People who read my rant about The Labour Party last week will be surprised to know that yesterday I attended the Labour People’s Policy Forum in Birmingham and put questions to Labour MPs. I won’t be voting Labour any time soon but for all of the past actions and the betrayal of Labour, they are likely to be in power in 2015 and so I jumped at the chance to influence their next manifesto.
I put questions to Caroline Flint, Maria Eagle and Mary Creagh about income security and benefits. I wasn’t particularly thrilled by the answers but I was pleased when Maria Eagle told me that demonising disabled people was the worst thing that the government had done. I also asked them if they would ever consider basic income but the answer was politician-speak for “no”. (It took a few more words than that.)
In another forum Emma Round managed to get a round of applause for suggesting that Labour should apologise for ESA, the work capability assessment and Atos.
The main event of the day was a Q&A session with Ed Miliband. The audience was made up almost entirely of people who were not members of Labour, which I think was a brave decision especially since the first few questions were very angry. It opened with a demand that Labour challenge the Welfare Reform Act, calling it an insult to a developed country and an assault on its people. The second speaker gave a call to protect the NHS, saying “I work in the NHS, I believe in the NHS but next week I won’t BE in the NHS, I’ll work in public health. Come next week everything that we do and across the NHS is going to go out to tender.” These sentiments got applause and agreement from the audience. Questions followed about education, jobs, equality and much more.
Eventually I got to ask the question which had brought me there through the snow and despite the two hours of awful driving conditions and the resulting cost to my health. I asked Ed Miliband to scrap Personal Independence Payments and keep Disability Living Allowance. I’m afraid the answer was as vague and meaningless as I expected, but I am glad that I got to put the question to him in a public forum.
My question to Ed Miliband
Watch the whole Q&A session with Ed Miliband
The show starts about 44 minutes through the video.
Mainstream media has shown very little interest in covering the coming changes to benefits and the impact that this will have. There is an occasional segment on TV news and a few more newspaper articles but even after two years of campaigning few people realise what is actually happening. The common reaction is disbelief and accusations of scaremongering and exaggeration.
My idea is to create an hour long documentary film using all the professional tricks to make it compelling and informative so that it conveys the full impact of the changes hitting people who live on benefits, whether unemployed, disabled or low-income. It would use personal stories, graphics, commentary, interviews and music to tell the story. The film does not have to convey a political message, only the reality of the changes. Any positive changes that can be found should be included too. I believe that even if made as unbiased as possible the film will be devastating in its message.
To get mainstream appeal the film could be narrated by and feature interviews with celebrities, with well-known paralympians potentially being the best choice but others too.
While a spot on television would be the ideal, these days a film on YouTube can get millions of views – potentially more than would see on TV. An online campaign using very short clips and hashtags could attract viewers. To raise the chances of it being seen on TV a ten minute version could be made using materials from the full version and sent to TV stations everywhere.
I’ve noted some of the steps that I think will be required. They’re not necessarily in any particular order.
Find a suitable name and some introductory branding
Create a website for the film
Crowdsource a list of all benefit cuts, eligibility reductions, care and service cuts and the impact of all this.
Start an awareness campaign on social media to get people involved.
Ask people to submit short clips through Vine and YouTube telling their stories and what they expect to happen. Clips can be recorded with smartphones or webcams. Gather these clips under a hashtag on twitter.
Raise funds through donations for travelling to record interviews.
Interested parties meet to discuss content. Further meetings where appropriate in later steps.
Record interviews with celebs.
Follow up personal stories for better recordings.
Create graphics and animations to explain the changes.
Edit together a draft version of the film.
Record narration of the changes.
Create transcripts and subtitles.
Meet up physically and make a final version of the film.
This is all very much at the ideas stage, please comment with your views, suggestions, offers of help etc. Lets make this happen!
When PIP starts to replace Disability Living Allowance next year anyone who can walk just twenty metres will not qualify for help with mobility. Twenty metres is less than the distance most of the disabled parking bays at my local Tesco are from the door. It’s really not much. Hundreds of thousands of people will no longer get a mobility allowance and as a result will no longer be eligible to lease a Motability car. One day it might be you that needs this.
