Why I should be the Tory poster gal (but I’m not).

Mr Duncan-Smith is positively champing at the bit to get sick and disabled people back into work. He’ll get you back into work even if you’re comatose, his belief in disabled people working is so strong.

Clearly the “people in comas being found fit for work” is a terrible thing, but IDS really makes no secret about how much he wants us to work. Well Mr Duncan-Smith, I’m your gal. I have my own business, I am capable of getting myself enough work to make a full time job, I love my work and it’s even work that helps communities work better together, which is what your Big Society is all about. Mr Duncan-Smith, I am the girl you’ve been looking for. (I swear that line sounded less dodgy in my head).

However. As someone who has taken 6 months out of work due to becoming chronically ill, I do not see people who are trying to get me back into work. I am at the bottom of lists, I am under a pile of paperwork and I am at the end of strict budget cuts. Apart from the fact that I’m working in a line of work that is getting royally shafted from all sides by budget cuts (but that’s another blog entry…) I am waiting for Personal Independence Payments that, despite having applied for them at the beginning of February I’m not expected to hear anything until June. I’m applying for Access to Work which, despite its name, seems to be having smaller and smaller criteria as to what “access” actually means.

I’ll lay my cards on the table right here Mr Duncan-Smith. I’m chronically ill yet desperate to work. I’m a professional in a job that is all about Big Society (despite you sacking us all but y’know, whatever). I have my own business and I can make it full time if I just have the right support. Yet, you’re not willing to give me the right support. So if I can’t work, what’s going to happen to the people who have never worked who are now suddenly being told they have to? What’s going to happen to people who have even more limitations than I do? If I can’t get enough support to work, how the hell are you going to support them?

This is why you need to listen to what the Spartacus Network are saying. Beyond the Barriers was released to the public last Wednesday and lays out a practical way of getting sick and disabled people back into work. It means people who cannot work are not living constantly under the eyes of the DWP. It means those who are able to work get the correct support that is on-going. It means that sick and disabled people are not punished simply for being ill or being disabled.

I miss my job. I am desperate to go back to it and I’d like to believe Irritable Duncan Syndrome when he says he wants sick and disabled people to get into work. But he’s not doing a very good job of showing it.


Going Beyond the Barriers

They say things always come in threes…today seems to be no exception. Today a government minister showed us that you can in fact steal thousands of pounds from your boss and still expect to be in a job. Today is also my two month PIP-iversary. Bring out the cake!

But, most importantly, today is the release of the Spartacus Network’s second major report into benefit reform, Beyond the Barriers. This report describes in detail the failings of the Employment Support Allowance system, the major failings of the Work Capability Assessment and, crucially, makes recommendations for changes in the system so that instead of being a barrier to finding work, the system supports those disabled people who can work into appropriate work.

Currently we have a welfare and support system for the sick and disabled that pretends to give with one hand and takes more away with the other. ESA was supposed to be a way for disabled people to get into work. Yet Access to Work schemes are underfunded and poorly run, and this week it was also announced that the Disabled Student Allowance – a vital means of support for sick and disabled students to continue accessing university and higher education – was to dramatically cut down on the list of things it would provide, meaning services such as note takers in lectures would now no longer be covered. With a welfare system designed to punish rather than encourage, it is clear that the ESA and WCA are not fit for purpose.

Beyond the Barriers sets out a visionary review of Employment and Support Allowance, making recommendations such as having a case worker that supports the claimant through the process of acquiring work rather than leaving them with no support whatsoever. It also suggests that claimants should be able to manage their own budgets so they can direct the funds where they would find most useful – getting appropriate equipment etc., and making sure their return to work is tailor-made.

This is a ground-breaking report. This focuses on treating sick and disabled people like people, not figures. This proposes a positive attitude by the system towards returning to work, rather than penalising those who can’t. It is vital that the ESA process accepts the fact that some people will never be able to undertake work. The stress and fear inflicted upon those who are pursued by the DWP means that ESA is viewed as a punishment for sick and disabled people, rather than a means to a better way of life.

See the full Beyond the Barriers report HERE.

Find out what you can do to support Beyond the Barrier and the Spartacus Network on Sue Marsh’s blog HERE.


From “well” to “not well”.

**just so you know, this post is a bit rambly and train-of-thoughty. This is what happens when you blog while on the tail end of a fibromyalgia flare…**

A few days ago, the hashtag #disabilityshocker emerged on Twitter. Disabled people from all corners of the internet told amazing and inspiring tales of how they did real, normal people things like going to the shops on their own, having a job, crossing roads and even *shock* wearing high heels on occasion.

I know. Inspiring, right? Those plucky disableds having lives and stuff, it’s enough to bring a tear to the eye.

