“If you can tweet, you can work”

Blogging Against Disablism Day 2012Picture the scene: I am lying in bed on my front, with my head turned to the side. My right arm is flat on the bed, a phone propped up by my hand. The only part of me moving is my thumb, pressing the on screen keyboard. Pain is tearing through my body, what I feel in my arms, my legs and my hands is agonising. I don’t have the strength to lift any part of my body from the bed. And yet, I have one, tiny connection to the world  – I can send messages out through twitter, and I can receive replies, 140 characters at a time. This is my often my only interaction with anyone else at this point. Through twitter, I can talk to friends, take my mind off my pain and discuss something – anything else. When the pain is too much, I’ve got a support group of fellow sick people and we can commiserate about the pain.

Fortunately, I am not this incapacitated all of the time. No, much of the last few weeks I have been so energetic that I have been able lie back on a pile of pillows and type on a full keyboard for as much as a few minutes before the searing pain in my hands sets in. Sometimes, gasp, I can even make it to a different room in the house for a while.

And yet, according to some, my usage of twitter means that I can work. I can’t get out of bed most of the time, but apparently I am a scrounger who is defrauding the benefit system.

In September 2010 Nadine Dorries MP made a request on her blog for people to look out for people tweeting too much and report them to her. She also asked people to report anyone who tweeted a lot while on benefits to the Department of Work and Pensions. She went on to pick on someone who was waiting for surgery for arthritis on both feet for their prolific use of twitter.

It gets worse. There are now rumours that ATOS (The company paid to assess people, who have been known to declare people fit for work just before they die from their illness) will be checking twitter and other social networks for activity that indicates ability to use a computer for any length of time. Because, you know, that makes you fit for work. Now this may just be rumours, but it shows a huge problem with public and government attitude to the sick and disabled.

I want to work, I really do. I own a business that my father and I have built up over the last 17 months into something that has the potential to go somewhere. I started my business as a last resort, since both of us are disabled, to try and provide part time work for myself that could be done when I have the strength to do it, not strictly between 9am and 5pm. I have been trying to build up more web hosting and design work, and I even tried to carry on working from my bed when this relapse started nearly three months ago. Unfortunately I have reached the point where brain fog has killed my concentration, and pain and fatigue won’t let me keep going to long enough to finish any work related tasks.

I can write, but I couldn’t tell you when or how much I could write. I can tweet, but that’s because tweets are short, and (mostly) fit in between bouts of brain fog which stops me completing my thoughts. I can set up a website without leaving my bed, but who is going to hire me to do that when it might happen now or it might take me weeks because of my health? I could be brought a customers computer to remove viruses from, but then not have the strength or concentration to do it for days.

The fact is, I can’t work. I am not employable. If I had ANY chance at all of working, I would be desperately trying to save my business into which we have sunk time and money and worked so hard for the last year and a half. I have hurt myself trying to run my business and have had to give up and apply for ESA because I have no other choice. And yet, because I have a variable, invisible disease, I am likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I probably won’t have a Citizens Advice Bureau to help me because they are being cut.

So I am going to carry on tweeting and blogging. I have precious little other contact with the world and I will lose my friends and my support group if I don’t. Someone looking at my online activity and judging me on it cannot see how long each blog post took me, or the pain that I have to endure to even communicate with others online. The portrayal by government and by media of all sick and disabled people as scroungers and cheats is disgusting and yet good people that should know better are taken in by it. Those who think I should just lie here and be miserable while I wait to be denied benefits are the problem, not me.

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I wrote this blog post in February 2011 and I have posted it again today in support of Blogging Against Disablism Day 2012, partly because I’m not up to writing a full blog post right now. I am pleased to say that since then I have started to receive ESA and DLA, although I suspect that is more down to having a very stressful journey to my Work Capability Assessment which ensured that I collapsed in the Atos building than to anything else.

The negative attitudes to disabled people, though, have got worse. While horrific stories about the incredibly sick people who have been declared fit for work have caught some attention, sick and disabled people continue to be called scroungers in the press just for trying to live their lives. A recent report from the University of Glasgow highlights how bad things are getting.

