter.com/lisybabe Lisa Egan

    It does make you ponder the futility of trying to stop these cuts when we can’t even convince a campaigning organisation to campaign. We might as well just give up.

  • David Gillon

    Just to emphasise the problems the cuts mean for disabled people, a new Demos report documents the shocking set of failures in support experienced over the last six months by just the six disabled people http://www.demos.co.uk/files/DestinationUnknownAutumn2011_-_web.pdf?1322826138 And there’s far worse to come

  • Rose

    I think many disabled people are becoming demoralized by the constant harressment from the ESA and DLA tests and Government and media propaganda.  So many people say if you are genuine you have nothing to fear, it is just the sherkers and scoungers that the Government is going after.  That is part of the problem, the Government are going after the whole of the disabled community as they have set targets as to the percentage of people they want to stop receiving sickness and other related benefits.  Not because these people are no longer sick but because the Government is intent not only in saving money but I believe the main motive is to introduce private insurance by the back door.  I won’t go into it here because it is another horrifying story which is a real conspriacy to which many in the disability community are graducally waking up to.  It is very difficult though to communicate to people what is happening as people have preconceived conceptions and just don’t believe it could and is happening in the UK.

    We need a champion – Pat has put herself forward but she needs support.  Their are going to be a lot of tragedies which will be unfolding due to the cuts on welfare benefits.  It is not just ten or 20 percent reduction in income many people face up to 50% or more cuts as they loose their DLA and get pushed on to JSA.  JSA is very poorly paid benefit which was never meant to sustain someone long term it was supposed to be a stepping stone until a person was back in work.  However many in the disabled community are not well/fit enough to work even if they can find a job.  It is no good saying look at Stephen Hawkins and saying he works, every person is different and has different capabilities and different opportunities.  It is not the cost of welfare that is costing the country a lot of money that could easily cover the costs if they chased after people who are involved in tax avoidance.  The banks and the financers have cost the country money and they are the ones who are not being hit by the cuts.

    As to what 38 degrees can do about it I think they need to review how they organise campaigns, in order to make if fairer to minorities.

  • Damp Squib

    Since reading David’s guest piece I have sat all night on my sofa in my comfortable world and cannot get it out of my head. If there was ever a modern day John the Baptist then David is the one. We, the 38 Degrees Zombies,MUST give this our priority as there are lives at stake. It is an issue like slavery as David says – it goes further than just seeing if it comes out first passed the post in any democratic voting system. It is only tonight after reading David’s piece that it has actually dawned on me that this has got to be a 38 degrees issue no matter what! 
    We must get as many signatures on Pat Onion’ s E-petition http://epetitions.direct.gov.uk/petitions/20968 as there were on the 38 Degrees Save the NHS campaign. There are only just over 6,000 at the moment so all 38 Degrees members MUST sign this if nothing else! It needs 100,000 so we could do that no problem in a few days. Then get 100,000 on the 38 Degrees petition as well! The Demos report that David refers to says it all. Edmund Burke said all that is necessary for the triumph of evil is that good men do nothing. Us 38 Degree-ers are Good Zombies and I beg us to take this one on and also to get those signatures on Pat’s petition. This Welfare Reform is utterly, utterly wrong and we don’t have much time with this one. Let’s be true to the 38 Degree promise that 38 Degrees is the angle at which an avalanche happens. Let all the 38 Degrees members make the avalanche happen with this one for all our fellow citizens who are often too tired and too ill to keep up the pressure. We don’t need to vote on this one, friends. It is just the RIGHT THING TO DO for this group. xxx

  • Dave

    Please accept that I have full sympathy with the plight of the disabled. however I do not vote for any local i.e. national issues as I believe that the power of 38 degrees lies in its ability to influence really civilization destroying actions, CO2 emissions, etc. and the damage caused by multinational companies.
    If we could get the resources together I would support any action that could bring this government to its senses and recognise that it is employed to serve the whole population of the UK and not corporations and the already affluent.

  • David Gillon

    If your focus is opposing big business, are you aware that the hardening of attitudes towards benefit seekers within UK government was driven by the US insurance multinational Unum, and uses tools and concepts they developed to worm their way out of paying out on their disability insurance policies in the States? The existence of Unum’s ‘disability denial mills’ led to legal action by States Attorney-Generals across the US, who branded Unum ‘a rogue company’ and forced a massive class-action settlement. Unum are now peddling their snake oil here, whispering into government’s ear that if we can’t recover from disability in 6 months then clearly it’s because we’re lazy. And as the benefits cuts strike home, there are the Unum adverts on TV, telling you how terrifying disability is, that benefits won’t cover it and that you had better invest in their disability insurance (just hope you never have to claim on it). This has all been extensively documented, it’s just impossible to get the story out over a media that doesn’t care. Meanwhile the French multinational ATOS has the contract for Work Capability Assessments, with no penalty clauses to force them to correct the shoddy work that is costing the taxpayer £100m annually in appeals; while the new Fit Note proposals are likely to see ATOS and Group 4 Security bidding for the right to tell you that, no matter what your GP says, you aren’t sick enough not to work.

    If you want to expose the damage done by big business and the corruption that wraps around it, there is no better example than disability benefit policy.

  • Rose

    If that is the case why did 38 degrees support the campaign to save the NHS.  It was not a civilisation destroying action per se. 

    However just as the destruction of the NHS potentially threatens everyone in the UK so does the destruction of the welfare state and the destruction of sickness benefits and DLA. But for the Grace of God etc, if not for your self a family member or friend.

    As David says the biggest corrupt organisiation at work in the UK at the moment is UNUM who since the 1990′s have been working hand in glove behind the scenes with certain members of the Government and the DWP to destroy welfare in the UK in order to access a potentially lucretive market in selling private insurance to people in the UK.  This was also entwined with the privatisation of the NHS. 

    You surely don’t think the present information that they are peddling to Doctors who in turn have to peddle it to their ill patients that work is good for you, and the sooner you get back to work the better came from a reputable source did you?

    Just read through the following web site

    One further point you say you are concerned about the destruction of civilisation, but what is the point in allowing civilisation to continue if it made up of people who neglect their fellow man and are happy to see people suffer as long as they themselves are ok, and a tree or a library book takes precedence over more than a million of their fellow citizens.

  • http://thepotterblogger.blogspot.com/ George W. Potter

    David, two things:
    Firstly, the fact is that you lost a campaign suggestion and thousands of votes for it and, despite multiple promises to restore it, you have utterly failed to do so.Secondly, perhaps you would care to explain how it is that you have the resources for three separate campaigns dealing with trees, badgers and wildlife in general yet claimed you didn’t have the resources to run a campaign on disabled issues?

    Also, perhaps you’d care to reply to the points I raised over a month ago?http://www.thepotterblogger.blogspot.com/2011/11/reply-to-david-babb-of-38degrees.html

  • Anonymous

    Pats computer is adapted for someone with sightloss. Although it has enabled her to ‘listen’ to comments left here, she is unable to actually register to leave a comment of her own.
    If anyone would like to email her they can do so  c/o admin@carerwatch.com

    Damp Squib, Pat wants to send you an email. If you are willing can you send your contact details to the address above.

    Thanks everyone

  • http://www.latentexistence.me.uk/scary-future/ Scary future | A Latent Existence

    [...] from talking about problems with the 38Degrees process, David Gillon’s guest blog post “On being demonised” – a disabled 38 Degrees members’ perspective [38 Degrees] is a comprehensive summary of what government policy is doing to sick and disabled [...]

  • http://www.facebook.com/davidbabbs DAvid Babbs

    Hi Lisa, just to be clear, 38 Degrees is independent of all political parties and has nothing to do with “an astroturfing exercise so Labour could appropriate opposition”. We are accountable to, and funded by, our members who are everyday citizens from across the UK.

  • David Gillon

    A set of posts by disabled people over the weekend illustrate how grim things are becoming:
    My own post for International Day of Disabled People, ‘Vulnerable’: http://davidg-flatout.blogspot.com/2011/12/vulnerable.html
    Disability hatred at Birmingham Christmas Market: http://pseudo-living.blogspot.com/2011/12/birminghams-frankfurt-christmas-market.html
    it all adds up to a ‘Scary Future’: http://www.latentexistence.me.uk/scary-future/
    Looking at our inability to win support from either mainstream or the left from a feminist perspective, ‘You’re Frightening Me’ : http://www.thefword.org.uk/blog/2011/12/youre_frighteni
    What future is there for disabled people when benefit cuts will take their income below survival levels? ‘Not Ok’: http://wheresthebenefit.blogspot.com/2011/12/not-ok-triggerwarning.html

    A piece in the Observer by Ian Birell ‘The demonisation of the disabled is a chilling sign of the times’: http://www.guardian.co.uk/commentisfree/2011/dec/04/ian-birrell-prejudice-against-disabled (with quote from yours truly). 
    New research by BT shows ‘Two Thirds avoid disabled people’: http://www.btplc.com/news/articles/showarticle.cfm?articleid=%7Ba558f129-8f6c-410a-ab4b-703e976ad053%7D 

    And from earlier in the week, the sickening attitudes met by disabled Canadian blogger Dave Hingsburger during his visit to the UK, ‘The devaluation those with disabilities’:  http://blogs.canada.com/2011/11/22/the-devaluation-those-with-disabilities/

  • http://www.facebook.com/davidbabbs DAvid Babbs


    1. If a campaign suggestion on the uservoice page is popular this triggers a poll of the wider 38 Degrees membership. We have polled the wider 38 Degrees membership about the DLA on a number of occasions. Once again, here is a link to those polls:

    There were some big problems, part technical, part human error, with the way a couple of similar DLA suggestions were merged last March. Some of these it was actually impossible within the constraints of the software we are using for us to press “undo” on. But nothing did not happen as a result of those problems on uservoice back in March. We were upfront about the problems, have apologised for them, and have polled the wider membership on the DLA a number of times since.

    2. We have prioritised wildlife and environment related campaigns on various occasions because these are popular issues amongst our members, who set our campaigning agenda through polls, proposals on the uservoice area of our website, and discussions on our Facebook page, via twitter and on this blog. I know there are limitations to this model of choosing campaigns – which David Gillon does a great job of highlighting in this blog post. But I think we are pretty upfront about how the process works, and keen to hear suggestions as to how we can improve it.

    3. I am guessing you are referring to the smears produced by a Conservative MP regarding our NHS legal advice, which you cite enthusiastically? There is a comprehensive rebuttal to Stephen Phillips MP, prepared by our legal team, here:

    I’m relieved to say that not all your LibDem colleagues have been as enthusiastic about Stephen Phillips’s efforts as you are. Many figures from all parties have engaged constructively with the findings of the 38 Degrees legal advice. For example Shirley Williams moved amendments to reinstate the duty to provide, which you say in your blog post is such an irrelevant issue. See here for example: http://www.bbc.co.uk/news/uk-politics-15563602

  • David Gillon

    We’ve tried. Labour have almost identical policies to the Coalition, in fact the demonization of disabled people started under Labour. Kaliya Franklin (aka @Bendygirl:disqus  ) provided the single best soundbite of the Labour Conference when she challenged EdM on it, but despite reporters queueing up to interview her, it never made the news. The disability charities are hopelessly compromised by depending on the Work Programme (bonded slavery comes to 21st Century Britain) for the money to keep them in existence, but they’re doing their best through ‘The Hardest Hit’. The Hardest Hit managed to arrange the largest ever demonstration by disabled people in a march on parliament, next to no media coverage. We can’t win this campaign unless we can spread our message to the people in the street who would care if they knew, people like those who support 38 Degrees. 

