May 2012 - A Latent Existence

DWP still breaking their own rules on Mandatory Work Activity

I suppose it was only a matter of time until one of the various things that I have been campaigning about hit someone closer to home.

My brother left college last year after finishing a BTEC National Diploma in Computing with a good result. Unfortunately jobs in IT are few and far between in this area and so after a few months he claimed Job Seeker’s Allowance while looking for a work. Wishing to continue his education but unwilling to rack up tens of thousands in student loans, he started an Open University course in Computing earlier this year (Which still attracts a course fee of £2,500 per year for part time study) with the intention of finding a part time job to pay his living costs.

My brother has turned up for his appointments at the Job Centre every fortnight except the one that clashed with our grandfather’s funeral. He went on the rather pointless one-day course that he was ordered to attend but that offered him only literacy and maths help far below the level of his qualifications. He has applied for jobs, although perhaps not as many as he could have, and filled in his Job Seeker’s record.

Then a couple of weeks ago during his regular signing-on he was asked if he was willing to undertake work experience. Not being unwilling if it would help his employment opportunities, and also fearful of what the repercussions would be if he refused, he said yes. Soon afterwards he received a text message from the DWP. It informed him that he was to start Mandatory Work Activity and would be contacted soon by a private company that would arrange his placement.

This was quickly followed up by a letter giving more details, reproduced here:

The letter reads:

To continue recieving Jobseeker’s Allowance and/or National Insurance credits, you must take part in Mandatory Work Activity.

ESG HOLDINGS LTD, or one of their partners, will support you whilst on Mandatory Work Activity. They will discuss with you the work placement and the support it will provide to improve your chances of getting and keeping a job.

You must complete any activities that ESG HOLDINGS LTD asks you to do.

You will still need to attend the Jobcentre and meet your benefit conditions, including attending Fortnightly Jobsearch Reviews and any other interviews and being available for and actively seeking employment.

ESG HOLDINGS LTD will let you know when you will start Mandatory Work Activity. You must participate until you are told otherwise.

If you fail to participate in Mandatory Work Activity without a good reason, your Jobseeker’s Allowance could stop for up to 26 weeks. You could also lose your National Insurance credits.

We have passed your details onto ESG HOLDINGS LTD who will be in contact with you shortly.

This letter was followed up by a phone call from ESG HOLDINGS and my brother was told to attend a placement at the British Heart Foundation shop for thirty hours per week over five days per week for four weeks.

However, campaign group Boycott Workfare were told in February that the British Heart Foundation would not take people who were forced to attend work with them:

The British Heart Foundation, contacted by a Boycott Workfare campaigner back in November, were insistent that they “would not actively encourage any placements, regardless of the scheme name, where the person involved is not a willing participant…”

It is in the rules that after six months job seekers are sent to The Work Programme, but that is a different thing altogether to Mandatory Work Activity (MWA) and in any case he has not quite finished six months on JSA. The Work Programme involves learning skills and various activities, applying for work, and some work experience. Mandatory Work Activity is by definition forced on people and only involves work placements. In reality both involve forced work for no pay or face having no Jobseeker’s Allowance for six month, but the government did try to claim that The Work Programme was not compulsory. (They were lying though.) Even if JSA is counted as a wage for the work done it works out at far less than the legal minimum wage, and with MWA the job seeker has no choice in who they work for or what they do. Placements can be far outside of the skillset of the job seeker, or against their moral position, but are still compulsory.

A DWP guidance document released through a Freedom of Information request in January tells us a few relevant facts about the MWA scheme which I will quote in the next few paragraphs.

It has not been explained to my brother WHY he has been sent for MWA. Here’s what the DWP guidance says MWA is for:

15. A JSA claimant potentially suitable for MWA is one identified through the work targeted interview process, supported by use of the Customer Assessment Tool, as lacking ,or failing to demonstrate, the focus and discipline that is necessary to effectively:

seek out and pursue job opportunities

secure and retain employment

16. MWA may be beneficial for a claimant that has recently received a labour market related sanction/disallowance, providing an opportunity for them to develop the skills, disciplines and behaviours sought by employers.