The government has also left out the phrase “safely, reliably, repeatedly and in a timely manner” from the PIP regulations. This means that if a person can do something just once, or can push through pain to do it, they might not get help and can’t even challenge it at tribunal.
These are just two of the largest problems. Please write to your MP and ask them to fix this urgently. I can’t stress enough how urgent this is. You can contact your MP at Write To Them
Please also sign the (Stop the) War On Welfare petition which is calling for government to do a cumulative impact assessment on welfare reform. A great many changes are being made all at once and yet the government have not stopped to consider how they will affect people when taken all together.
This is the message that I sent to my MP, you can use mine as a starting point for your own if you are stuck. Remember that MPs pay more attention to unique messages.
I am writing to you about the new Personal Independence Payments (PIP) which will soon replace DLA. It has emerged following the publication of the PIP regulations last week that there are many problems with the regulations, two of which are extremely serious.
Under PIP a person who can walk just 20 metres will not be eligible for the mobility component of PIP. That is an astonishingly short distance. Even the closer disabled parking bays at my local Tesco are twenty metres from the entrance. This decision will deny mobility allowance to hundreds of thousands of people who rely on it, and an estimated 100,000 people will lose their Motability cars in the first year alone as a result.
I also note with alarm that the phrase “safely, reliably, repeatedly and in a timely manner” has not been included in the regulations. This phrasing is extremely important, since a person may be able to do something once but then not again for hours – effectively meaning that the activity cannot be done, but PIP will take no account of that.
Government ministers claim that the vulnerable will be protected. I hope that you can see why I am so concerned about PIP and how this will leave people trapped in their homes without transport and denied support for even the bare minimum of activities that they must perform. Please can you give me your assurance that these regulations will be amended so that disabled people can continue with their lives.
Yesterday the government released the final regulations for Personal Independence Payments. I haven’t absorbed enough detail to do a full blog post on this yet but these are some useful links related to it.
Before we start I would like to point out that I am not a historian and I am not a sociologist and as such I have done my best to present the information here as I understand it. With that out of the way, I’ll start with an overview of how disabled people were treated in Germany during WWII.
The Aktion T4 programme ran in Germany from 1939 to 1945. In the 1920s Alfred Hoche and Karl Binding, part of an extreme eugenics movement, advocated killing those who were judged to have “life unworthy of life.” In the 1930s there were huge cuts to state institutions causing overcrowding and Nazi propaganda emphasised the cost of caring for mentally ill and disabled people. In 1939 parents of disabled child Gerhard Kretschmar wrote to Hitler to ask him to permit their child to be killed. Hitler agreed and immediately set up a committee whose job was to organise more such murders – Aktion T4. When the war started parents were told that their mentally ill and physically disabled children were being sent to special treatments centres. In fact they were murdered without the knowledge of the parents. The programme was soon extended to adults, starting in Poland then in Germany. Throughout the programme Hitler knew that there would be huge opposition to such killing and so he never put his orders in writing. The one exception was a secret letter written to authorise the formation of the Aktion T4 programme, mainly because his justice minister would not cooperate without one. The programme operated in secrecy until it was too late for most people. Under the programme at least 200,000 disabled people were murdered over six years, either through lethal medication, starvation or gas chambers.
Now we jump forward to Britain today. The events I describe in the paragraph above are unthinkable. No government minister, no tabloid newspaper, no man in the street would advocate such things, right?
That’s not quite true though. Most of the pieces are in place. We have propaganda pushing the idea that sick and disabled people are scroungers, workshy, lazy. This propaganda is coming from government ministers, their special advisers, and tabloids like the Daily Express, The Sun, the Daily Mail. Even broadsheets like the Times and the Telegraph have contributed. Such propaganda has even been raised by MPs in the Work and Pensions Select Committee and ministers told to stop. The propaganda is working too, with hate crimes against disabled people up in vast numbers.