    I know other activists have been working on trying to get groups like UK Uncut interested, it’s only at 38 Degrees that we’ve had even this amount of success. You talk about petitioning, that’s one of the things we’re asking for. Pat’s Petition is there in my article, in a month we’ve managed to get it to 6,000 signatures, 38 Degrees could have provided that, and many times more, with one email to its supporters. Is that really too much to hope for? Equally we’re desperate to get our message out, to try and get people to understand that the cuts will literally destroy lives, that the media demonization means that, almost uniquely, we’re a minority group whose campaign for equality is being driven backwards, with three decades of progress wiped out in an orgy of tabloid hatred. How much effort would it take just to spread that message, to tie the hatred against us into the campaign for media responsibility, and so on.
    The whole thrust of my article was about the impossibility of a demonized minority winning a popularity contest for support, about the necessity of people stepping beyond simplistic measures like popularity to do what is right, what needs to be done. I did at least have some hope that 38 Degrees members would be willing to listen, because it seems like no one else will.

  • Mandy Parsons

    I have been diagnosed with a disintergrated lowerLumbar Disc and the one next to it has also been diagnosed as going the same way< I have been advised to swim and exercise where possible, on £88 pounds a week to run my one bed bungalow and with no other help as it is contribution based I am at the end of my tether, I have worked since I was 14< i am 47 with grown twins who have never claimed JSA and who are 26. I am now awaiting reply to my second application for DLA< it is not about benefit< it is about ACCESS! I want to go back to work, but I live in a village where the buses run every hour and not after 6 or on a Sunday, I dont go out I am lonely and isolated and I was a Licensee for almost 20 years, I worked in Hotels and Restaurants and I worked very hard, I want to use my transferable skills and the trustworthy and reliable nature that I have< but I can not get forward without help, I need a car, I struggle daily with mobility and I have persistent and constant pain, I have been like this for years and I have worked through it until my GP advised I no longer worked in my profession after the results of an MRI scan…..sometimes I think my life is over and I really wish that someone would just help me in a constructive way, as for contribution based ESA, you are worse off than income related, I have to pay for maedication, dental treatment and I have no access to Community Care Grants because I have contribution based ESA, plus my bus fare whenever I go into to town is £4.50 return which means that I rarely make ends meet!

    Please Please help with this, I know that there are people who play the system but you cant argue with some medical reports and you cant grow back spinal discs….I only wish to God that we all could!    

  • Susieb1211

    remember housing benefit is under attack and this is being reduced by 20%.  Local authorities will have to decide how to charge each case when before all rent would have been paid.  Again this type of policy will hit those will serious illness and disability really hard :0(


  • Alex Greene

    I signed it already, but I’ll pass the word on.

  • Orbilia

    I got a letter from the DWP recently telling me that if the Welfare Rights Bill 2011 is ratified, then I will get no support from the state from April 2012 until I’ve eaten through the monies I’d saved for my retirement.

    My condition is degenerative so I won’t get any better.

    I have applied for over 1000 jobs in the 2 years, 7 months since I was made redundant. I’ve had four interviews in this time, two of which couldn’t even me bothered to inform me I didn’t get the job. A close second place resulted in the feedback that my previous employer had been under-utilising my skills and that I should be applying for jobs in the £40 to £45k mark. Not many of those jobs about in good times, let alone now. Applying for lesser jobs results in no interview due to being over-qualified!

    In short, I have a broken spine, qualifications, experience, dedication to job hunting (I’ve even applied for jobs the same day as having been in hospital with needles in my spine!), have studied throughout life, put money away for retirement, and whittled away my youth working like a dog only to find myself on the scrap heap at 47, treated like a dole bludging scum bag and left to rot. Well, thank-you very much Mr. Cameron.

  • Anonymous

    I know of one young woman with the incurable and debilitating disease Multiple Sclerosis who has been through 2 DWP / ATOS assessments in the past year.  Both times she was awarded NIL disability points, meaning that they assessed her as being completely 100% fit and healthy and able to hold down any full time job.  That was apparently on the basis that she was able to raise her arms above her head at the assessment.  She appealed both times and won her appeal both times.  First time after only 2 questions, the second time on the papers alone.  She has just received a letter from them saying that they want to assess her yet again – a third time.  Just what part of “incurable disease” do they not understand?  No wonder they have to employ over 80 additional judges to sit on the Appeals Tribunals when there are cretins in the DWP / ATOS making these ludicrous assessments, all in the name of “saving money”.  How much does it cost for an Appeal Tribunal to assimilate all the evidence and sit in a court room?

  • Eleanor Banwell

    You have my support. A brilliant article, thank you for bringing this to my attention.

  • http://www.facebook.com/john.hargrave1 John Hargrave

    Excellent article. Our own government is out to get us, no matter what!

  • Tom Hill

    Excellent article David and this ties in with an article in The Guardian over the weekend about the same issue.  As a non-disabled person I hadn’t realised the extent to which disabled people were being demonised which is revealed in your and The Guardian article.  I shall certainly vote for Pat’s petition about the Welfare Reform bill and do all I can to get a fairer deal for disabled people.

  • Ewormald

    At last you are listening to a disabled person I always ask for the welfare ‘reforms’ to be addressed by 38 Degrees but it is not ‘popular’ so we seemed to be ignored sorry David Babbs but that is how it feels wrongly or rightly. Because we are always ignored as that seems to be ‘the norm’ it feels that 38 Degrees are ignoring us too. I must say that 99% of people I have met down the shop etc,( I am retired and in a w/chair,) have been very nice, with only the odd ones being downright rude or offensive,actually I find that the young people are the most considerate. But I have had people shout at me and not having altered my personality by being in a w/chair, I shout back, that surprises them as they obviously expect us to just accept it. Its like becoming disabled gives you a brain transplant, and one is no longer human.  I am in an electreic chair and still threatened to bop some girl who criticised me for being disabled! The internet is my lifeline like so many disabled, but for me who have always been involved politically it is a way of still making my view count.The Robin Hood Tax and 38 Degrees where the first groups I joined on the net. 38 degrees giving me a voice thru petitions, gradually that has built up. As I am now w/chair bound it restricts me a lot because if my w/chair suddenly did not work I cannot just walk.  So a lot of government legislation bypasses me but what about the disabled people it affects how will they live   fulfilled lives, the govermant is paying out to poor famil;ies by taking our dla this cannot be right, people who have Cancer but are in remission, but this happened to my mum and after remissdion you go downhill fast, sometimes too fast to get any benefit you have to claim again. Disabled people who cannot walk far are now being told they have to work!
    People with MS cos they have’good’ days are being told to work, even if they sped 3 days oot of 7 in bed. what employer will put up with that?
    Shops are inaccesible and they won’t do anything in case the recession closes them.
    Disabled people are not considered at all and we should change this. It is not enough to bring them into the community peples mindaset needs to change too. Actually I had not realised how much disabled persons where disenfrachised until I was put in a wheelchair,I lived in Norfolk then and we went to Norwich but there are no drop kerbs and nowhere to push a w/chair that is not cobbled! Disabled paths are loose stones, impossible for a w/chair, disabled toilets are ok if yoyu can wak in, very often.  Or corridors are too narrow to turn a w/chair so one can’t access it.Then people get upset if you complain. Doors open the wrong wasalso in so called disabled facilities. The list goes on. How hard is it to ask someone w/chair bound to try and use it and to iron out mistakes. Women with pushchairs also have this problem.Rant over.

  • Ewormald

    People who need benefit help try and find a CAB open near you ask them to come out if need be and they should help you.

  • Jan

    I don’t imagine that many non-disabled people read right to the bottom of this excellent article. I am disabled and frustrated and angry and resigned to the fact that 38 degrees are highly unlikely to address Disability Issues. I would be better off if I were a tree! Hence my reluctance to contribute any more money until I feel represented too.

  • Rose

    Unfortunately many CAB’s are struggling to stay open due to the cuts.  Some also are short of the expertise needed to help people with their benefits.

  • David Gillon

    And disability benefits are a specialist area within benefits, with even rarer expertise. However much other people are screwed by the cuts, disabled people are screwed worse.

  • sjc598


  • Rose

    An appeal came round today asking for money to support 38 degrees.  However until the matter of helping people on disabilites is addressed I will no longer support 38 degrees fiancially.  38 degrees should take a leaf out of Peter Faceys article on http://www.unlockdemocracy.org.uk/blog/entry/e-petitions-dialogue-and-the-art-of-compromise 
    Particularly the section which states -
     <<Instead of a series of unedifying whipped votes, the Scottish Parliament's petitions committee selects petitions for debate, deliberates on them, receives evidence and makes recommendations on how each petition should be handled. There is no minimum threshold, meaning that a serious issue affecting only a handful of people has the potential to change things regardless of the number of signatures it receives.  The final recommendations frequently do not match the petitioners' exact demands but they are a usually genuine attempt to address their concerns. <<

  • Rose

    Sorry will try and post extract again -
    Instead of a series of unedifying whipped votes, the Scottish Parliament’s petitions committee selects petitions for debate, deliberates on them, receives evidence and makes recommendations on how each petition should be handled. There is no minimum threshold, meaning that a serious issue affecting only a handful of people has the potential to change things regardless of the number of signatures it receives.  The final recommendations frequently do not match the petitioners’ exact demands but they are a usually genuine attempt to address their concerns. 

  • David Gillon

    (Actually in reply to David Babbs’ message below – it seems the forum software has problems with extended discussions)

    38 Degrees may have included the DLA suggestions into the polls, but if people look at what’s popular on Uservoice to guide their voting (there’s no point in voting for something with no backing), then the overwhelming popularity of the DLA suggestions simply isn’t apparent. Instead of being a strong contender for top spot, the split proposals are only just in the top ten. Meanwhile the message ‘we’re looking into this’ has been sitting there for 8 months, with no follow up. That tells people disability isn’t a priority area for 38 Degrees, so disabled people are turning their backs on you in droves and ‘no support for disability campaigns’ becomes a self-fulfilling prophecy.You only have to look at the near absence of any additional support in the threads for the DLA measures in the 8 months since that message went up to understand that the cock-up and the unfulfilled promise to fix it have had a near fatal chilling effect on the popularity of campaigning against the Welfare Reform Bill. IDS must be laughing himself silly.

    You talk about the popularity of wildlife campaigns, and the role of uservoice and facebook in setting priorities, I’ve just finished pointing out how our efforts on Uservoice were gutted, while Martha Lane-Fox’s Race Online 2012 (http://raceonline2012.org/ and http://www.guardian.co.uk/housing-network/2011/dec/05/martha-lane-fox-social-housing-tenants-online) is busy pointing out that half of all people without internet access, 4.1 million people, live in social housing, so will be disproportionately affected by the housing benefit provisions of the Welfare Reform Bill, while more than 1 in 3 disabled adults, 4.25 million people, have never used the internet at all (see http://www.ons.gov.uk/ons/dcp171766_242415.pdf). Meanwhile those of us who can use the internet to campaign are frequently too sick to do it consistently. Rather than demonstrating the importance of democracy to 38 Degrees, you’re demonstrating that those who need your help most are selectively disenfranchised by the very mechanisms you extol. Effectively 38 Degrees is being demonstrated to be solely a tool of the chattering classes, with those in greatest social need not even allowed to be heard.