19. If a lack of recent work experience is proving to be a barrier to finding work for an otherwise well-focused claimant, Advisory Teams must seek to address this through appropriate measures eg Work Together; MWA is not an appropriate measure in such cases

None of these conditions would seem to apply. My brother has attended all but one of his interviews and has looked for work. He hasn’t received any sanctions for failure to look for work. He doesn’t entirely lack work experience; he has helped out a lot over the last two years in a large kitchen for a charity that provides a conference centre and guest house, and has received training there. In any case, MWA is not to be used to provide work experience. Then we must address the issue that he was not given any indication that he would be placed on MWA or any way to avoid it:

22. A referral to MWA must never come as a surprise to a claimant. If a claimant’s circumstances suggest that they may be suitable for MWA, the adviser must:

explain to the claimant that they are being considered for referral and the reasons why i.e. to develop skills, disciplines and behaviours that are widely valued by employers and that can help them in seeking employment.

provide an overview of the provision to the claimant

explain to the claimant that the case for referring them will be discussed with the Advisory Team Manager in line with district implementation protocols to support MWA

explain to the claimant that if they are subsequently referred to MWA, their participation will be mandatory

record, as an LMS conversation, that the discussion with the claimant has taken place and the reasons cited for considering an MWA referral

NB The language and tone used when discussing MWA with claimants is crucial. MWA must never be used as a threat or portrayed as a punitive measure.

The news about the MWA was given by text message. However, the guidance states:

26. The referral must be made within an adviser interview (a flexible intervention interview should be used).

27. The adviser undertaking the referral must take the following actions:

Explain to the claimant:

why they are being referred

that the case for referring them has been discussed, and agreed, by the Advisory Team Manager

what the provision entails

how we expect them to benefit from the provision

that any travel and/or care costs they incur will be met by the provider

None of this actually took place. In the absence of any plausible reason for my brother’s referral to MWA and given that the correct procedure does not seem to have been followed in the slightest, I have to conclude that job seekers are being given mandatory work at random in contravention of their own rules, or that staff have some other motive such as targets to send for unpaid work. Perhaps the advisers don’t even know the difference between The Work Programme and Mandatory Work Activity.

Why Take The Flour Back are wrong and I’m leaving the Green Party

A group calling themselves Take The Flour Back are opposed to Genetically Modified wheat. Their plan is to visit Rothamsted Park on the 27th of May 2012 and destroy the GM crops being grown as part of the experiment described here:

“Scientists from Rothamsted Research are conducting a controlled experiment to test wheat, genetically modified to repel greenfly and blackfly, which could help reduce pesticide use and promote sustainable agriculture in the future.”

Scientists from Rothamsted Research recorded this video in an effort to open dialogue with the protesters.

You can read a written message from the scientsts here: Rothamsted Appeal Letter [PDF file]

Misinformation

The protest group make a few assertions in favour of their vandalism:

Rothamsted have planted a new GM wheat trial designed to repel aphids. It contains genes for antibiotic-resistance and an artificial gene ‘most similar to a cow’.

Rothamsted deny that they have used any genetic material from cows. In fact, the odour is produced by a protein called (E)-β-farnesene which is also produced by hundreds of other plants including plants which we consume, such as Hops. Rothamsted state: “To suggest that we have used a ‘cow gene’ and that our wheat is somehow part-cow betrays a misunderstanding which may serve to confuse people or scare them but has no basis in scientific reality.”

There is no market for GM wheat anywhere in the world.

This isn’t true. Plenty of GM products are sold and consumed, although some of that is through abusive behaviour by large US businesses. That is a different problem to address. Perhaps they mean that people are generally opposed to GM food, but whether true or not that should not stop experiments that could have far-reaching benefits. People should be allowed to make their own choice. I fully support the idea that any product sold which contains GM ingredients should be labelled to allow people to choose.

This experiment is tax-payer funded, but Rothamsted hope to sell any patent it generates to an agro-chemical company.