Bad News for Disabled People: How the newspapers are reporting disability [PDF]

I’ll hand over to Emma Round for her commentary on her report:

There has been a significant increase in the reporting of disability with 713 articles in 2004‐5 compared to 1015 in 2010‐11. There is now increased politicisation of media coverage of disability in 2010‐11 compared to 2004‐5.

There has been a reduction in the proportion of articles which describe disabled people in sympathetic and deserving terms. People with mental health conditions and other ‘hidden’ impairments were more likely to be presented as ‘undeserving’.

Articles focusing on disability benefit and fraud increased from 2.8% in 2005/5 to 6.1% in 2010/11.

When the focus groups werea sked to describe a typical story in the papers on disability benefit fraud was the most popular theme mentioned. The groups all claimed that levels of fraud were much higher than they are, some suggesting that up to 70% of claimants were fraudulent. Participants justified these claims by reference to articles they had read in newspapers.

There has been an rise in the number of articles documenting the claimed ‘burden’ that disabled people are alleged to place on the economy with some articles even blaming the recession itself on incapacity benefit claimants.
A particularly awful example of these negative attitudes is seen in professional loudmouth and troll Katie Hopkins. She frequently appears on Radio 5 Live discussions advocating that all sick and disabled people should be denied support and abandoned to fend for themselves. Even worse are some of her tweets:
“If people’s disability benefit was handed out from the top rung of a ladder I reckon most would climb the ladder to get it.”
We can’t let people like this get away with spreading such nonsense and hate. We must talk about disability, about the reality of illness, and educate people on what these things really mean. Sick and disabled people are still people, still part of society, still bring joy to friends and family, and often still work. Indeed, if they are not included, then that is the fault of the people around them.

Atos: Why are we campaigning?

The Stream – a programme on Al Jazeera English – are covering the protests against Atos in their show this evening at 19:30 GMT. They asked me what I thought should be included.

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These are the key points that I think are the problem.

  1. That Atos staff and Lima system do not adequately assess whether patients fit the descriptors as set by government, instead asking their own questions to fit their tick boxes then trying to make the answers fit the legislation set out by government. (Found at http://www.legislation.gov.uk/uksi/2011/228/made)
  2. That Atos as a private contractor is not accountable in the same was as gov, e.g. FOI requests
  3. That the whole concept of assessing patients as fit for work or not is flawed, this cannot be tested in a 45 minute session as Atos does not draw on medical history, variation from day to day, etc.
  4. Atos judge a person’s ability to walk, stand, concentrate, communicate etc on what they look like in one 45 minute session which can be very different from other times.
  5. In making the decision Atos ignore impact of work on state of health and they don’t account for the health impact of doing many things in sequence to work, just ability to do any one of those things in isolation!
  6. Asking trick questions to catch people out.
  7. Having “Medical Centres” that are not fully accessible, including centres with no lifts, no disabled car parking bays, or sometimes no parking at all, and unsuitable chairs in their waiting rooms.
  8. Frequently keeping patients waiting hours for their appointment, and observing them in the waiting room for behaviour that might mark them as liars.
  9. Having assessments carried out by staff other than fully qualified doctors.

I would particularly like to know why Atos do not ask the questions as set out by legislation, instead asking their own random questions, including trick questions to catch people out. For example, “Do you watch Eastenders?” if answered with yes is taken as proof of ability to set in one place for an hour, and to concentrate fully. “Do you have any pets?” is used to determine that the patient is capable of feeding, cleaning and caring for the pet and therefore themselves. “How did you get here?” is another trick, since it can be taken as proof of being fully able to use public transport, when in fact the journey might have caused considerable deterioration in health for the patient but was undertaken out of fear of losing benefits.

This list is just what I can think of in a few minutes, I am sure there are other problems too.