    As for your political jibe at George Potter, George was pretty much single-handedly responsible for getting the Liberal Democrat Conference to take a stand against the Time-Limiting of ESA and the horrors of ATOS assessments. He’s achieved far more for disabled people in opposing the Welfare Reform Bill’s attacks on us than 38 Degrees ever has.

    What’s clear from the messages to date is that the vast majority of non-disabled 38 Degrees members are completely unaware of what is happening to disabled people, or, worse, have bought into the propaganda that we’re all scroungers and fakes. They won’t vote for action against the Welfare Reform Bill because they’ve been brainwashed into believing it is there to help the tiny minority of us who aren’t fakes and scroungers. Meanwhile the disabled members have been crying out for help, but have been so resoundingly ignored that they’re turning away from 38 Degrees en masse as just another mainstream organisation that doesn’t care. The resounding message is that our disenfranchisement from 38 Degrees is both real and overwhelming. Can you really say disabled people’s anger isn’t justified?

    We can’t win your support with the system as it stands, and if the system doesn’t allow those who need you most to access that support, then isn’t that system betraying everything 38 Degrees stands for? Your latest email asks me to donate because ‘We’re driven by you’, not if we’re disabled you’re not….

    Show us you can make a difference, publicise Pat’s Petition with exactly the same prominence you gave to the NHS Petition. If you can email your members to take action over being called zombies, surely you can email your members asking them to take a stand against the Welfare Reform Bill and sign the petition? That doesn’t take much effort, but it could make a massive difference in getting our message out.

  • Susieb1211

    the difficulty as far as 38 Degrees goes is that 38 degrees do not have independent funding etc and are only as “strong” as the number of people prepared to fund and fight for each individual “cause”.  In fact in a way 38 degrees does not exist it just brings interested parties together to take action?  I think the way to go is through emailing 38 degree “members/supporters” and trying to spread the word re disability welfare issues etc.  As I have said else where most people simply dont know what is going on.  I shall continue to support issues such as the NHS and tax evasion etc.  These issues affect those with and without disabilities and serious illness. 

  • David Gillon

    Getting our message out to the mainstream campaigners  is part of what we’ve been asking for help with all year, and not getting anywhere.
      We can’t get the mainstream campaigning groups to enable us to do that, and we can’t do it without their help.

  • Als

    We needed your help with this, at the very least by raising awarness/sending out briefings to your supporters etc, back when we started asking for it, 38degrees.  I personally commented many times that people are DYING because of this, but you didn’t see that as important enough.  I just got another email from you listing your successes and asking for money; you will get nothing from me, because you have failed.  You have failed.  How many of the deaths that are now to come because of welfare reform could you have helped prevent?  Shame, shame, shame.

  • Alex Greene

    38 degrees has enough money and interest to save trees and circus animals, but not disabled people.

    What, are the disabled not middle class enough for you, or not cute enough to tug on the heartstrings of the bourgeoisie to make a worthy cause for them to join in?

    The disabled get the general public’s “B” game, and circus animals get their “A” game.

    Wait till it happens to them. Accident, disease – MS, MD, ME, motor neurone disease, or a slip, a fall, a crushed vertebra, macular degeneration, tinnitus, chronic RSI, diabetic neuropathy … it could creep up on them at any time.

    And watch as their ablist bourgeois friends evaporate around them, and cease to even acknowledge that they were even friends.

  • http://twitter.com/snozboz Martin Burch

    As you can see from my previous comment, I agree that these issues facing people who are disabled should have been and need to be taken up by 38 degrees.  However I don’t agree that it’s an “either/or” decision about what to campaign on – I’m proud to be part of 38 degrees because we choose together to campaign on several issues at any one time.

  • David Gillon

    I’m in an identical position, so are 400,000 more disabled people who even DWP admits are unfit for work. Come April we’ll have no household income whatsoever and be expected to sacrifice our pension fund and savings before becoming eligible for income related ESA. IDS and his minions claim that 12 months is enough to adapt to a disability, but the truth is very different. I’ve been disabled for 23 years, and those 23 years have seen a slow deterioration in my abilities. My consultants aren’t even looking for a cure any more, simply ways to allow me to manage my symptoms. How can IDS expect me to recover when even my consultants don’t? I’ve been pushing for investigation of some new symptoms for over two years, the best we’ve managed in that time is ‘something clearly isn’t right’, yet IDS thinks 12 months is enough to investigate, treat, rehabilitate and get the disabled person back into the (overwhelmingly anti-disability) workplace. Does he think the DWP fairies arrange this when we aren’t looking? 

  • Neil

    Thank you, David. An article like this for the benefit of 38 Degrees was desperately needed. I’m deaf and registered blind, so I’m facing exactly the same landscape of Government cuts and press demonisation that you are.

    On a more general note, I’m a 38 Degrees member, and a donor to boot. As a Scot, I’m unaffected by the Coalition Government’s plans for the NHS in England and Wales. I’ve still been supporting the 38 Degrees NHS campaign, though, because it was the right thing to do.

    One problem with democracy is that it only works well when everyone is well informed about the issues at hand. It follows that 38 Degrees needs to supply reasons why each potential campaign in one of their polls is worth having on the list. Just giving a bald list of options to vote for leaves people with the perfectly understandable reaction of “DLA? I don’t know about that. I’ll vote for the NHS, because I know that matters.”

    Another thing about democracy is that it works both ways. When minorities find themselves unable to get help from a given source, they vote with their feet and look for alternatives. I’ve already done that; I will not be making further donations to 38 Degrees until I see real support for disabled people, on a par with the NHS campaign. I’m not the only one who sees things that way, either.

  • Susieb1211

    Hi Neil I also think that there needs to be an info campaign to inform people re the issues.  Cant really expect people to vote for something they really dont understand.  What I have been wondering though is if simply those interested within 38 Degrees could collect money and run their own little campaign of newspaper ads etc?  One problem there of course is that most of us are really struggling financially.  I wonder if any unions would be prepared to contribute to an independent campaign run by disabled groups?  I shall continue to support 38 Degrees as much as possible re NHS etc. 

  • Susieb1211

    Alex I dont agree that 38 Degrees have the money to save trees and circus animals.  It is all donations.  My sister lives in a thatched cottage in the New Forest.  There was huge support for the tree campaign where she lives from all the (in my view) very well off people who live there.  Those people are not interested in the welfare state generally.  And I am sorry I am generalising as my sister is.  But we cant blame 38 Degrees for what the public are prepared to support and what they are not?  But we can encourage an education campaign?

  • Neil

    So will I. In fact, I’ve just filled in the energy bill survey that’s currently on the front page, because fuel poverty matters too. I’ll only be withholding my monetary support.

  • Redisbleu

    We have actually tried to get the Hardest Hit groups on board with support, however that is fraught with its own difficulties as even with as big as the hardest hit march was, it was barely in the press.  More to the point, the big unions and organisations are actually receiving funding to get us all “back into work” whether we can actually DO that work or not. They placed bids to the government to push the work scheme at whatever costs…even if those costs are completely detrimental to our health.  They’re not out for our best interests anymore, but their own government subsidies.

    We are very much between a rock and a hard place…and if I recall, the petition against the MP who called 38 Degrees supporters zombies didn’t require a bunch of funding, just people willing to sign.  Same with the petitions for trees.  So the fact we’ve already got a petition ready to go (Pat’s Petition) and yet no one can be bothered to even put a link up and write an article to 38 Degrees supporters because the cause isn’t “popular” enough is  bitter pill.  None of 38 Degrees’ other campaigns needed to have a bunch of money to do…and yet we’re being told it’s harder for a campaign for disabled people to get off the ground.  I am not quite buying the argument that people “don’t understand”.  It’s not hard to explain.  It just seems like we’re just not considered cute and cuddly enough to save…and that says volumes.

  • judy

    Just seen a tweet – “”The planned badger cull is immoral, inhumane and ineffective”

    Yes. It is.  And so is the planned cull of sick and disabled people. 

    Overdramatic?  Sensationalist?  It might seem so to you who are not being affected, but believe me if you were one of those unfortunate enough to be seriously ill or disabled then you would think very differently.  And you may be in the future.  Then it will be too late to do anything about it.

    I feel like we are all screaming and no-one is listening. 

    Silent screams.

    You have no idea how terrifying it is.

    Please 38 degrees members, do something about this.  We need the support of those who are healthy and able-bodied.  We need you to stand up for us. 

    To amplify our voices.

    To let people hear our screams before it is too late.

  • David Gillon

    I’ve suggested both Pat’s Petition and the new Independent Living Fund petition http://epetitions.direct.gov.uk/petitions/24368 to 38 Degrees as easy ways for them to show that they’re listening to us. Just email it to the members and suddenly everyone can see that 38 Degrees is doing something. Still waiting for a reply.

  • David Gillon

    38 Degrees defines itself around the polling process it uses to determine what to campaign on. If that polling process is flawed, then 38 Degrees is also flawed, and 38 Degrees have to find it in themselves to confront that flaw. Do they hold up the biases of their members as a triumph of democracy? Or do they try to address those biases, the gaps in their knowledge, and create a democracy in which everyone can have a voice, even disabled people and other disenfranchised minorities.

  • David Gillon

    Part of the reason we’ve focussed on 38 Degrees is that Disabled People’s Organisations such as Where’s the Benefit, Broken of Britain, DPAC and so on have already been campaigning on this for more than a year. Even when Hardest Hit organised the biggest protest of disabled people in UK history, the media barely acknowledged we existed. We need the penetration that groups like 38 Degrees have into the general public in order to get our message out, because trying to do it on our own isn’t working, no matter how elequent we are, the media just aren’t interested in repeating it. 