But, apart from having fun mocking disabled inspiration porn, it also made me think about something else. In order for people to have this whole “I can’t believe she put her own shoes on, how clever!” view of the disableds in their lives, chances are they will always have known that person as disabled. Not in all cases I’m sure, but in many. If you’ve been disabled your whole life, or even for a number of years, you will have friends and acquaintances who have only known you as a “disabled person”. And who may say things to you like “goodness me, you’re married?” or “oh my goodness I didn’t think you could do things like go to the pub!”

And, being the self-centered sort of person I am, I immediately compared this scenario to my current situation which I’m sure is the situation of many people. Until last summer, I wouldn’t have classed myself as sick or disabled. Now, I’d definitely class myself as sick and I guess you could class me as disabled? I use crutches 99% of the time when I’m out of the house now, and my walking distance has decreased dramatically (it’s literally got to the point where if there isn’t a large cup of coffee waiting for me at the other end I will be very reluctant to waste the energy). However, everyone I know has known me before I got sick. Everyone knows the “well” me.

Reading the comments on the #disabilityshocker hashtag was kinda weird, as I realised that people really wouldn’t say that about me. They wouldn’t say “oh my goodness, look at you leaving the house on your own, well done!” (although it’d be nice once in a while…) because their perception of me is someone who should be able to do that.

So how does this transition work? How does someone move from being someone who is “well” to someone who is “sick and/or disabled”? Well, it’s difficult. Becoming sick is seen as a personal failing. Like we did something wrong, we didn’t work hard enough at getting better, we chose to let this happen to us. If someone was well, and now they’re not, it’s difficult to put that person in a different box. Let me explain a bit:

When meeting someone who is disabled, people will automatically form an opinion of them, just as they might about their gender, or their skin colour, or any number of other things. They may assume that this person will be really sweet and nice, that they might always be cheerful even in difficult situations. That they never moan, and that they always need help. This is the “Charity” or “Tragedy” model of disability, assuming disabled people are plucky and brave and always fight to overcome their disadvantages. But, if you already know someone who then becomes disabled, you can’t put them into that box so easily because you might know that they’re not always sweet and nice, or plucky, or brave because they’re a human being. So they struggle with where to put you now.

Maybe, then, that’s where a lot of the issues with “you’re not really sick” come from. I’m not capable of seeing you as a plucky brave disabled person because I know you’re not that way, so you can’t actually be that ill. I seem to like coming up with binaries so we’ll call this one the disabled/not disabled binary. Based on the charity model of disability, if you can’t be a plucky brave disabled then you’re clearly not disabled at all.

I don’t know. This post is a bit of a mushed train of thought, really (I’m coming out of a rather dramatic fibromyalgia flare so it’s an accurate representation of my current mental state at any rate…). But how do you go from being someone who is “well” to someone who is “not well”?


The Tories: Making Children Pay.

This post was prompted by Sue Marsh’s post about the Benefit Cap. You can read it here.

**Edited to add: Now, with new OMG!HOUSING!BENEFIT! section at the end of the post!!**

The new benefits cap states that no-one will be able to claim more than £26K per year in benefits. This figure is based on a couple, but it also states that it doesn’t matter how many children this couple have it will still remain at a cap of 26K. The reasoning behind the 26K figure is because the coalition say that this is an average household’s income. As Sue rightly pointed out in her blog entry:

“Of course it isn’t, because families bringing in 26k are likely to get a whole host of tax credits, child benefit and housing benefit too, but let’s not spoil a good bit of spin eh?”

This got me thinking, and two things (among MANY issues with this whole idea) stood out for me.

  1. That 26K would be the average household income for most households.
  2. That it doesn’t matter how many children you have, you still get 26K

So, to test both these theories I had to do a few calculations. I tell a lie, I hopped over to the awesome website turn2us.org.uk who are brilliant at telling you your benefit entitlement just by you plugging your details into their website. I came up with a partly-biographical-partly-hypothetical family and created a couple of scenarios.

**note: in both these scenarios I just plugged in my and my partner’s details for simplicity – dates of birth, local authority, social housing, rent, council tax etc. The only difference was I made us both non-disabled so I could take that out of the equation. I also gave us three school-aged (10,7 and 5) children, all born on Jan 1st. Birthdays seem to be an expensive time in my fictional household. I also assumed we had the “allowed” number of bedrooms in both cases to take out any Bedroom Tax complications**

Scenario 1 – Married couple with 3 children. Both partners work 37 hours a week at £6.75 an hour (just over minimum wage) bringing our joint income to £26,000 (the “average income” figure from the government). No other earnings/savings/capital.

Scenario 2Exactly the same as above, but with neither partner working. No income of any sort recorded in the calculation.

Scenario 1 results:

hb1 A benefit allowance of £7,822.88. Add that to the income of £26,000 and you get a total of £33,822.88.