Rothsted completely refute this:

Our work is publically funded, we have pledged that our results will not be patented and will not be
owned by any private company - if our wheat proves to be beneficial we want it to be available to
farmers around the world at minimum cost.

Take The Flour Back continue:

La Via Campesina, the world’s largest organisation of peasant farmers, believe GM is increasing world hunger. They have called for support resisting GM crops, and the control over agriculture that biotech gives to corporations.

I wonder how this organisation can support this statement. I do not believe that GM crops increase world hunger, but I do know that large companies are abusing patents to force the purchase of GM seeds in many cases. This is a problem with those companies and not with GM products.

‘Take the Flour Back’ will be a nice day out in the country, with picnics, music from Seize the Day and a decontamination. It’s for anyone who feels able to publically help remove this threat and those who want to show their support for them.

Wrong. That should read:

Take the Flour Back’ will be a nice day out in the country, with picnics, music from Seize the Day and vandalism and destruction of scientific experiments before the evidence can be gathered by people who fear what they do not understand.

A news story on the Green Party website also added:

The trial is happening in the open air, meaning that when it starts to flower it can cross contaminate other wheat crops and wild grasses. This is a real threat.

However this is false. The wheat used for this experiment is self-pollinating and the flower fertilises itself rather than dispersing pollen through the air to another plant. The seeds are too heavy to disperse in the wind and the plant has no adaptations to facilitate insect pollination. Even so, the researchers have taken precautions against contamination:

The GM plots will be separated from the edge of the trial by 10 meters of barley (or space) plus a 3 metre ‘pollen barrier’ of wheat that helps to contain pollen from the GM plants within the trial site. All these plants are treated as though they are GM and harvested /destroyed at the end of the trial. There will be no cereals grown for 20 metres outside the boundary of the site and no wild relatives of wheat that can cross with our cultivated variety exist in the vicinity.
Couch grass species, distant relatives of wheat will be controlled in a 20 metre wide area around the trial site to avoid any slight possibility of cross-pollination.

The right to protest

I am completely in favour of a right to free speech and the right to protest, even with people that I do not agree with. However, I am horrified at the idea of destroying scientific research. To make good policy we need knowledge, we need evidence. We obtain evidence through research. To destroy this research before we have any results is like setting fire to a library. Risk assessments have been carried out, precautions have been taken, consultations were carried out. Even if those who object did not engage at that time surely if there were a danger then they could attempt to stop things now through legal processes which will make a decision based on evidence. I think the protesters have probably not done so because the evidence is not on their side.

Why I am leaving the Green Party

I have explained why I oppose Take The Flour Back, but I am also resigning my membership of The Green Party over this issue. London Assembly Member and former candidate for London Mayor Jenny Jones tweeted on the 10th of May:

https://twitter.com/GreenJennyJones/status/200465542736396289

This was followed up with a news story on the Green Party website which repeated some of the false statements made by Take The Flour Back and announced that Jenny Jones would attend the protest.

I believe this represents support from the Green Party for vandalism and the destruction of scientific experiments. One of the reasons that I took a long time to join the Green Party after betrayal by the Liberal Democrats in 2010 was the anti-science attitude that I saw with their policies supporting homeopathy and reacting against many things out of fear and contrary to evidence. Indeed, the Green Party knew that this was a problem and recently made an effort to make their policies evidence based. I joined about three months ago when I thought that things had changed but this fiasco over GM experiments has left me feeling that I cannot trust the party. Perhaps I have given the Greens less of a chance than I did the LibDems but after one betrayal I am not waiting around for another.

I no longer feel that I can trust political parties. Manifesto pledges mean nothing. Promises seem to lead to the exact opposite behaviour. Politicians happily lie and mislead the public as to their true intentions. I’ve learnt my lesson. I sent in my resignation to the Green Party a few minutes ago and I will no longer support any political party.

There is a campaign by Sense About Science and a you can sign the petition asking people not to destroy research.

What is a Raspberry Pi?

I have in my hands, at last, a Raspberry Pi. No, not a delicious item of food, but a tiny, cheap computer designed to encourage people to learn how it works and make it do something new.