  • Hope

    Surely part of the vision of our new and caring version of democracy is that people of all walks of life come together to assist the less well-abled (of body or mind)– and practise the “you’re only as fast as the slowest in your team” type of mentality.
    I have read every single blog on this page and I am left with no doubt in my mind that it raises some very huge issues of fundamental importance – that have been hitherto overlooked. So I thank David Gillon and everyone else who has contributed to this enlightening debate, for opening the eyes of the “blind” amongst us and helping us to evolve, not only as a people-powered organisation, but also as PEOPLE.
    I have no reason to doubt the completely benevolent intentions behind 38 Degrees. After all, where would we be without them? – further up the proverbial creek than we are, that’s for sure.
    But we are all of us human and I am sure that those Team Members sitting in their small room at the hub of this amazing movement are all more than willing to learn. The organisation is still in its infancy, relatively speaking, and still taking baby steps and so bound to make mistakes along the way.
    But it’s what and how we learn from those mistakes that counts. That is what sets us apart from less-evolved models of “democracy” that have fallen flat on their face at this hurdle and have expected us to clear up their mess.
    And surely this debate is, in itself, a part of our “vote for change” and, as such, an essential part of the evolution of the 38 Degrees movement, of which I feel honoured to be a part.
    It has, in essence, highlighted, as far as I can see, some major “flaws” in the system that need some tweaking. I do not profess to have any answers. Only suggestions. Which is surely what 38 Degrees – and this page – is all about.
    First of all, I can see how the polling system works well for those broader issues, such as Climate Change and Forests, which affect us all, and the NHS, which affects the majority of the UK, etc.
    However, it’s patently clear now that this system is not a “one size fits all”.
    Because it doesn’t seem to have worked for the issues regarding the Welfare Reform Bill, or for DLA and Incapacity Benefit recipients – people who are currently finding themselves up that creek – but without a paddle. Vulnerable “minority groups” (especially those who have been historically “marginalised” for whatever reason) – who are being adversely affected by government spending cuts NOW. These are the very groups that have traditionally got shoved under the radar/swept under the carpet, etc. in “normal society” – for all sorts of reasons – including prejudice both past and present. This mentality has no place in “the 99%”.
    So the sick and disabled remain in the “minority” for several reasons. Simply BECAUSE they ARE in a minority, they are far less likely to ever to make it up the polling ladder in a “first past the post” system of voting. So those groups will always be left trailing. Also, if the only place they get to set up petitions is on specialist sites – well, only a minority of interested/directly affected people will be searching those out and navigating to those pages. They’re not exactly sitting in our Inbox are they? And, as David Gillon says, they need the penetration that groups like 38 Degrees have into the general public in order to get their message out.
    I know firsthand what it is like to be incapacitated. “Simple” day-to-day chores of keeping oneself together and just carrying out the tasks that able-bodied people take for granted become all-consuming. It can wear you down. And when you already feel completely done in – you simply do not have the reserves of energy to start campaigning – It is the last thing you feel like having to do – you only do it because you have to and you know nobody else will do it for you, on your behalf. But you still wish they would. But they still don’t…
    So I propose that we change all that NOW.
    I suggest that – as long as the plight fits under that umbrella of Being Adversely Affected by Barbaric Austerity Measures – that once it has been brought to our attention – regardless of how many people “like” it or not – and regardless of whether or not that particular wolf is baying at “MY” door or not, it should be given special consideration and dispensation, We are all part of the whole. And we are all in this together. That is surely the whole point?
    What to do next could be dependent on its priority according to the urgency or imminence of the proposed effects.
    If it is not urgent, it could be incorporated into the next campaign poll – with some information to properly inform the voter. BUT perhaps under a new “banding system” that is equipped to address, as a separate category, such issues as those experienced by “minority groups”? This way, they have a hope in hell’s chance of getting a look-in and reaching the top of that ladder, at least.
    If it IS urgent – and “already happening now” – which is clearly what is happening here, a petition should be automatically launched. The public can then either choose to sign or not sign. If the case is made eloquently enough – with the fervour and strength of feeling that this one has obviously been presented (and received, judging by the feedback) – then it will surely “appeal” – even to those who have been blessed with great health all their lives. So far.
    I don’t see how any of these suggestions fly in the face of Members choosing which issues to campaign on. And I’m sure that – if asked – they would be well up for it. Regarding this one – there isn’t really time – Time is of the essence here. But an article could always be published by the 38 Degrees Team to run alongside this launch, explaining your reasons for the Urgent Launch, asking if anybody felt offended by/objected to your doing so, referring them to these blog pages and asking for feedback regarding introducing an improvement to the current polling system that is able to take account of and RESPOND TO  such eventualities? Without being caught up in the red tape of hard-and-fast rules and regulations.
    So, as far as this case is concerned – I believe that we OWE it to our fellow citizens to become involved and offer our support. Simply because they need us – and because they have asked for our help.
    I am about to make a donation and I am going to request that my contribution be allocated to the running of an IMMEDIATE ONLINE PETITION specifically for the very issues (Welfare Reform, DLA, ESA) that have been raised on these pages.
    I do hope that those of you who feel hurt and let down by 38 Degrees will be given, by 38 Degrees, every reason to “return to the fold”. We all value your support in our common struggle and you are not alone. I am sure that so many people who read or have read your stories will be moved beyond belief – and WANT to sign a 38 Degrees petition.
    This is my first proper blog to this or any other site – but this time I felt so moved that I couldn’t help but sit down and write you a letter. I feel quite ashamed on behalf of all of us who have let you down so far. I really hope that David Babbs and the rest of the 38 Degrees Team/Members do the right thing and back you up on this. In the name of Democracy and Humanity at least!!!!
    With love and thanks to all xxx

  • Alex Greene

    It has now officially gone past the “moving it up the rankings” stage, to the “You blinked and you missed it because it happened and got right past you while you dithered and ignored the voices screaming out the warnings at the top of their lungs” stage.


    This blog, for the last 18 months, has charted the increasing demonisation of the disabled. This last week has brought two incredibly evil and egregious new developments:-

    - The restriction of benefits for cancer patients to ONE YEAR;

    - and now, the slashing of benefits to DISABLED CHILDREN by ONE HALF.



  • Hope

    A note to David Babbs and the 38 Degrees Team:
    It’s weird how when you read something back it doesn’t quite come across as you meant it to! Just to be clear – by “the red tape of hard-and-fast rules and regulations”, I wasn’t implying that I consider that that is how I see the workings of 38 Degrees as being bound up in. I fully understand and value your ethos of Members choosing what we campaign on – and wouldn’t want it any other way. I just mean that sometimes we might be presented with situations that sometimes call for a slight modification of those “rules”. Hey, I hope you understand – I definitely didn’t mean to offend or question the fundamental ethics of 38 Degrees!
    And thanks for all your great work!! x

  • Hope

    I didn’t personally “blink and miss it”. Neither have I been “dithering” nor ignoring any voices… I have written several letters to Mr Cameron on these very issues. Not that I got any replies.

  • florencebelle


  • David Gillon

    ‘Giving us a voice’ is the reason we’re having this debate, and doesn’t mean for a moment that we don’t support all of the other work that 38 Degrees does, but if that voice isn’t accessible to people who are already denied a voice by the media and parliament, then isn’t that something we should be talking about? 

  • Redisbleu

    Sorry Hope, I don’t think he was having a shot at you personally, but we’re now feeling the panic rise here as the Welfare Benefits amendments are currently being debated in the House of Lords…and the results are rather frightening.  It’s great that we’re getting people on board now – or at least they are reading the article and getting behind us now, as your entry attests and I thank you very much for writing it.  But we are starting to feel now like it’s too little, too late.  We still haven’t seen any action from 38 Degrees other than publishing this article…and yet I’m still getting emails from 38 Degrees asking for money to support their many causes…and I don’t seem to be one of their causes.

    We’re doing our best to put information together, and there is actually a petition called Pat’s Petition to call for a halt and review of the cuts, but it requires 100,000 signatures…and signatures are very slow.  So the petition already exists, we even have the research and paperwork to back up why the cuts are such a bad idea…and yet still…38 Degrees isn’t doing much and asking repeatedly “What Can We Do?” while the clock keeps ticking.  

    So yes, carry on and please do let 38 Degrees know how you feel.  And thank you..thank you…thank you!

  • Hope

    I’ve just written this email to the 38 Degrees Team (I HOPE it helps):

    Hi there Laura and the 38 Degrees Team
    The other day I was reading the blog by David Gillon about the atrocities of the Welfare Reform Bill and the slash-and-burn cuts in Disability Living Allowance Incapacity Benefit, etc. and the terrible hardships that these “austere measures” are inflicting on innocent people. I believe that several people have already taken their own lives.
    I wrote a response to the article on the blog page the other day and will enclose a copy of that as an attachment here for your perusal.
    The sick and disabled, alongside children, make up perhaps the most vulnerable sector of our society. I feel very strongly that we should, as a Team, intervene and do our utmost best to help the thousands of people who are being adversely affected by government brutality. It seems as if the government really is out to get them.
    These people really do need our help and support – Where else will that come from, if not from us? That this is something that is happening in our country and comes under the umbrella of Human Rights Abuse (in my book anyway), then this is not a matter we can overlook. I feel that if we can respond with such speed and agility to the Health Minister calling us Zombies then we can also surely be able to respond with at least as much fervour to this!!!
    As you know, I am an ardent supporter of 38 Degrees, and will continue to join in campaigns, but I must admit I am struggling here with this. Apart from the fact that we appear to be marginalising a valuable sector of our community, I don’t feel it is right to leave victims of this barbarism in limbo without feeling that they have anywhere to turn.
    I do hope that the Team will give this some serious thought. To be honest, as a 38 Degrees member and advocate of equality and freedom for all, I can’t understand why this debate is actually occurring and why there wasn’t an immediate response when victims first turned to 38 Degrees for help. The government must be laughing their socks off and rubbing their hands with glee if they were to look in to these pages! Let us have the last laugh!!!
    Thank you for reading this. I look forward to hearing your response (preferably backed up with a Campaign against the Welfare Reform Bill!!)
    With kind regards

  • Hope

    Thank you Redisbleu!
    I really appreciate your kind words.
    I will continue to do my best and have just sent an email directly to 38 Degrees – a copy of which I’ve just posted on this page. Let’s hope others write in too.
    I signed Pat’s Petition a few weeks ago and forwarded the link on to as many people I know. But I really share the belief that a 38 Degrees petition - because it has the capacity to reach a much wider audience, and practically overnight - would get a much a faster response.
    With best wishes (and thanks again for noticing!)

  • David Gillon

    I want to say thank you to Hope for her reply, particulary because it goes beyond acknowledging the problem to proposing a potentially (IMO) workable solution.

  • Antony

    I  have been a 38 degrees member since early 2011 and I just read David Gillon’s post.

    I am trying to temporarily put aside my shock at what I have learned from his post because I believe the following:

    1) 38 degrees is a tool for citizens of the UK to try to make our world (whatever boundaries you define) a better place

    2) It is not a perfect tool and currently it is not helping marginalised groups

    3) I believe David Babbs and the 38 degrees team would already like to find a way that 38 degrees CAN help marginalised groups, but feel that having one person (David Babbs) steer its actions would undermine it (I also feel it would be unfair to put this responsibility on David Babbs – if he were to promote one campaign over another then he would have the weight of responsibility of the underdog campaign on his shoulders and that could often include people’s lives)

    4) The most important thing I can do right now is not to debate 38 degrees or its motives or even the (extremely important) issues above, but to come up with workable suggestions of how 38 degrees can be improved (immediately) to help marginalised groups, outside of just nominating David Babbs to decide what is important.  

    Our strength is not in the few people making comments here or even in the 38 degrees team, it is with the one million members – we NEED to find a workable solution to get through to THEM without having them feel that 38 degrees’ integrity has been compromised.

    I will therefore propose that the following is the first problem:

    There are 112 comments on this page, many of them long, spanning many pages.  It is therefore a poor place for anyone to try and determine what suggestions have already been made and improve upon them (despite reading for over an hour and searching I cannot find any suggestions among the comments of how to fix 38 degrees in this way – they may be there but I can’t find them and I certainly wouldn’t be able to find them all)

    I think the best solution for this would be if a 38 degrees member of staff were to monitor the comments on this page and either condense them into a list of suggestions people have made along with condensed objections or potential issues etc.  This would allow someone trying to help to look at the list, think about it and make further suggestions without having to read 30 pages of comments.  This could be a page which is linked to from this blog post or it could even just be a list added to the bottom of the post and updated as comments come in.

