Tuesday 22 February 2011

Just Because You're Paranoid Doesn't Mean They're Not Out To Get You.

The media rhetoric around, and the threatened government cuts to, disability benefits are filling people with fear. They are contributing to deep suspicion and even aggression from the general public towards disabled people, and lots of us are feeling more than a little petrified.

From Nadine Dorries' Shop a Twit campaign, to virtually everything put out by the Daily Mail, many disabled people are becoming scared to go out, to have occasional treats, to try something normally outside of their limits, such as walking a few steps, or to put their name to anything they post on the internet at all, in case someone should see them, report them for benefit fraud, and accuse them of 'faking it'.

Of those who have continued to post on twitter, despite previous threats, many feel more limited about what they can say, lest they are judged to be faking, scrounging, or wasting taxpayers' money. Still more are finding they feel they have to justify everything they say, just in case somebody is watching. And programmes like the BBC's Saints and Scroungers do little to help, either people's attitudes, or the overriding fear and paranoia experienced by disabled benefit claimaints.

So I was saddened, but not surprised, to see one person's response to this build-up of fear.
I started to worry that my heavy use of twitter could be used against me in this process. I have already explained how and why I can use twitter without that meaning that I am fit to work, but I also worried that my tweets could easily be taken out of context. For example, a tweet about undertaking an activity of some sort could be used as proof that I can do that all the time. What an investigator would not see is how good or bad a day I was having, how much I had to prepare for and work around the activity, or how much pain and exhaustion that activity would cause for days afterwards.

So Steven Sumpter, aka latent existence, took, "the drastic step of deleting all 12,272 of my tweets". All of them. And why? Fear. Fear they would be used against him. Fear that they would portray an image of him actually being fine. Now, I follow him on twitter, and it's not like he's endlessly talking of weekends away skiing and trekking up mountains, and decided he'd better suddenly get rid of the evidence. This is the twitter account of someone who is clearly not well enough to work. This is someone who talks about a good day being when they open their curtains 'without fleeing in pain from the light'.

This someone who nobody could accuse of faking it. Anyone with a chronic illness can recognise straight away that these aren't a series of made-up tweets by someone imagining what it might be like to be ill, and even so he felt so threatened by the current atmosphere of suspicion and attack, that deleting over 12,000 tweets felt like the only way forward.

But he's not the only one scared. It's not a paranoid or psychotic illness which is making him have these suspicions, some of the most mentally healthy people I know concur with him. And I want our progressive, equal society to take a look at itself, and wonder just how progressive and equal it is.

(cross-posted at incurable hippie blog).


  1. I had a phone call today purporting to be from the DWP. Did I know that the law is changing in April and people (like me) on lower mobility DLA could be entitled to the highest rate? When I said I'd like to know more the caller went straight away into a speil about it was being recorded for training purposes etc. so I cut them off right then and told them to put it in writing. They didn't seem to have my address, oddly enough. Wonder what they're up to now? Since when do the DWP cold-call people making what sounded like a sales pitch?

  2. Oetrified is an understatement. It is like we have been put into prison for a crime we didnt commit - Are we allowed no friends (I mean nline friends as I cannot get out much to meet in real life ones)

    I am sick of these govt MILLIONAIRES who have accountants to make sure they pay hardly any tax on their massive wealth, telling me that the little I claim is far too much and how I should get out of their way and make room for REAL people who pay lots of tax and bring money to the govt to squander and put into places I dont even agree with.

    If we are ina defecit WHY do we keep giving money to banks and companies who already have tons of money?

    I cant cope with life as it is and the stress they have put on me for daring to spend ten minutes at my computer is ridiculous, it is bullying, and it is just so nasty to pick on the weakest people who cannto fight back.

    I feel empty and drained, I dont have the energy to fight them. I just cannot do this. And yet on they go with their attacks on disabled people like 99.9% are fakers. Al those MRIs I have had - Must be all wrong, my neuro - He knows less than ATOS apparently, my nurses and doctors all of them know nothing. - In the eyes of the govt, all of them are liars and I am a faker.

    Cant take this much more, just cant take the stess of it, it is so unfair that so many of these top MPs are millionaires (18 front benchers are all old etonians) They have no idea what it is like being poor. They were born rich and will always be rich! Their Big Society is all abotu the rich keeping riches whilst the poor work to death to keep the rich people rich - Isnt that how it was back in the 17-1800s - That is where we are heading back to!

    Before the election he PROMISED he would be looking after the sick and the young and old - Now - All he does is attack them call them scum and fakers and take from them to feed the rich of society.

    We dont stand a chance - I dont stand a chance ad I dont have the will to fight these bullies. You win Cameron - I cant fight you - You and your 40 million pound bank balance have beaten me with my bank balance of les than 1k - I hope you are proud of yourself! All I am is dust in the wind........

  3. I went into town yesterday. I'm only managing to get out of the house once or at most twice a week at the moment and it's been that way since the flare up started in November. I shop from my scooter in a supermarket there so myself and the Behinderhund are on first-name terms with several of the staff and on speaking terms with several more. As I've not been in for a while many asked where I'd been hiding and we had quick chats in passing. Unfortunately one of the chaps, in a perfectly friendly 'joshing' way also asked "you're not one of these awful layabouts on benefits are you?".