The Raspberry Pi has been brought into being by the Raspberry Pi Foundation, a charity who put their intentions like this:

We don’t claim to have all the answers. We don’t think that the Raspberry Pi is a fix to all of the world’s computing issues; we do believe that we can be a catalyst. We want to see cheap, accessible, programmable computers everywhere; we actively encourage other companies to clone what we’re doing. We want to break the paradigm where without spending hundreds of pounds on a PC, families can’t use the internet. We want owning a truly personal computer to be normal for children. We think that 2012 is going to be a very exciting year.

The people behind the idea want to address the lack of people studying for computer science degrees and they identified two problems which may cause this. One is that the way the computers (ICT) are taught in school is boring and business focused, teaching office skills and not computer science, and the other is that computers now are far more expensive and complex than those in the 80s, such as the BBC micro or the ZX Spectrum. Those computers, unlike the modern PC or Mac, encouraged tinkering, learning and extending.

I recommend that you watch this report from BBC Click which looks at the problem: Can a £15 computer solve the programming gap? [BBC Click]

To keep costs down, the Raspberry Pi uses an Arm processor - the same as in most mobile phones - and does not have very much memory. It is designed to connect to a TV so that an expensive monitor is not necessary. It uses the free Linux operating system which is also open to being modified by the end user. The intention is that simple programming software will be included with the Pi to enable someone to simply plug it in and start learning to write code. The copy of Linux which is recommended for the Raspberry Pi currently includes Scratch, which allows kids to create and animate “interactive stories, animations, games, music, and art” by dragging and dropping blocks of computer code.

The Raspberry Pi model B sells for approximately £30 once you add VAT and delivery and will be available from RS and from Element 14 / Farnell once they have the stock available. There will eventually be a Model A which will be a few pounds cheaper but will lack a network socket and will have only one USB socket. In addition to the Raspberry Pi itself you will need a memory card (SD card) to hold Linux, a keyboard and mouse with USB connectors, a power supply of the Micro USB sort used by many modern mobile phones, and access to a TV or monitor with a HDMI or a composite video connector. These may already be available but if not will add a few pounds to the cost.

At the moment the Raspberry Pi is mostly selling to hobbyists and enthusiasts rather than into education. That’s OK though; at the moment the software for the Pi requires quite a lot of experimentation and difficult-to-follow steps to make some things work and it isn’t really ready for prime time. Many of those people fortunate enough to get their hands on an early Raspberry Pi are working out the problems and feeding information back to everyone that will use one in the best tradition of open source software. By the time kids start to see these in schools in a few months there will hopefully be a lot more software ready to use without too much knowledge necessary.

Unless you already knew about the Raspberry Pi, you probably can’t have one at the moment. Interest in the Pi has been astonishingly high and I think that several hundred thousand people have placed pre-orders or signed up to reserve one. The initial batch was only ten thousand! I signed up for mine at 1 minute past 6 (am!) on the launch day three months ago and I have only just got one so new orders will take a few months yet.

Coming soon: I plan to write about getting started with the Raspberry Pi, what you need, and how to set it up and do something useful with it.

More Information

Can a £15 computer solve the programming gap? [BBC Click]

Computer programming at school [A Latent Existence]

Raspberry Pi: About Us [Raspberry Pi]

Sue Marsh given wrong drug and pain team refused to change it - agony instead of pain relief

A very distressing incident happened at Addenbrookes hospital in Cambridge today, in Health Minister Andrew Lansley’s own constituency. After major surgery Sue Marsh was given a drug that she is allergic to which caused her even more pain, and stubborn nurses refused to give her any other pain relief.