    Assuming that solution is workable I will make my suggestions for how to improve 38 degrees to support marginalised groups:

    I cannot speak for one million people but my feeling is that although the media thinks disabled people are scroungers and there are even a minority who are so base and stupid as to abuse disabled people simply for being disabled, I suspect that most of that one million people would react in a similar way to me – with shock and a desire to help.

    I did not choose the DLA campaign in any of the previous polls.  Why?  Not because I cared more about power bills than disabled people being made homeless and committing suicide, but because I was not aware what was at stake.  I could have researched each campaign more but look at the poll page:


    There are 21 campaigns and no links to additional information.  I want to help but I work and I have 2 kids and I am tired, just like the other 999,999 members.  I can’t read thoroughly about 21 campaigns much less search the 38 degrees site for further info.  I’m not even so familiar with the site that I know there *is* any more info on these campaigns.

    I think the page should be laid out very differently.  At the moment each campaign gets just one line and zero information.  There are statistics in David Gillon’s post that are shocking and that **clearly convey what is at stake in the campaign**, this is very much lacking in the poll page.  

    My suggestion is that the poll page should be a 2-column grid with the following information about each campaign:


    What is at stake (What will happen if you do NOT choose this campaign)

    Key Facts

    This page is likely the only exposure the million members will get to the campaign, and in June they got just:

    11. Stop cuts to the Disability Living Allowance

    I think if the campaign had been listed as the example below it would have been a very different poll.  I think if we do go with this suggestion then there should be a poll organised soon and DLA should be manually added to the next poll given there were previously issues and this could help redress the balance and get a campaign going.


    Stop cuts to the Disability Living Allowance

    Whats at stake?

    - Many disabled people are considering suicide when their benefits are stopped, some have already committed suicide at the prospect

    - 108,000 disabled people could be made homeless

    - 400,000 disabled people will receive no benefits until their pensions and savings are reduced to zero

    - Disabled people in residential care will be given no mobility allowance (children will not be able to see their parents, disabled adults will not be able to see their partners and children)

    - Families with disabled children will lose 1400 a year

    Key Facts

    - Disability fraud rate is 0.5%, not 75% as tabloids report

    - French multinational ATOS is performing welfare assessments so poorly there have been 16 post-assessment suicides

    - 1 in 8 ATOS decisions is overturned in appeal costing the taxpayer 50m

  • David Gillon

    Two very good points. Attaching a summary of issues to each item on the poll would allow people to vote in an informed way rather than one informed by the biases of the media. Summarizing the point made here to date is an eqally good suggestion. I’d volunteer to do it but I’m away from home and just barely keeping up with the debate via 3G.

  • Redisbleu

    These suggestions are indeed rolling in, and yet we keep hearing the same thing: “What can we do to help?” So this blog, and then more suggestions and still…nothing. Meanwhile, other causes are being pushed…and this blog is sinking into the “archive” section.

    It’s very difficult to not feel that we’re just being ignored as “not popular enough”.  And, like or not, we are DISABLED.  This means we need help with campaigns and putting things together.  The sheer amount of energy required to keep going is nearly impossible for us.  One of our better known campaigners, Sue Marsh, actually has had to make the choice to fight for her own DLA or fight for the disabled…that she was even turned down for DLA at all is utterly boggling, but she literally doesn’t have the energy to fight her own battle right now.


    We’re sort of beyond the talking stage now, a bit beyond the “debate” as well.  Something actually needs to be DONE.  So if you’re offering, please do.

  • Antony

    Hi redisbleu,

    As an update to this, I have emailed the 38 degrees team with my suggestions a few days back and they have responded saying that:

    1) They would like to give more info on the campaigns when they do a poll but if they chose that information they would be open to criticism for cherrypicking and steering opinion of its members (so as I understand it they would like to find a democratic way to source or verify that info)

    2) The person that responded to me at least said they thought the idea to email members was a good one so hopefully we will get a lot more suggestions back and some or many or them will be viable.

    I have responded and made the suggestions that:

    1) Wikipedia resolves this primarily through reliable 3rd party citations and mass corroboration / challenging of facts.

    2) Someone could be voted in as a ‘champion’ for each campaign in order to prepare the key facts etc for the campaign and then champions for each campaign could challenge facts from other campaigns or it could be generally combined with 1)

    As for me personally, I can’t influence the 38 degrees team more than what I’m trying to do now and 38 degrees is the only way I know of that I have ever been able to have any impact on UK government.  

    I have looked at Sue’s site and thankfully there are some people more qualified than me offering to help her with her appeal and research.  I have tried to donate 100 pounds to the research fund to push it over the target but it says they payment failed because she can’t receive payments just now?

    As an individual I can try and help out a bit but my time and resources are just very limited.  They way I see it if I can find a solution the 38 degrees team will accept quickly as being democratic enough then they may still be able to mobilise a huge number of people and actually get the government to do something.

  • Rose

    Perhaps if 38 degrees would look upon the disabled community in the same way they look at dumb animals (maginalized with no voice) then they might look more favourably on promoting campaigns for the disabled.

  • Rose

    Sorry that should read marginalized.

  • Redisbleu

    Sue is trying to contact paypal at the moment about the campaign funding.  It seems we’ve actually got the funding and now just need people to mail the findings to their constituency.  Waiting in the wings now.

    Thank you for sending your suggestions to 38 Degrees.  Do chase them up if nothing shifts, as the WRB talks will round off very soon and we still have a lot to fight.

  • Holly Ferrie

    Thanks David. I have been denied DLA and am hoping something is done – but despite having walking difficulties I am one of the lucky ones. There are far too many disabled people who don’t even have the privilege of being able to comment here or request a petition. It’s time they stopped being marginalised.

  • Redisbleu

    So…it’s been a few months now, I’ve had three emails asking for funds, there are several new campaigns up and away….and still, absolutely nothing from 38 Degrees on this.  I have gone from shocked, to willing to meet in the middle, to wildly optimistic.  I am now absolutely appalled.  

    I’ll be unsubscribing from 38 Degrees forthwith.  So absolutely not impressed.

  • John

    So no money from me.  As someone who is interested in the vicious tactics of Atos it seems your outfit is not prepared to take on the sewer Tabloids attack on the diabled- Houston you have a [big] credibility problem.

  • Rose

    Ditto from me.

  • David Gillon

    Looking at the comments again, it seems one really significant factor that 38 Degrees haven’t paid attention to is the synergy between disability issues and other campaigns. Disability and the NHS, Disability and the Media, there’s so much opportunity to have one campaign leverage off the strengths or ’voter’ appeal of another without requiring significant expenditure of resources, whether those be time or money. I’ll be back to having better than intermittent net access next week and I’m aiming to pick things up from there in the hope of allowing our voices to finally be heard.

  • Neil

    Well, here we are in January 2012, a full month after David wrote this post. What has 38 Degrees decided to *do* about the problem?

  • Rose

    Has anyone seen the recent article about Boris Johnson and DLA
    and the article on
    38 degrees should use the information and get people interested in a debate on DLA etc.

  • Brian196

    Evil political greedy non empathatic arsholes what more can be said

  • Rose
  • Mounter

    We need your voice and a lot more like you to air your thoughts on these problems. I am sure that the vast amount of 38degree member share your thoughts but not sure  what to do. Give our team some idea and I am sure that the bulk of the members will pick up the sword

  • Corrie

    I agree with everything above. Very eloquent, David.  referring to democracy, as a member of an Occupy group, I have seen how, particularly when people are not able to be present, unless they are an alpha male or suchlike, their views & needs can easily be swept away. So even working with a General Assembly format, using consensus, democracy is flawed. As a long-term member of 38 degrees, I demand that vulnerable & disabled people do not get side-lined, resulting in suicides….
    Our band dispraxis wrote a song
    Atrocious Tyrannical Organised Suicide
    It will be on soundcloud soon at http://soundcloud.com/dispraxis/sets/dispraxis-2011/


  • LW

    Why have 38 degrees not campaigned to stop the move to time limit contributary ESA, or the move from DLA to PIP? These are huge issues that affect so many of us – and no-one knows when they will be in the same boat. I was fit and healthy until recently, now I have joined the underclass of ‘benefit scroungers’.

    If the government get their way (and the Lords vote on this tomorrow) I, and other like me, will be limited to just 12 months Employment Support Allowance (the replacement for IB) after working and paying into the system for more than 35 years. Where was 38 degrees when this was happening?

    If the move to abolish DLA goes ahead, amny thousands of people will lose vital financial help. The government have stated that they intend to cut 20% from the DLA bill, despite admitting a fraud rate of only 0.5%. Where was 38 degrees when we were fighting against this?

    I will not donate to 38 degrees until and unless they give disabled people a voice and fight alongside us in these campaigns.

  • Als

    Huh?  We’ve made plenty of suggestions.  How about the “halt and fix the reforms” petition that we needed a year ago?  Despite Pat’s petition, 38 degrees could set one up still, though it’s too late really, and you’d get thousands of signatures overnight, so why haven’t you?  How about an anti-scrounger-rhetoric briefing sent out to all subscribers to raise awareness of how demonised disabled people are and how the Government is deliberately misrepresenting ESA figures to make it look like the system is full of frauds?  There have been a lot of ideas, they’ve just been ignored.  Thank you for your friendly and positive tone at least, but your comment is based on innaccuracy.

  • She LOOKS healthy

    I have signed the 38 Degrees tax dodgers and NHS petitions. I believe they address the SAME ISSUE of corporations and the privileged sectors of society getting away with murder whilst the government attacks those who are in need of some support from society just to survive. In an egalitarian, civilised society this would not be an issue…. but it is THE big issue for our democracy - so why are 38 Degrees taking no action on such a terrible and shameful part of the problem? The coalition seems to see all this as one issue and is taking co-ordinated action across the board, so, why not 38 degrees?
    I worked full time with my disability for a decade until it got worse and I couldn’t work at all. I currently get contributary ESA and DLA. I have had awful experiances with ATOS and can easily see how the way they treat people can be the last straw - although I can’t see how the people ATOS have sent to my house could be certified as ”health professionals” in any sane world. My last WCA was eventually overturned at tribunal but it was still humiliating, I felt I was a criminal on trial. That decision took almost a year because the system is now overloaded with these appeals, many people lose all their income whilst waiting for their appeal, if that isn’t guilty until proven innocent then what is?

    I’m now due for another WCA, oh the suspense! – will I lose my right to contributary ESA when the welfare reform bill goes through? – or will ATOS “medical professionals” beat the coalition to it? How will so many honest and deserving people cope when these changes devastate their lives? Why has 38 Degrees done NOTHING? How is any of this right?
    What is most terrible is that there are many disabled people much worse off than me and we are not only ignored but are slandered as criminals.

    Thank you for your article and the links David.
    I will not donate to 38 degrees until and unless they give disabled people a voice and fight alongside us in these campaigns.