We have many people fighting to legalise assisted suicide, inadvertently promoting the idea that life for some people is not worth living. Sure, we’re only asking for voluntary euthanasia, but what other factors might be in play? Pressure to stop being a burden, financial problems, cuts to care all contribute to a desire for death. If euthanasia becomes legal what is to stop people from being pushed to kill themselves? It may be overt or it may be through suggestion and through making their lives hell. (This is more my fear of how it could go wrong than any judgement on my part for or against euthanasia.)
We have cuts to local authority care budgets, starting in Worcestershire, that mean anyone whose care costs more than sending them to an institution will lose some care. The politicians argue that it’s a choice because people can choose to move to a care home or to cut some of their care provision. But what to cut? Eating? Washing? Dressing? Using a toilet? We have already seen people lose in court after fighting to not have to wear a nappy. Adults are expected to soil themselves rather than get help to use a toilet. We have also seen the loss of the independent living fund. The net result is loss of care or institutionalising people. Most care homes are run by private companies and neglect does not seem uncommon. I think more abuse and neglect is likely especially when companies are cutting costs because they have underquoted better homes.
We have sick and disabled people being judged as fit to work and told to claim job seeker’s allowance and look for work, and we have even more seriously sick and disabled people being placed in the Work Related Activity Group. Both groups are subject to The Work Programme where they are expected to undertake unpaid work experience for large companies, and government plans are to make such work placements of unlimited duration. Work makes you free.
Under these plans anyone who is seen to not be cooperating with The Work Programme and other work related activities will see their benefit income slashed. Those on Job Seeker’s Allowance can have their entire allowance removed entirely for weeks, even six months. Those on Employment Support Allowance (e.g. too sick to work) will see three quarters of their allowance removed. Of course anyone who has been judged as fit to work or has been placed in the WRAG is expected to be capable of going on work placements even if their assessment was wrong and they are waiting a year for an appeal, and even if people are seriously harmed by trying to work. The result is that those who don’t destroy themselves trying to find jobs that don’t exist or going to endless work placements will instead not be able to afford food, clothes, fuel bills, rent and more. Many will be able to use food banks but some will not be physically able to get to them and food banks rely on charity from other people who are struggling too.
Is it such a large step for disabled people to be dying? No. It’s already happening. Reports in April claimed that 1,100 people had already died after being placed in the work related activity group. That’s more than thirty people a week. This is what Chris Grayling calls “Tough love.”
Some government ministers make policy decisions without thinking about the consequences of what will happen in practice. Others are fully aware of what will happen and just don’t care. Either way, they are often covered by claiming that their policy in itself does not harm people, even though the flaws with implementation allow people to fall through the net and come to harm. Government ignore evidence. They dismiss statistics, they blame the previous government, they claim that processes are being sorted out now, they claim that any harm is the fault of the sick or disabled or unemployed individual. The Government are hiding behind Atos and A4e who are “just carrying out orders” but they way they carry out those orders makes things even worse. Government ministers have the same attitude as many other people in power – they can say “make it happen” and the minions do the dirty work.
In 1930s Germany the government themselves ordered the rounding up and the killing of disabled people. In modern-day Britain the government can claim that it is not their fault, even that it should not happen, but private companies and the chasm of bureaucracy between various government departments are what kill people. Starvation, homelessness and neglect are what will kill people. The implementation is different and the scale is different but the attitude and the outcome are the same.
The government are carrying out a consultation about Personal Independence Payments, known as PIP, which will replace DLA from next year. The consultation is our chance to tell the government what is wrong with PIP, and it could determine who qualifies for help and who does not. We Are Spartacus have come up with a survey which will help them write a group response to the consultation. Please help them by taking a few minutes to answer their survey. The survey assumes that you have seen the draft PIP descriptors, so if you have not please head to the We Are Spartacus website and have a look through the Unofficial Guide to PIP Consultation.
So that’s it.
Tonight Lord Best forwarded an amendment to the WRB, asking that the government did detailed research on the impacts of the bill so that if it does – as many fear – cause more harm than good it can be dealt with quickly.
Lot’s of Lords spoke in support but eventually Lord Freud convinced the Peer that his amendment was not necessary and Lord Best withdrew. Now there will be no more ping-pong between the Lords and the Commons. The bill will become law. It just has to get Royal Assent, and that is a given.