Sue was left in agony after her operation to remove a large section of her bowel when she was given Fentanyl while under anaesthetic. Sue is allergic to Fentanyl and far from reducing pain it actively increases it. (She has previously written about her horrific 1997 experience with Fentanyl.) She was wearing an allergy warning bracelet and the allergy was also noted on her consent forms. In fact Sue had agreed with staff that she would be given Pethidine which is what she had been given after several previous operations and is one of the few drugs that will work for her. When in spite of all of this Sue was given Fentanyl while under sedation, the pain team refused to give her the Pethidine when she came round and refused to call the on-call anaesthetist to change it - they claimed that no one had used Pethidine for years. Even after Sue was able to prove that she had been given it more recently, and prove the agreement to use it on this occasion and her allergy, she was still refused the pain relief that she needed. Faced with this refusal Sue turned to Twitter for help.

Sue Marsh campaigns for disability rights, the NHS and welfare and was the driving force behind the Spartacus Report into the deceitful Personal Independence Payments consultation. On twitter she has six thousand highly politically-connected followers including MPs, journalists from across the political spectrum, political activists and a vast number of sick and disabled people. When she tweeted messages of such obvious distress it created an immediate uproar. Kaliya Franklin (@Bendygirl) quickly made some phone calls and Sonia Poulton came to the rescue. Sonia - a journalist for the Daily Mail - called the hospital and spoke to the Operational Matron who promised to take action immediately. I am pleased to say that Sue was given Pethidine soon after, although as far as I can tell it was not the PCA (Patient Administered Analgesia) which had been agreed on and may have been a relatively small dose.

It is impossible to know at this stage what went wrong here but I hope there will be an investigation into what happened. Certainly Julian Huppert MP has taken an interest and will no doubt ask the right questions. This situation is an extremely serious one. Giving Sue the wrong drug could easily have killed her, and we must ask how often this might have happened to people who are less visible to the public. That decision by itself is bad enough, but the refusal by nurses to correct the mistake is horrendous. Deliberately leaving a patient in pain after major surgery may be considered to be torture.

While the objection to Pethidine PCA would have been a deliberate decision, and the decision to use Fentanyl was perhaps a mistake, it is harder to see how the pain team could justify ignoring Sue’s continuing pain. We can see from earlier tweets that Sue has already experienced similar problems with nurses in her ward:

https://twitter.com/#!/suey2y/status/201404752494469122

https://twitter.com/#!/suey2y/status/201404973056143360

https://twitter.com/#!/suey2y/status/201406727751610370

Please note; I have edited this blog post after talking to Sue about it and I have removed a section which suggested that budget cuts were responsible for what happened. I believe that cuts are harmful to the NHS and will result in serious problems but I have no proof that they were responsible for this situation.

You can read Sue’s tweets from the hospital below, but be warned that they are extremely upsetting.

Continue reading “Sue Marsh given wrong drug and pain team refused to change it - agony instead of pain relief”

Pain pain pain

Last night was a bad night. I had a little less than three hours of sleep and by 7am my pain levels were high. Not so high as to have me curled up whimpering and shaking as sometimes happens, or enough to make me cry out, but enough to ensure that I definitely couldn’t go back to sleep and found it hard to concentrate on anything else.

It’s my feet that hurt the most today. Specifically, the tops of my feet which are aching horribly, as are my fingers and the backs of my hands. My arms hurt too, with the aching seeming to branch out from my hands and shoulders into the arms. Strangely, my elbows don’t hurt. My legs feel like I’ve been beaten up or possibly run over, which is about normal for me but with some extra cramp and shooting pains in my calf muscles. The cramp occasionally stabs at the underside of my feet too. Now that I’m typing I realise that the muscles in my thumbs hurt quite a lot. My usual constant headache might be in the mix somewhere but it’s been masked by more pressing pain elsewhere. Over the last few minutes a familiar burning pain has overtaken the aching and started to spread through my body. It’s the burning that makes me curl up and wish to die, to scream in pain. I desperately hope that it stops before that point. Back in early 2011 I had the burning all the time and I had to take pregabalin (Lyrica) to control it. I didn’t enjoy either part of that experience.

I have had drugs to try and help, of course. At 7am I had 500mg Naproxen, 1g Paracetamol and 30mg codeine. It made no difference that I can tell. I could take more codeine but the result will be that I can’t think and get really drowsy but lie awake in a nauseous opiate haze without actually sleeping. I have distracted myself through the last hour by re-watching episodes of The IT Crowd but my concentration is slipping now and I’ve turned it off.