  • Anonymous

    The Government state that there has been a massive increase of DLA recipients over the last eight years, this is due also to our servicemen and women coming back from Iraq and Afghanistan with severe wounds and becoming disabled.

  • David Gillon

    Unfortunately government statements aren’t backed by fact, and the rise is largely due to demographic effects, this has been pointed out repeatedly, most recently in the Spartacus Report, but the government keeps using a line it knows is false. Where I come from we call that lying.

  • David Gillon

    While I’ve been trying to get 38 Degrees to do something through blogging both here and on my own blog, a group of disabled people, several of whom I’m proud to think of as friends, have produced the Spartacus Report http://diaryofabenefitscrounger.blogspot.com/2012/01/i-support-spartacus-report.html It was written and produced by people who are often too ill to campaign, funded by disabled people through their own donations, and it made a difference. On 9th January, release day, #spartacusreport trended on Twitter, on 11th January, the government lost three key votes on the Welfare Reform Bill. The Spartacus Report made a difference, we’re still waiting for 38 Degrees to do something.

    I am Spartacus.

  • http://www.facebook.com/people/Zhivila-Agbah/570483039 Zhivila Agbah

    I notice 38 Degrees on the BBC News last night commenting on the wonky tits scandal. As a person with an invisible disability, It galls me that 14,000 women, most of whom CHOSE to enhance their cleavages, have gained more press attention and more public support than the 3.2 MILLION disabled people currently at risk of being plunged further into poverty, unemployment, forced employment, depression and suicide, and the strain it will place on their families and carers. I am living on my DLA of £19.55 a week. I have not yet applied for ESA, I didn’t know I could, and I am not even sure I will get it.

     On the BBC news right now (12/01/12, 3.23pm Sky 503) the theft of 300 shopping trollies has been reported. 300 shopping trollies are more important than 3.2 million disabled people, it would seem. I ask, what is more important to 38 Degrees?

  • Rose

    38 degrees have obviously gone tits up.

  • David Gillon

    I don’t think it matters why someone faces medical problems, only that they do. But the lack of press coverage of the effects of the Coalition cuts does raise very large questions, and press responsibility is supposedly one of the areas 38 Degrees is concerned over. Again we see synergies between our concerns and those 38 Degrees has supposedly focused on already, the opportunities are there, but they aren’t being exploited. 

  • Neil

    I’m amazed 38 Degrees haven’t added their support to the Responsible Reform / Spartacus report. The nature of the problem and the depth of feeling amongst the public could hardly be clearer. Following up on cases where the Government shows a lack of integrity has been 38 Degrees’ meat and drink for a year or two now, so the Spartacus campaign is a golden opportunity for 38 Degrees to catch up on disability issues.

  • Redisbleu

    Honestly, Als nailed it.  We have DONE the lots of suggestions.  Scroll down, we’ve said over and over and over what could be done.  But the only response seems to be “Yes, but what can we do?”.  *facepalm*  

    So, what we decided to do, as it became very apparent no one else would, was to release the Responsible Reform Report – otherwise known on twitter as the #spartacusreport.  I helped to fund it, and helped to submit the Broken of Britain’s consultation sent out in January 2011.  That has taken off…it’s a shame, as I’m sure 38 Degrees may have wanted to be part of that to toot its own horn, but oh well!

  • David Gillon

    I specifically asked David Babbs to get 38 Degrees behind the Spartacus Report a couple of days ago. If 38 Degrees can get tens of thousands of members to sign up to ‘I am not a Zombie’ within a couple of days of a ministerial faux pas, is it really so much more difficult to get them saying “I’m Spartacus” after the biggest government defeat of this parliament? There are clearly issues with our being disenfranchised, but the inertia in the face of clear opportunities worries me even more.

  • David Gillon

    Another synergy that occurred to me today – disability and fuel prices, disabled people have the worst fuel poverty levels of any group.

  • Angie_cherub

    I agree with your comment regarding fuel poverty David. I like many others cannot go out without my car. It needs to carry my wheelchair which does not have a collapsible backrest because I have a spinal injury hence it is a larger, automatic. I am lucky to get 24 miles per gallon. I have to limit my journeys. Of course fuel is yet another thing that has to come out of my disability money as well as my contribution for my direct payments, someone to keep the garden tidy, window cleaning, my specialist medical mattresses (X2, one in bedroom, one on day bed), Motability car valeting, supplements recommended by the consultants but not available on the NHS and so on, and so on………………… especially as I also have the upkeep of my own home. I need to keep it well maintained as no doubt it will pay for my residential care for a while as I deteriorate further along the line.
    I am not ungrateful but as a female I paid my full National Insurance even at a time when I had the option of reduced contributions.  Oh, what I would do to be able to work…….I loved my career.
    Still onwards and upwards. I need to carry on scouring charities to try and find the £4,000 shortfall from my NHS wheelchair voucher so that I can purchase the wheelchair that meets my postural needs.

  • Angie_cherub

    I agree with your comment regarding fuel poverty David. I like many others cannot go out without my car. It needs to carry my wheelchair which does not have a collapsible backrest because I have a spinal injury hence it is a larger, automatic. I am lucky to get 24 miles per gallon. I have to limit my journeys. Of course fuel is yet another thing that has to come out of my disability money as well as my contribution for my direct payments, someone to keep the garden tidy, window cleaning, my specialist medical mattresses (X2, one in bedroom, one on day bed), Motability car valeting, supplements recommended by the consultants but not available on the NHS and so on, and so on………………… especially as I also have the upkeep of my own home. I need to keep it well maintained as no doubt it will pay for my residential care for a while as I deteriorate further along the line.
    I am not ungrateful but as a female I paid my full National Insurance even at a time when I had the option of reduced contributions.  Oh, what I would do to be able to work…….I loved my career.
    Still onwards and upwards. I need to carry on scouring charities to try and find the £4,000 shortfall from my NHS wheelchair voucher so that I can purchase the wheelchair that meets my postural needs.

  • Angie_cherub

    With regards to my previous post, apologies that it was submitted twice. initially I got a message to say there was a problem and it had not posted…………………or perhaps I inadvertently double clicked my mouse as I have my thermostat set at 14 degrees and my hands are not only stiff because of the arthritis!  Too scared to heat my house to an appropriate level as additional heating for people who are at home all day, and mobility limited is yet another thing that comes out of my disability money. Heartened to hear that 38 degrees have impacted on energy prices. Perhaps that is what you were referring to by fuel prices David?

  • David Gillon

    The obscene levels of fuel poverty for disabled people (I’m another who needs heating constantly on lest their condition worsen) are just another one of the synergies I’m trying to draw to the attention of 38 Degrees, to demonstrate that campaigning on disability issues will actually strengthen many of their other campaigns, not divert from them. With DLA up for the chop on Tuesday, and ESA time limiting simply delayed rather than averted, that fuel poverty for disabled people is likely to worsen, even if the petition to the the energy producers succeeds – no matter how low the price, it’s difficult to pay for it if you have no income whatever, which is what several hundred thousand disabled people, I’m one, still face under the Welfare Reform Bill.

  • David Gillon

    “try and find the £4,000 shortfall from my NHS wheelchair voucher so that I can purchase the wheelchair that meets my postural needs.”

    There’s another aspect of disability provision that most people don’t even realise is an issue. This one isn’t up for any cuts that I’m aware of, but that’s probably because it’s already a national scandal and not something they could actually make worse if they tried. One of the things I’m doing this weekend is debating whether it is finally time to kick my GP and get the referral to Wheelchair Services I’ve been putting off for a decade. I’ve looked into it before and been told that as a part-time user I would get, at best, the cheapest chair and cushion they offer. But postural and seating difficulties are at the core of my disability. A basic manual, user-propelled chair can be had for £50-200, so most people assume that’s the sort of costs we’re dealing with. I wish. My disability means I probably need a chair individually fitted to me. Even with just basic seating and standard sizes that’s already £1000 or more, but I can’t sit on a sofa or any kind of chair for any length of time, so there’s not much hope I can tolerate a basic wheelchair seat. Just adding a high-end cushion might cost several hundred pounds and if I need tilt-in-space so that I can lie flat in the chair, there’s another thousand or more. All of a sudden we’re somewhere north of £2000, and that’s just for a self-propelled chair, make it electric (my arms are getting iffy, trying to figure out what’s happening there is one of the reasons we haven’t pushed the chair issue yet) and you can easily double that cost. A powerchair to meet fairly common specialist needs can easily run £15k or more, that’s more than my car cost new. But most people assume a wheelchair runs a couple of hundred at most (and most airlines treat them like they didn’t cost even that!).

    Those are the costs, but they aren’t what Wheelchair Services will fund. As I say I’ve been told I’ll get the most basic level of provision, so I might get a voucher for £50, I actually want the referral for the fitting and usage advice, not for any financial contribution, because I’m likely to need something costing several times what they will fund. The position for people who need powerchairs is even worse, a friend was recently turned down for one, despite the fact she struggles to stand at all and certainly can’t propel a manual chair. She was turned down for two reasons, and they are a set of reasons that disabled people hear time and again. 1) She can stand. She might not be able to get anywhere without help, and certainly not safely, but just being able to stand disqualifies you from eligibility for a powerchair. 2) her house is too small for her to use it safely inside. She needs it for outside, not inside, but if it can’t be used safely inside, then you can’t have one for outside. They did offer her a manual chair, but she can’t actually use one. Kafka has nothing on Wheelchair Services.

    So that’s why disabled people end up trekking from charity to charity, hoping one might come through with a grant to fund the cost of the chair they actually need. People see WhizzKidz providing wheelchairs to disabled kids and go ‘Awwww!’, but never stop to wonder why they are having to rely on a charity, or what happens to them when they grow up and aren’t covered by WhizzKidz any more….

  • David Gillon

    Less than 24 hours to save DLA. UKUncut and Occupy are in the fight, but still nothing from 38 Degrees. I despair.

  • Angie_cherub

    The thing is David I didn’t expect 38 Degrees to take action. They are hiding behind notions such as democracy and ruling by the majority leaves us ‘dregs’ discarded by the wayside. As a scholar of psychology, and prior to acquiring my disability I would never have understood how impotent I feel.

  • David Gillon

    The DLA changes were voted through today. We forced some concessions, sufficient Baronness Tanni Grey-Thompson felt she had to withdraw one amendment trying to ensure assessments take medical evidence into account, her second amendment went to the vote and lost by only 16 votes. If we had had the support of 38 Degrees, could we have forced that through? Sadly Baroness Campbell’s amendments, including the one to keep ‘Disability’ in the name of the new benefit, had to be withdrawn because she has been hospitalised.

    By government estimate, 500,000 disabled people will now lose their entitlement to benefit, the draft PIP regulations released only yesterday, far too late for any kind of realistic assessment of their impact, will mean that, amongst other things, wheelchair users will not automatically qualify for Higher Rate Mobility. There are lots of very scared disabled people out there. I don’t even get DLA and I’m scared, because the eligibility criteria for DLA, now to be PIP, are guidelines for Blue Badge eligibility, and without a Blue Badge I can’t use disabled parking bays, and I can’t even get out of the car safely in a normal width bay. 