 

Atos moves to shut down criticism

Atos are the French IT outsourcing company whose Atos Healthcare arm have been running Work Capability Assessment for the Department of Work and Pensions.

Lots of people are unhappy about Employment Support Allowance, about the assessments, and about the way that Atos run them. There have been protests outside Atos offices using slogans such as “ATOS kills” to express their feelings. Lots of people have explained why they are unhappy with Atos in blogs, on social networks, and in support forums.

It seems that Atos don’t like this. They have started issuing legal threats, and they have succeeded in shutting down some of their opposition. Various websites and forums have spoken out against ATOS and collected personal stories about them. After ATOS first received a take down request in May 2011. Atos lawyers recently threatened legal action against Paul Smith who runs the “Atos Register of Shame” website, accusing him of libel and claiming that “This is a direct attack on Atos and the name of the website in and of itself is implying that Atos carries on its business in a manner which is shameful.” You can see a take-down letter from Atos here.  http://issuu.com/atosvictims/docs/legal_letter_from_atos?mode=a_p

They have also shut down a support forum for carers, CarerWatch, by contacting their server host directly and having it taken down. This has removed a vital support network from many carers, presumably because of private discussions about Atos in members only parts of the forum. Apparently people are not even allowed to talk about Atos now, despite needing to do so to support each other when going through tests administered by Atos.

Following this action against them, CarerWatch have published their reply to Atos, which I reproduce here. (I hope they won’t mind.)

21st Aug 2011

FAO  – ATOS Legal Department

CarerWatch is an internet forum for sick and disabled people and their unpaid family carers. This is a private forum and only members are allowed to make/read posts.

We understand from the organisation that hosts our forum that they received a letter from your solicitors threatening to sue us for libel. The provider immediately closed our site down.

We have many members who are very fragile and the sudden disappearance of a support group has caused a lot of distress and fear. Some are ringing us in tears. We cannot get in contact with all of them though as we have lost their contact details through the closure.

All this distress could have been avoided if you had had the courtesy to contact us first and tell us what had been posted on our site that you considered libellous. Obviously if any post was possibly libellous we would have removed it and all this distress could have been avoided.

We imagine this distress is unintended and hope you will work with us in looking at the problem and finding a solution.

Please note that this letter, and any reply received from yourselves, will be posted on our website. It is the only means left to us to reach some members and keep them updated.

It is vital we have our forum up and running again to reach those that are isolated.

Frances

On behalf of CarerWatch members

 

Obviously, I don’t want my website taken down. I have been careful to state only known facts here. These are the facts that I know.

  • Atos Healthcare carries out Work Capability Assessments for the DWP.
  • The contract is worth approximately £100 million per year.
  • There has been a sharp rise in people found fit for work
  • There has been a sharp rise in people appealing that decision
  • 40% of those that appeal, win, rising to 70% with legal representation.
  • Although the decision over “fit to work” lies with the DWP,a government review found that the DWP are institutionally incapable of overriding the Atos Health Care Professionals. The Atos recommendation is, in effect, the decision.
  • Atos employ Health Care Professionals to carry out the assessments. HCPs are a mix of doctors, physiotherapists and nurses. Only people with certain problems will definitely see doctors.
  • Atos use their own Lima computer system to record the patient’s answers. Lima has been widely criticised.
  • The HCP fills in Lima by choosing keywords and statements from a list and then justifying them.
  • An Atos recruiter said “We don’t call them patients . . . We call them claimants.”
  • Twelve Atos doctors are under investigation by the GMC over allegations of improper conduct.
  • Two Atos employees are under investigation after referring to patients as “parasites” and “down and outs”.
In the end, although there is much to criticise with the way that Atos carry out ESA WCAs, they may really only be doing what the government expects of them. The descriptors that are used to make the decision of whether a person is fit for work or not are set out in the by the government. (See The Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011) I personally question whether Atos accurately records if a patient fits the descriptors or not, and their ability to do so given the way that Lima Works or the staff that are used. Even if they do make an accurate record in line with the government’s descriptors, it is questionable whether the descriptors are an accurate description of being fit for work or not. Even then, it seems that decision makers at the DWP are “institutionally incapable” of taking into account all of the relevant information for the case as they are supposed to, instead simply rubber stamping the recommendation made by Atos. It would seem that the appeals tribunals are making a fairer judgement on this issue than Atos or the DWP.