I get pain most days although not to this extent. The pain has always been put down to my diagnosis of M.E. with the more recent burning possibly being diabetic neuropathy but while it’s a name for it, it doesn’t actually explain what’s causing the pain. It’s just labelled and then ignored. Maybe if I knew why I was in pain it would be easier to accept. I know lots of other people who have similar experiences so I don’t really know why I’m writing this other than to have a moan. Maybe that’s enough of a reason.

Parking bay badge blues

The following is a guest post by Christine Sumpter. (Yes, she is my mum!)

My husband has a blue badge and a Motability car. He has a badly damaged spine and scar tissue on his nerves. Yes, sometimes he can walk without the aid of his stick, with a pronounced limp and the ever-present danger of stumbling or his leg giving way completely. He is stubborn and often walks more than he should, choosing to ignore the pain. He gets ‘looks’ from other disabled parkers, particularly older people, mainly because he doesn’t look very disabled and he looks like the proverbial ‘plumber with a bad back.’ Actually he is an ex-plumber with a severely damaged back. And how can anyone tell from looking how much pain he is suffering?

There seems to be a common misunderstanding of the nature of mobility problems. Our local supermarket has located the blue badge parking spaces on both sides of a central walkway extending nearly to the far edge of the car park. It seems that they are under the misapprehension that all disabled parkers are wheelchair users and can manage the distance. Disabled people who can walk (after a fashion) also need to be able to open car doors fully and, more importantly, need to park near the building. The supermarket put a metal bollard in the centre of the crossing place from the car park, and it had to be pointed out to them by a friend of mine that her blind (and lame) husband kept falling over it. In icy conditions the path is gritted but those vital areas between the bays are not, neither is snow cleared from them.
There does not seem to be any policing of disabled parking bays so that on rainy days most of the spaces near the building are occupied by anyone who doesn’t want to get wet, leaving the people entitled to parking there to make the long, soggy trek from the other end of the walkway. And the disabled parking bays are used as an unofficial staff car park for the night shift, presumably because they think that disabled people don’t go out after dark.

Iain Duncan Smith: “Disabled staff sit around drinking coffee all day”

The Sunday Express has reported that Iain Duncan Smith claimed disabled staff “sit around drinking coffee all day” and said that former Remploy staff should “get a proper job”. The Express continues:

In a tirade campaigners later branded “unbelievable arrogance”, he stormed: “Is it a kindness to stick people in some factory where they are not doing any work at all? Just making cups of coffee?

“I promise you this is better. Taking this decision was a balance between how much do I want to spend keeping a number of people in Remploy factories not producing stuff versus getting people into proper jobs.”

To be honest, IDS’s hateful words don’t surprise me much. He seems to think that disabled people are lazy, or that their jobs at Remploy are somehow fake because they are subsidised. How he can think this when Remploy produce all sorts of things including DWP computer systems, I don’t know.

If IDS represents the mythical “Compassionate Conservative” then I don’t think he has a very good idea of what compassion actually is. His concepts of how poor, sick or disabled people live and what their motivations are is rooted in the security of a privileged wealthy background and is entirely detached from reality. Most people who receive benefits don’t want to be dependant on them. They would much rather have a job, with their own earned income, free from the stigma and the interference by the state and able to make their own choices. The staff at Remploy are not somehow faking their jobs and lazing around making coffee, they have real jobs producing real products and services.

It’s not as though there are jobs for the taking anyway, even those who are not disabled cannot find work. There are millions of unemployed people who don’t have prejudice against their disability keeping them out of most of the jobs that are available anyway.

Iain Duncan Smith has no excuse for his words. His background may have led to his disablist prejudist views but he has lived long enough and been told often enough to know that his views are wrong. When even the Express can see that what he has said is wrong and offensive, Iain Duncan Smith should resign and apologise.

“If you can tweet, you can work”

Picture 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.

—————————-

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.

Month: May 2012