“If you can tweet, you can work”

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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.
  • http://www.facebook.com/profile.php?id=646819435 Hayley Stevens

    I once had my anxiety attacks questioned by my employer because I tweeted later that day. Had to explain, through tears, that twitter acted as a crutch when I was suffering badly. As my doctor told me ‘some people just don’t get it and never will’. It’s scary when those people make decisions for the rest of us. 

  • http://twitter.com/StuffedO Holly Kench

    One of the most frustrating things is when people don’t understand how much we WANT to work…
    Great post.

  • http://twitter.com/RuthMadison82 Ruth Madison

    Great post! Very important for people to realize this.

  • Amanda

    I’m in the USA but this stuff pisses me off. I have been told if I can blog I can work. I’m also in bed 24/7 and my iPod and iPad are my main connection to the rest of society.

  • http://www.facebook.com/people/Lynda-Phillips/691825314 Lynda Phillips

    ******* ********!! Do they seriously think that we’d rather be stuck in our situations, in poverty, stigmatised and even subjected to hate crimes??? They’re ‘avin’ an f’ing laugh! My last full time job was £40,000 net basic PA, often much more… My income; now that I’m severely physically and mentally disabled due to an horrific series of life threatening diseases and illnesses; that I’ve paid for many times over in tax and NI is way below the poverty line… The media beast loves it’s titbits on real benefit scroungers and fraudsters and delights in telling the public that we’re all of the same… As a former journalist it makes me feel physically sick that the government and media are responsible for fuelling this hatred. Many, including myself, have compared what’s happening to Nazi Germany and been boohooed for comparing such things, but the truth of the matter is this is where the Nazis started… To end, I have this to ask the British public, “are you waiting for when they will come for you?”… This will be posted on my own blog… Here’s the link to my blog: http://babybear3333.blogspot.co.uk/2012/05/response-to-post-on-latent-existence.html

  • Atg Oneill39

    IIllness or a disability is not a choice. This government stinks.

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  • Tj

    people have always wanted someone to criticize at the moment it is us the disabled scroungers. it is my children and my parents i feel really sorry for as it must be hard for them to tell people their mum is a lazy benefit scrounger at this point in time!! i dont want them affecting because im like i am, luckily they are all grown up nearly. 

  • http://twitter.com/sanabituranima Sanabitur Anima Mea

    An excellent post.

  • Clarebelz

    This makes me so angrrrrrry!

    As I stated on your facebook page, I have a good degree and I could teach privately at home, but I am unable to commit to even a few hours worth of teaching per week; I could not be consistent in doing so.

    As I was deteriorating, short term memory problems made it almost impossible to teach even though I prepared thoroughly for doing so, and apart from that, it is a physical task where you have to get up and down from your seat, as well as letting people in and out; may not seem much to people, but just getting up and down a few times or using the stairs each day leaves you prone to collapse when you have extreme fatigue. 

    This woman is a disgrace. Along with Cameron who said that “I’ve lost count of the number of people who’ve said: ‘I go to work early
    in the morning and on the way I pass neighbours with their curtains closed,
    lying in because they’ve chosen to live on benefits”, it just encourages disability hate crime.

    As a result of all of this, I no longer go out as much as I used to (when I’m ‘normal ill’ as I call it, whereby I’m tanked up with pain killers, then pay for the two hour break with 3 days when I feel like I’m on the verge of death). I used to make the effort to go to my local, with help from a friend, once a week. However, I started being ‘outed’ as someone on benefits among people that I didn’t know that well, with things said like ‘Its all right for her; she get beer on benefits). Bar staff asking too many personal questions about my current situation. People loudly discussing how many disabled people were scroungers. It has made my anxiety very bad, and I just don’t want to go out any more.

    I’ve used a walking stick for years, so some of them don’t even know if I am in work or not; they just assume that I’m not. I had dropped something behind the seating of a pub a few years back, and I was trying to get it. Someone walked into the bar and said ‘what’s up? Looking for your Giro?’. I obviously corrected him, and said to the contrary that I actually worked for a living. I think that he said that because I look a bit outlandish with my dreds and clothes, but some arty types are like that. Now I use a walking stick its even worse.

    Because of people like this, I’m made to feel as if I’m complete scum. It’s a lovely day, and I would love to go out into the garden. I can’t stand the light even with sunglasses, and I need a completely padded chair, but I could sit on a patio chair and hoe the weeds for a few minutes (before all my muscles give up!), but most of the time, I dare not because I’m scared of being reported.

    Its horrible to be a prisoner in your own home, and you even feel a prisoner if you go out; like you’re in a giant prison camp with guards watching over you. This is what has been allowed to happen to the public perception of disability. It has even affected my friends’ attitude. One said, even when I was able to work, that I should not be allowed any extra money to get to work (by taxi) or for my care because this was unfair to my working colleagues who didn’t get the same allowance; now it’s the case that I shouldn’t get more than someone on JSA, and since I’m at home all day, I should see to my own care. When I used ‘Access to Work’ to pay for transport, I used to get lectures from the taxi drivers about how it was a disgrace that I was allowed to claim for transport fees, and that if disabled people wanted equality, they should only get what everyone else receives and no more. I couldn’t win; in work or out I was vilified.

    I’m so sorry for the long comment, but my world keeps closing in bit by bit. Last night I lost something important in the house, and I cried and got really angry because I could not search for it even for a few minutes, and as a result of trying, I am now yet again paying for it physically. It’s hard to get through each day, and although I’m generally a positive person, each day I feel that I can’t go on, that there’s nothing left. After 17 years of being ill, I haven’t got it in me to fight every 6 months for the benefits that I need, and I guess there are hundreds of thousands like me.

    Ironically, I’m helping someone who is crippled to do just that, to fight. She’s been left with £12 a week to live on after her benefit was removed, and she’s on morphine!! I’m helping her, but I don’t know how I’ll help myself!!

    I just wish that we could all form an organisation that could fight. I know that I’m low today, but I am not going to allow them to win, to break me completely.

    Sorry again!

    • Gemma

      I totally understand where u r coming from. It is human nature to reject the sick and that’s wots happening to us. If only ‘normal’ people could understand how hard it is wen ur in constant pain, unable to b a part of the world properly, living a miserable life and struggling every second of the day. To then hav friends and family start to think of u as a lazy scrounge is sole destroying. I used to b a very active person and worked hard web I was younger but my illness has taken my life away from me and there r many times wen it all gets too much and Im so exhausted I just want to sleep and never wake up but then I remember that there r people who love me

  • http://www.runningsteps.ca/ Sarah Levis

    I’m in Canada, and have been following the welfare benefit reform developments in Britain for quite some time now. What I’ve read has sickened me. The anti-disability rhetoric coming out of Britain is particularly disturbing…often worse than what I hear coming from the US (which has been bad enough over the last little while). I will continue to blog on what people with disabilities in your country are going through and try to raise awareness, because there’s been no coverage of it here.

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