  • David Gillon

    The DLA changes were voted through today. We forced some concessions, sufficient Baronness Tanni Grey-Thompson felt she had to withdraw one amendment trying to ensure assessments take medical evidence into account, her second amendment went to the vote and lost by only 16 votes. If we had had the support of 38 Degrees, could we have forced that through? Sadly Baroness Campbell’s amendments, including the one to keep ‘Disability’ in the name of the new benefit, had to be withdrawn because she has been hospitalised.

    By government estimate, 500,000 disabled people will now lose their entitlement to benefit, the draft PIP regulations released only yesterday, far too late for any kind of realistic assessment of their impact, will mean that, amongst other things, wheelchair users will not automatically qualify for Higher Rate Mobility. There are lots of very scared disabled people out there. I don’t even get DLA and I’m scared, because the eligibility criteria for DLA, now to be PIP, are guidelines for Blue Badge eligibility, and without a Blue Badge I can’t use disabled parking bays, and I can’t even get out of the car safely in a normal width bay. 

  • http://twitter.com/kb32904 KathyB

    And still 38 degrees continue to ignore us.

    When more disabled people die because they have no financial or emotional support there may be an outcry.

    Is that the time 38 degrees get involved? Is that what it would take?

    Disgraceful alienation by a government & replicated by 38 degrees – hope they feel proud.

  • Redisbleu

    You can’t even find the link to this post on front page.  Totally…unimpressed.

  • Susieb1211

    A great many of the comments added here refer to 38 Degrees as though it were an entity in it’s own right?  A bit like the way the papers refer to “the unions”.  What I mean is that “the unions” are actually the sum total of all the members.  IN the same way 38 Degrees is just the sum total of those who wish to support a particular ”cause”?  I have a huge interest in disability as I am the full time carer of a disabled son who is now 18.  But as “the unions” cant dictate to their members what will happen (although the papers like to suggest they can!) it is the members of 38 Degrees who have to make individual choices re what they support and what they do not.  The word “member” is not even really correct as some people may support (for example) the campaign to prevent the sell off of our forests but they may be totally in favour of demolising the welfare state.  38 Degrees (as with any union) is only as strong as those supporting each cause.  The only thing that I can think that could be done to help us is the ability of a group, say a disabled group, to request that the 38 Degree team send an email to all those registered trying to make people aware of the issues?  However if this was done for us I guess many many other groups may want the same facility?  I dont know how it would work?  In the mean time there are many organisations running campaigns.  UKUncut I think are trying to raise awareness re welfare cuts generally.  I shall continue to support all the 38 Degree campaigns that I agree with and will continue to try to spread the word re our issues to all and sundry!     

  • Susanas

    Totally agree hen welcome to my world, x

  • susanas

    Please to meet you all so they are no listening to yous then well what you gonna do about it then?

  • Susanas


    Read this David x you are right so many peole scared to go out and campaign etc  the worst I have evr seen it even disabled people themselves trying to say they might be more deserving than the next x

  • David Gillon

    The problem we face as disabled people is getting our message out past all the scrounger rhetoric. People don’t know what the real issues are, how desperate we are, and it has become clear that even the 38 Degrees members don’t understand our plight. This blog was supposed to be part of identifying that plight to the members, a recognition that 38 Degrees has an accessibility problem that disenfranchises disabled people, but it can only be effective at addressing that if the 38 Degrees permanent staff will drive that message out to the members, and that doesn’t seem to be happening. Disability groups have been asking for the support of 38 Degrees for the past year, and I’ve been asking for that support regularly since November, and things seem to be going backwards.

  • Redisbleu

    We have been doing it – Spartacus Report and Responsible Reform, contacting the lords and MPs and continuing to push forward.  As it stands now, half the people involved with drafting Spartacus Report are in hospital now.  We had hoped that more able-bodied people would take up the fight, and had hoped we could count on 38 Degrees to assist with that…however, that hasn’t been the case.

  • Anonymous

    why isn’t 38 degrees campaigning on behalf of disabled people? this is disgraceful

  • Tricia Williams

    I’ve supported 38 Degrees’ campaigns, and helped a bit financially. But I’ve been very disappointed to the lack of support for the issues about benefits and disabled people.
    Apart from the fact that so many people just don’t ‘see’ us, everyone should realise what will happen when we lose through dirty tricks.

    The government has stated it intends to overturn a vote in the House by labelling this bill (at the very last stage) as a finance bill. 
    This enables them to overturn all the Lords’ amendments AND stops us from using any Human Rights routes in the UK and EU.

    Lord Freud has already used very dubious tactics to overturn the will of the House of Lords – ‘unprecedented’ they called it. And one Peer said he was ‘subverting the will of the House’.

    Do you really think it will stop with us?

  • Bluesky

    38 Degrees, Where Are You??????
    Isn’t it about time you looked at supporting the approximately half a
    million sick and disabled people who stand to lose their Disability
    Living Allowance under government plans for Welfare Reform?
    The Spartacus Report, which challenged the government on their handling
    of the change from DLA to Personal Independence Payments, was produced
    and funded by disabled and ill people on
    behalf of disabled and ill people. Its creators, contributors and
    supporters (some of whom are now in hospital as a direct result of
    working so hard on the report) have been on television and have written
    in national newspapers, yet 38 Degrees stands by and does nothing to
    help raise awareness amongst their contributors. I know, I’m one of
    them. I’ve emailed and written to MPs and Lords about the NHS, I’ve
    signed various petitions and given money to help fund the legal
    challenge to the NHS bill, all at the behest of 38 Degrees. I’m glad I
    did, I’m proud to have done it, but I don’t understand why supporting
    the plight of disabled people is not seen as an equally important issue
    as voting against the badger cull (I did that), saving the forests (did
    that one as well), and the many other issues that have been brought up.
    I know all the arguments about democratic choice of the issues we
    campaign about, but this is beginning to look frankly specious. How can
    it be truly democratic if people aren’t informed of the issues they may
    well want to support, but don’t actually know about? Isn’t that almost
    bordering on censorship? Who gets to decide what’s important? I’ve had
    emails through this week from you about energy bills and the NHS, but
    nothing about the struggle of sick and disabled people to have their
    voices heard. We can’t go out and protest in the streets – many of us
    are housebound. We need the public to know what we are fighting for and
    why. We are Spartacus, and our voices should be heard! http://diaryofabenefitscrounger.blogspot.com/ http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf

  • Iceman63

    It is a joke that people on benefits are well off, in truth (the bit the political spin doctors don’t want the public to know) is that housing benefit goes to greedy landlords with half a dozen houses. While the person actually living on benefits get a measly £65 to live on. Yet the public read newspapers taking in this hogwash of political lies. Hitler got rid of the disabled too, by this method of propaganda. It worked then, and it’s working now. Who will be next? They are already working on council tenants. But of course love the bankers, and millionaires and public school boys.

  • Rose

    Couldn’t agree more.  If they quoted the figures less the rent then it would show what people were really having to survive on.  As it is, it just makes people think those on benefits are reaping 26.000 for their own use quite forgetting that the bulk of that money will be finding its way into the coffers of private land lords.

    Fight the changes call for a pause and vote for

  • David Gillon

    38 Degrees are finally asking people to throw their weight behind changes to
    the Welfare Reform Bill: http://blog.38degrees.org.uk/2012/01/25/support-disabled-people-email-your-mp/ That’s good, that’s really, really good, but it doesn’t mean this blog has
    achieved its entire purpose.

    Help fighting the Welfare Reform Bill is a huge part of what disabled people
    have been asking 38 Degrees for over the past year, but asking for that help
    has thrown light on a problem at the heart of 38 Degrees itself. An
    organisation that builds its identity around its democratic mechanisms needs
    those mechanisms to be accessible to all, but the truth is that they aren’t.
    The near insurmountable difficulties disabled people have faced in getting
    support in the 38 Degrees votes on where to campaign next are just one aspect
    of that problem; any demonised minority, Travellers for instance, is going to
    face the same issues. If disabled people are begging for support, with well
    beyond half a million of us facing losing our benefits, and we are losing, yet
    badgers are winning*, then isn’t there a problem 38 Degrees need to address?
    That’s a major problem in itself, but the problem extends even further.

    People in social housing don’t face quite the same problems in demonization that
    disabled people do, yet they are another disenfranchised minority when it comes
    to campaigning for support from 38 Degrees, Martha Lane Fox, in her role as Web
    accessibility tsar pointed out before Christmas that half of people in social
    housing have no way of getting online, and therefore no easy way to try and get
    support from 38 Degrees. That’s a feature they share with disabled adults, a
    very high proportion of whom have never been online and who, on top of the demonization, are similarly restricted
    in lack of Net access when trying to get help from 38 Degrees.

    The two groups most comprehensively disenfranchised by lack of Net access
    were the same two groups most savagely targeted by the Welfare Reform Bill, and
    the same two groups worst placed to get the support they needed from 38 Degrees.
    Even badgers have better (if indirect) Net access. An organisation which prides
    itself on the democracy at the core of everything it does cannot ignore the
    fact that those who need its help most desperately can’t even get into the
    polling booth…. 

    The fight to get 38 Degrees into the battle over the Welfare Reform Bill has
    been won, but the need for change within 38 Degrees itself remains. The principles
    at the core of 38 Degrees itself mean it cannot afford to remain an
    organisation that disenfranchises those who cannot afford to be online, just as
    it cannot afford to disenfranchise those demonised by the media or by society (particularly
    when that demonization extends into the beliefs of its supporters). 38 Degrees
    cannot afford to be seen as solely a tool of the trendy chattering classes, but
    unless everyone can access its help on an equal basis, then isn’t that
    ultimately what it is?

    * I signed the badger petition, I have nothing against
    badgers, the cull is bad science, but their cute, furry beeline to the heart of
    active, online 38 Degrees voters is the clearest example I know of the problem
    I’m trying to highlight.

  • rose

    Face book is also not accessible to people who are blind and use technology to access web sites but can’t access and leave comments on 38 degrees.

  • Angie_cherub

    ‘As disabled people face the double-edged attack of the government’s
    fast, arbitrary cuts, and a rightwing media intent on peddling fear and
    lies, this is not the time to sit quietly by’, (Frances Ryan, Guardian, 30.01.12) In response to Rod Liddle’s pathetic writing in The Sun Newspaper.


    Read Frances Ryan’s response to Rod Little’s desire to become disabled for a month……..I wouldn’t mind having my disability for a month. Is there such thing as KARMA??!


  • David Gillon

    38 Degrees has set out its stall to be the conscience of the people when Parliament runs amok, putting ideological diktat over what is right and decent. It’s difficult to think of a more extreme example of parliament running amok than what happened with the third reading of the Welfare Reform Bill in the Commons this week.

    The bare facts are that not only did the government use its majority in the Commons to overturn all the amendments made in the Lords at second reading, the seven amendments that right thinking members of the Lords inflicted on them in the name of common decency (and which bizarrely saw arch-Thatcherites like Nigel Lawson voting for the amendments and fuzzy, cuddly Lib-Dems like Floella Benjamin voting against them), but the government then invoked financial privilege, the right of the Commons to ensure the Lords do not interfere with a money bill, to ensure there can be no further amendments when the bill goes to the Lords for its third reading there.