    Chin hit floor and I wasn't sure what to say for a moment. I managed to think to shrug and say "well you've got to keep the dog in kibble somehow" but unfortunately by then he'd realised he'd put his foot right in it and we were both extremely embarrassed.

    Now in his defence, this may not have been a crack at me for being disabled. I noticed that Edinburgh was ned/chav/schemie central yesterday as if everyone on benefits was in on a day-trip ["Wester Hailes has come to town" as one well-dressed pedestrian put it] and it may have been a 'mutual' joke about that because he assumed I was on lunch from a job.

    But actually I'm "one of them" too. And it felt humiliating.

  4. I had a moment like this today actually since I've got ATOS coming round next week; there was a car outside across the street with someone sitting in, and my blinds were open. This car was WAY too nice to be a local, and why would people sit about in my area? I've seen it before as well here and there, just sitting there, not moving, with someone in the seat and waiting about for an hour or two.

    Were they watching? Did they make a note of everything I was doing? "Well, she can hobble about in her house therefore she's taking the piss"? Do they see my son is home and therefore I'm trying to fit work in between being on the computer typing just so I can try and stay awake?

    I went and sat down on the daybed and stared out the window, straight at whomever was in the car. Eventually - because I twigged? - it drove off rather quickly. I'm disgusted, honestly. Especially as my social worker was here and if they actually wanted to know if I was a "faker" maybe they could have called him, my part time carer, and the three specialists I put on the DLA form in the first place, but all these people tell me DWP hasn't even bothered to call them at all.

    Meh. Let them come; I'll be on them like a bad smell.

  5. Oya's Daughter - i was denied benefit after I'd been "seen going to work, lifting, gardening" and was told I was liable for prosecution. The idiots had been watching the house for a month, and following 'me' to work. Only, 'me' was my housemate, and I hadn't left my bed the entire time. Ah, our tax money at work. Grand isn't it?

  6. I'm glad you wrote this as I thought I was the only one going thru this. It's odd that I'm glad I'm not but I wish I was. To think this is how the government treat us is sickening. Fingers crossed for all of you feeling this way,let's hope our torment ends soon

  7. I think what's most disturbing is the people who actively deny it is happening. The highest rated posting on the Grauniad's piece the other day on people talking about suicide as the result of the cuts was some petty-minded thug claiming the attack-articles in the Tory rags are only affecting those who really are benefit frauds. I have a burning pain running from right ear to left elbow that flared up as soon as I was accused of being a fraud last month that would beg to differ.

    And even with people who are sympathetic it can be difficult to get them to realise the extent of the harrassment. My neighbour is a good friend and was horrified that someone had falsely accused me, but really struggled to get his mind around the idea that it was happening not because someone personally dislikes me, but simply because I'm disabled. I had to point out all the times I've been verbally abused in the street by complete strangers to get him to understand that it's a real phenomenon, but even then I don't think he can understand that it isn't just me, but nearly every disabled person facing this.

  8. My husband deleted a video posting, on Youtube, of an item he was reviewing, because on the day of the filming he actually managed to get his hand up as high as his shoulder on the video.
    Most days he can't even scratch his own ear, have you ever had a bit of loose ear wax that you can't scratch, its cruelty in the extreme.

  9. Carole aka RoboMam aka Mewsli22 February 2011 at 19:45

    It saddens me that in todays times, I have to read comments from friends on other boards, and people who I have never met, that express fear and a myriad of other feelings.

    I feel agrieved that genuine people are made to feel worthless. I had a similar experience to DuexEx . Before Christmas I was at my brothers house ( a late housewarning) when friends of my sister-in-law began to ask what people *did*, adding that it wasnt really important what people did, just so long as they worked for their money, and didnt laze around claiming benefits spongeing of taxpayers ( Im sure you can imagine what the inference was) it came to my turn ... I dont work but I pay taxes too ( a reference to indirect taxes that everyone pays) she then stuttered and said " But of course it doesnt apply to you " ....

    Ive had the *Lou and Andy * comment made as Ive passed by folk , and other things said that are not nice , but you get a thick(ish) skin .


  10. I'm thinking about locking my Twitter down, too. 140 characters is much easier, when your short-term memory and concentration are as limited as mine, than actually blogging. But people think I'd be able to concentrate for hours at a time... It's humiliating to admit otherwise.

    Also, I use Foursquare when I go out (that account's also locked, but the crossposts to Twitter are not). So people can see I do go out, but that doesn't mean I get a lot done in that time, or that I don't take ages to get ready. Nor does it mean that because I try not to make all my tweets about my illness and chronic pain, that I don't have any.

  11. The vilification of the disabled is not just aimed at those unable to work. Recently my husband was asked by a customer, 'Why do you need a stick, you seem perfectly able to walk?' Actually he walks with a pronounced limp. The reply was that he needs the stick for when his leg randomly, and frequently, gives way under him and to keep himself upright when the pain kicks in (after about 2 minutes) and there's nowhere to sit down. The truth is that without DLA, specifically the Motability car, he would not be able to work at all.
    I used to think he was being unneccessarily paranoid because he doesn't want to be tagged in any Facebook photos that could be interpreted as him having a life. Now I agree with him.

  12. Absolutely love the post title.... How apt.