Compare and contrast

This morning I have come across two contrasting news stories.

The first has been reported across all the news media, but I will link to the BBC story.

Bizarre benefits fraud excuses revealed by government

“Ministers have tried to highlight the impact of benefit fraud by publishing some of the more unusual excuses used by people found guilty of cheating.”

The second is in the Guardian’s Comment Is Free blog.

Cancer has shown me the injustice of disability cuts

“My diagnosis means I have experience of the terrible impact of welfare cuts. I will use my time left to shame those in power.”

The first story above reports on the most absurd excuses made for benefit fraud after the government have made them public today. The release of anecdotal evidence of fraud by government ministers is shocking spin. Of course the ridiculous nature of these excuses makes good publicity for the government and has been quickly picked up across all the news media. It comes on the back of minister for the disabled Maria Miller announcing on live television news that more people receive benefits for drug and alcohol addiction than for blindness (They don’t.) and employment minister Chris Grayling stating that 75% of people claiming ESA were fit to work. (They weren’t.) These are just some of many inaccurate or over-simplified releases of information by the government.

The current government, backed up by the tabloids, has a clear agenda to denounce the sick as scroungers so that their funding can be reduced or even cut off. It is a lie that is all too easily swallowed by the public. Reports of benefit fraudsters in newspapers makes good stories that cause the necessary amount of outrage in their readers to sell more newspapers. Unfortunately they grossly misrepresent the amount of fraud that actually goes on and distort the views of the people. I have two points to make here really; the amount of fraud is FAR lower than most people think, anecdotal evidence or not, and that people judge others far too easily and decide that people are committing fraud based on things that they see when they have NO idea of the actual circumstances. I am saving my arguments on this for another article, but I have already written about this in my previous article People on benefits? They’re all scroungers aren’t they? and mentioned it numerous times on this blog. I have also mentioned the assumptions that people make about my walking stick in Embarrassed to be me where I wrote about how people question why I need a stick or give verbal abuse because they think the stick is simply a badge to gain sympathy and benefits. Those people think that I am a fraud, when I can barely walk sometimes. Basically, people are horrible and make all sorts of negative assumptions about other people with no basis in reality.

The second story above gives a glimpse at the reality of trying to get benefits when they are actually needed. Although his gripe about DLA not being backdated to diagnosis or ending work, that isn’t anything new or particularly shocking but it does show that the benefits claim process is already quite harsh enough. Again, I have written about my own problems with claiming benefits on this blog, particularly in The benefit claims ordeal. Claiming benefits is hard. Very hard. The application process is hell. The forms are long and very difficult to fill in. It is nearly impossible to highlight the problems that an illness or disability can cause without getting a professional to fill in the form. The Work Capability Assessment is heavily weighted against the claimant and deeply flawed. While 40% of cases that are found fit for work are eventually overturned at appeal, many people give up before the appeal and for those that don’t the process is long and torturous. People even die from their illness before winning their appeal.

Even when successfully claiming benefits for illness or disability, living on them is no easy task. In the story mentioned above, a charity has to provide much of the care and resources needed by the writer of the article, but their funding has been cut too. When living on benefits management of the household accounts has to be perfect or people soon find themselves in bank charges hell. Shopping has to done on an incredibly tight budget and principles have to be compromised in order to get things that are needed. Lisa Ansell wrote about this in her article I can’t get this out of my head. Cooking  can often take the form of desperation stew – see Poverty Cooking for that recipe. Living on benefits means never quite having enough to live on and to pay all the bills. Parents on benefits often go hungry so that their children can eat.

Once again I have to say that the government, the tabloids and the general public disgust me. Current thinking is not very far from repeating history. It has to change.