    It’s impossible to overemphasize how significant this is, the right of financial privilege is intended to give the Commons primacy over the Lords, but only on money bills, on all other bills the Lords are expected to act as the conscience of Parliament. But now the government has made the argument that any bill with a large financial component is a money bill and subject to financial privilege. The immediate consequences are that that means the Lords have been gagged on one of the most ethically controversial bills to come before Parliament in a long time, but that may not be the end of it; the same argument could be made with respect to the Health bill, because there’s an awful lot of money tied up in running the NHS. It could be applied on a bill to erode the green belt and fast track development – there’s a lot of money in infrastructure. It could be applied on a bill for a new airport in the Thames Estuary, there’s an awful lot of money in that. And so on. Unchallenged, the government’s invocation of financial privilege for a non-money bill amounts to a major weakening of the House of Lords and a significant shift in Constitutional law.

    I’ve been trying to make the point that there are synergies between opposing the Welfare Reform Bill and other areas of concern for 38 Degrees for months now, I think the government just made my point for me.

  • rose

    38 degrees have done too little too late.

    This is an interesting artcile which explains why the welfare bill actually affects most people in this country -


    The only way forward not is to continue to press for a pause and reflect on the cuts – add your vote here http://epetitions.direct.gov.uk/petitions/20968

  • Alex Greene

    I’ve suspected for some time that 38Degrees was set up and sponsored by people vested in what we now call the Coalition, and now that the LibDems have signed up to the Tory bandwagon they have been discarded as an inconvenience – a tool no longer needed, having served its purpose of undermining Labour while it was in power.

  • Angie_cherub

     I am glad you have explained that so eloquently David.

    As 38 degrees are only paying us lip service and are claiming that they are impotent concerning minority groups, perhaps they can give consideration to explaining this latest travesty of government i.e. this ‘twist’ in the use of financial privilege. I wonder whether the government is testing this manipulation on this matter before attempting to apply it to other matters such as the NHS Health Bill?

    By the way, has anyone else noticed the huge increase in private healthcare advertisements on television lately?  I wonder how many M.P.’s have financial interests in these companies? Oh of course they aren’t that transparent, they’ve probably encouraged family members into profiting from the public’s (while those who can afford it!) fear.

    I wish I could attend parliament and shout “shame, shame, shame!”

  • David Gillon

    “By the way, has anyone else noticed the huge increase in private healthcare advertisements on television lately? I wonder how many M.P.’s have financial interests in these companies? ”

    Very late responding to this, but one of the things to notice with these ads is that the most prominent pusher of disability insurance is UNUM. Never mind their horrendous record on this in the states, guess who designed the changes in disability benefit policy – yep, UNUM. And they then created a research institute at Cardiff University for the DWP Mandarin who advised their policy be adopted, which spends its time producing research saying that people are only disabled because they aren’t trying hard enough. You really couldn’t make this stuff up.

  • https://about.me/polleetickle Polleetickle

    Can someone on here just explain what Labour did to ensure how those most deserving were correctly targeted in perpetuity for benefits, welfare – and what happened to Britains finances following Gordon Browns gold sale, ed balls huge national debt and the financial sectors biggest ever boom years?

  • http://www.indeed.com/cmp/Mandrien-Consulting-Group Mandrien Consulting Group

    There’s another side of incapacity provision that almost all individuals do not even realize is a problem. This one is not up for any cuts that i am conscious of, however that is in all probability as a result of it’s already a national scandal and not one thing they may really build worse if they tried.

  • http://ahotbath.co.uk/pyschological-warfare-government-austerity-rehtoric-and-disability/ Pyschological Warfare – government austerity rehtoric and disability | A Hot Bath Won't Cure It

    [...] The fraud rate for disability benefits is LESS THAN 1%. More money is lost through the incompetence of governments and the DWP than is lost through fraud. People are not living a life of luxury at the expense of the ‘hard working people’. The media and the government lie and distort facts.  [...]

  • http://tessagooding.wordpress.com/2012/12/14/a-visitors-perspective-of-south-africa-from-cape-town/ A visitor’s perspective of South Africa from Cape Town | tessa gooding

    [...] the public voting on what campaigns they want them to run. But as David Gillon pointed out on their blog, in a system where the most popular campaign suggestions get prioritised, it can be difficult for [...]

  • Brian

    It is not just the disabled that are demonised by this government and the media but ALL those on any kind of welfare, particularly those on housing benefit Let us be clear about this. Our government’s dislike of all those who are too poor to have a voice, is absolutely typical of too many who are wealthy or on a comfortable dependable income. Unfortunately many 38 Degrees members are among that number me included. This is bad. This government of rich old Etonians has not the faintest idea of what living in a permanent state of need is like, and uses it’s power entirely negatively.

    This is the worst kind of bad management. The rich are rewarded for their work with little or no punishment for failure. The poor and disabled on the other hand are punished even if there is no work they can do, the only reward ( if it can be called a reward ) is the removal of punishment if they find work that pays enough to live on and does not require any benefits. Very few of such people are in that happy state.

  • Cut resistant gloves

    This govt of wealthy old Etonians has not the slightest concept of what residing in a lasting condition of need is like, and uses it’s energy entirely adversely.

  • Alex

    Precisely. All that wealth and privilege is combined with vast, hubristic ambition. They are actively rolling back the clock to the 1930s or even older, tampering with laws and rights that they have no right to tamper with while fostering hatred for the disabled, the poor, anyone who is different – we’re back to Muslims this weekend. It could be gay people tomorrow, or once again back to the disabled.

  • http://godlessfaith.blogspot.com/ Sam Barnett-Cormack

    Difference being that it’s not consider acceptable for the Government to demonise Muslims or gays, but they have no scruples with demonising us.

  • Anonymous

    “I suggest a campaign about …
    You’ve used all your votes and won’t be able to post a new idea, but you can still search and comment on existing ideas.
    There are two ways to get more votes:
    When an admin closes an idea you’ve voted on, you’ll get your votes back from that idea.
    You can remove your votes from an open idea you support.
    To see ideas you have already voted on, select the “My feedback” filter and select “My open ideas”.

    This means that I can never vote again or suggest another campaign. THIS IS NOT DEMOCRATIC!

  • Anonymous

    38 Degrees have been too slow to fight for disabled people. Pat’s Petition closed on 1st December 2012. Also, “The Low Commission will welcome written evidence at any time. In particular, the Low Commission would welcome submissions on the likely impact of cuts and the background policy changes in social welfare law by the end of January 2013, and submissions on the actual impact of cuts and possible ideas for the future of advice by the end of May 2013.” In short, the boat has sailed and 38 Degrees were not on it! The best thing we can do now is support a motion which was unanimously passed by the Liberty AGM on 18th May 2013: THE RULE OF LAW AND ACCOUNTABILITY OF THE STATE. If you are unsure what the ‘Rule of Law’ is, then I recommend that you read Tom Bingham’s book ‘The Rule of Law’ and also read chapter 7 of Unequal Before The Law at: http://www.jures.co.uk/whitepapers/jzqXCQ6W_SJ_Justice%20Gap%20June%202011_Unequal%20before%20the%20law.pdf

    We have a democratic right to challenge bad laws through judicial review, but
    David Cameron has increased the cost and limited the types of cases. We need to
    take a (multi-party) case to judicial review and we need legal aid or some
    financial support to do so. Legal Aid was cut on 1st April and 38 Degrees didn’t
    email members with that campaign. We have no rights if we can’t enforce our rights. Perhaps this financial support can come from 38 Degrees members. Since 38 Degrees won’t allow me to post a new campaign suggestion (or vote on a campaign unless they have emailed it to me) I am left wondering whether this disabled person is being discriminated against or if they only let lawyers suggest campaigns in exchange for free legal work.

  • j griffiths

    I am the parent of an autistic adult and can support all that David says about the increasingly horrible attitudes of the general public towards disability. Disability hate crime is barely penalised or reported (see the appalling case of Stephen Simpson who was stripped, tortured and burned to death from his genitals at his 18th birthday party and whose killers got 3 1/2 years for it) and the failure of people to respond to appalling anti-disability messages such as the case of the Cornish local councillor who suggested forcibly killing disabled children because they cost too much and who was then re-elected. As a result of these prevailing attitudes, the government has been enabled to enact vicious legislation condemning people to poverty and disempowerment. Action is necessary to support those with additional needs and also those who are particularly vulnerable.

  • Jan

    The fact that the petition re. limiting GP visits has got 50,000 signatures in a matter of hours but the one about Atos struggled along with far fewer for weeks speaks volumes about people’s attitudes. They realise that they might get ill at some point in the future, but they’ll never become *one of them* ie. the whining crips. If you don’t sign when you’ve got the opportunity, if you have the power and ability to do something, have action you could take suggested to you and still decide not to take it, you are complicit, it’s that simple. It’s not just the Government and their private sector stooges who have blood on their hands.

  • elleB

    This is one of the worst letters I have ever read and frankly, it makes me feel sick. It is a load of rubbish. How do they foster hatred for the disabled? And what laws and rights are they tampering with? How are they ‘out of touch’? It appears you are reading one the left-wing newspapers and believing everything you read!

    There s nothing wrong with being governed by well educated people, even if they are wealthy.

  • ellieB

    Everybody, even the poor, has a voice. It is called a vote.

  • Clare Sheldon

    Yeah, sure, except there isn’t actually any political party worth voting for any more – Labour are just a bunch of weasels.

  • Jackie

    I am a parent of a young lay with Downs Syndrome and I also care for two adults who have profound needs.There is a certain amount of relief that at least the ILF looks to be back on track at the minute,although no doubt it will be contested.
    I think that when the coalition government got in, we all believed there would be more compassion towards disability due to the fact that Cameron had had a disabled son. How wrong were were. What we all forgot was that he was born with a silver spoon in his mouth. Thus far we have had nothing but cuts.The situation I am in is rapidly becoming untenable due to cuts in day care and respite. Although me daughter seems to do OK with the ILF and Direct Payments for her care. The other two have no voice and the cuts to their services have been dire, with all services halved.What that means to them is having half the social interaction, half the hydro, half the physiotherapy. Why are these important ? because without these their health deteriorates and they end up being a burden on the state.
    The fact that on top of this our respite care has been halved is making the situation untenable and for the sake of minimal support it will end up costing the state thousand of pounds when these young people can no longer be cared for in the community.

  • Gordon Palmer

    I have only just read this blog and I am appalled that this matter has not yet been taken up by 38 Degrees. OK so saving the bees is important as is ending ttip and protecting our human rights. But the way the disabled are been treated by the Tories is of the utmost importance to us. And speaking of human rights. Given the stories I have read on Facebook groups and other places. I firmly believe there is a human rights issue here. But it needs someone with the appropriate knowledge to take it on.
    I got so fed up of reading about the lies the assessors put on their reports. And the way the WFI letters lead those in the SG to believe that they have to attend these interviews or be sanctioned. So I emailed 38Degrees yesterday and got a reply that my email was passed on to the campaign team. It remains to be seen if anything will be done. With the Tories in power for another 5 years things are only going to get worse for those who need help the most. It’s time we stopped complaining to, and simply sympathising with each other (though it is a great comfort to many) and start standing up to the Tory bullies. Whether in the form of (peaceful) protests or legal action