It’s so sad to think that all the amendments put forward to help those who are vulnerable have systematically been denied by a blinkered government waving ‘finacial priviliage’ at any hint of Lords opposition.
Is this the end? No.
The big fight is just beginning.
Lawyers and Human Rights specialists are gearing up to fight it as are we. Remember the Poll Tax made law but was eventually defeated. We can work towards more protests and direct actions in the coming year.
The PIP consultation is currently ongoing so we have a chance to mitigate some of the damage it might cause. Go to wearespartacus.org.uk and you will find easy read documents, help and a sheet you just have to fill in to send off to the DWP so your voice is heard. There is even a forum you can join to get help and meet others like you. I’m making the most of it 😉
In a year and a bit we’ll have another general election and we can show the government exactly what we think of them. We’ll also have had our chance to get our stories out nationally by then.
It’s important we try to make this a major area for Labour and other parties to focus on so they don’t forget the WRB should they come back into power. We can keep up the pressure there.
And those are just the first things off the top of my head.
Let’s no get too disheartened about this, there is still plenty more we can do.
Since making my income public one thing that has been bothering me is that while my wife and I now receive enough money to live on and DLA to provide for the extra costs of my care and mobility, a vast number of my friends do not. And I feel sort of guilty about that. I know that I shouldn’t, I am getting the proper benefits for my circumstances, but I feel horrible that other people – many with greater need than me – don’t get the help that they are supposed to get.
I went through a Work Capability Assessment with Atos and I was placed in the support group. I know that I am sick enough to merit ESA and DLA but it was always in doubt whether Atos would recognise that. I can’t help wondering what would have happened if my journey to the assessment centre hadn’t been so awful. (You can read about that travesty on a previous blog post.) If I hadn’t arrived shaken, stressed and exhausted perhaps my assessment would have gone quite differently – Atos have been criticised for ignoring variable health problems and could easily have judged me differently if I had appeared well that day.
Perhaps it is chance that I ended up in the Support Group for ESA rather than the Work Related Activity Group or even found fit for work. But then my DLA was awarded on the basis of the Work Capability Assessment too, even though that isn’t supposed to happen until PIP is introduced. So is that two benefits received by pure chance? Being awarded ESA helped me to get DLA and getting DLA has increased the amount that I get from ESA, and both of those ensure that I get housing benefit too. At some point I may get carers allowance although that might lower the amount that I get from ESA.
The point is, I now have enough to live on without being in poverty and always struggling to pay the bills. Many other people are not so lucky. What I really want is for access to these benefits to be available to all the other people that need it. I have so many friends who haven’t got the benefits that they so desperately need. Friends who can’t walk, or can’t get out of bed, or can’t cook for themselves. Friends who have been through the assessments by Atos and refused on absurd grounds. Friends who are in hospital near death and don’t get benefits. I was really terrified that I wasn’t going to get my ESA, and the form filling for benefits and the assessment process itself made me more stressed which led to me being more physically ill too.
Even when people have managed to get all the benefits to which they are entitled it isn’t always enough. I need relatively few adjustments to live. A wheelchair, a shower seat. Some people need hoists and lifting equipment and wet rooms and stairlifts and bigger rooms to fit it all in… and the list goes on. Of course some of that can be paid for in other ways such as from council funds or (until now) the Independent Living Fund but many people end up sorting out their own adaptions. I talked to my GP about getting an NHS wheelchair yesterday and she suggested that it would be quicker and easier to buy one for myself. (Not that I can’t try to get an NHS one.) That happens a lot with costlier items too.
Clearly the benefits system isn’t great at the moment. It’s obvious that it needs reform to solve these problems. But – and this is an important but – the Welfare Reform Bill doesn’t solve these problems. It makes them far worse. It abolishes multiple sources of funding, it cuts the DLA / PIP budget by 20% and it restricts who can get help and who will receive PIP. Government ministers have told us that those most in need will get more help. What they are less keen to tell everyone is that the extra help for those most in need is being snatched away from those who are only quite in need. If you need help but not loads of help, that’s tough. Because the government says you’re not going to get any help at all.