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.
“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.