Scenario 2 results:

hb2A benefit allowance of £23,992.28. Which is £9,830.60 lower than the first scenario.

So, what does all this mean, really? Is this realistic? Possibly not entirely – the earned income is GROSS income for a start, so there will be some tax and NI to pay which will take it down a bit. But I think we can safely say that Sue’s thought that earning 26K would still get you additional benefits on top is clearly correct. – it gets you nearly £8,000 a year on top of your £26K.

But, I think this hypothetical scenario raises some interesting questions. Firstly, is this morally right? The Tories are all about “making work pay” and there’s no denying that the working fictional family is definitely better off than the unemployed one. Is this a good thing? Does this mean that our fictional unemployed family should “get off the sofa and look for work?” Maybe. But, to me the really worrying thing is about the rest of this fictional family. Our three fictional children.

Having our three fictional children has earned our non-working family an extra lump of cash, that’s for certain. But, the cap for benefits is set at 26K no matter how many children you have. This smacks of the “well, if you can’t afford ‘em, don’t have ‘em!” attitude but that doesn’t account for a massive amount of societal problems that cause people to have children they may not be able to afford. The lack of aspirations among young women who can only see themselves having kids as a future. People who haven’t been educated enough in sexual health to take proper precautions to avoid unwanted pregnancy. The closure of sexual health clinics, youth projects, sexual health workers whose job it was to bring down the rate of unwanted pregnancy.

I believe that you should not punish children for the actions of their parents. This policy of the benefit caps does exactly that. It is unethical, it will push more children into poverty and it will punish children for the acts of their parents, and punish parents for not being able to access resources they need. The policy is a punishment, not an incentive, and only does more to push the vulnerable further into poverty. It needs to go.

**if you feel my calculations or my conclusions are wrong in any way or you feel I’ve misinterpreted something, please let me know in comments. I’m very interested to see what people think.**

EDITED TO ADD: THE OMG!HOUSING!BENEFIT! CLAUSE (because I’m going to have to point this out 30 times in the comments otherwise…)

“But, the people on benefits will get their rent paid for them while the other family won’t, so it’s not accurate!”

Exhibit A

Exhibit A

Please see Exhibit A. It’s a part of the benefits breakdown from Scenario 2, our family on benefits. As you can see, by the big red ring I’ve drawn round it, Housing and Council Tax Benefits are INCLUDED in this family’s total amount of money for the year.That means that, just like the working family have to pay their £500 a month of rent from their total income of £33,822.88, the family on benefits have to pay their £500 a month rent from their total income of £23,922.28. I haven’t missed anything out, both have to pay the rent.

(Seriously guys, trust me on this one. Not only am I currently on Housing Benefit myself, I worked for 3 years for the local council in their housing department and spent 8 hours a day talking to people about their rent and housing benefit. Please believe me when I say I know how Housing Benefit works!!)


None of the “cool” doctors want to treat fibromyalgia.

Fibromyalgia just ain’t cool. And there’s statistical research to back it up.

And I quote:

Respondents [senior doctors, GPs and final year med students] were asked to rank 38 diseases as well as 23 specialties on a scale of one to nine. …Myocardial infarction, leukaemia, spleen rupture, brain tumour, and testicular cancer were given the highest scores by all three groups. Prestige scores for fibromyalgia, anxiety neurosis, hepatic cirrhosis, depressive neurosis, schizophrenia, and anorexia were at the other end of the range.

It doesn’t show it very accurately in that quote, but the most “prestigious” disease to treat came up as MI, and the least was fibromyalgia. Colour me unsurprised. Two of the “popular” diseases occur mainly in men (especially as one of them involves have a specific set of genitals). Two of the least “popular” diseases occur mainly in women. All of the “popular” ones are dramatic conditions, which either involve slicing someone open and tinkering with a specific body part or a thin line between life and death. The unpopular ones are mostly mental health, except for fibromyalgia (which a lot of doctors would say is in your head anyway) and heptic cirrhosis (found in alcoholics, so I imagine there’s a large “you brought this on yourself” element.)

To some extent, I see where they’re coming from. In the life of a doctor, the ER moments where a patient has blood spurting from many orifices and they’re on the verge of death are no doubt seen as very exciting. Similarly, getting to do brain surgery would earn you a lot of kudos. But I think there are some other themes that can be drawn out of this:

  • You have to be able to see the condition, either physically or through a scan of some kind.
  • There has to be a medicine or procedure available to fix said condition
  • Mental health conditions are boring to treat
  • Especially women’s mental health
  • Especially women’s health issues where there isn’t a clear way to diagnose

Fibromyalgia doesn’t have a test to diagnose it, you can’t give drugs to cure it. It’s found mostly in women and you can’t physically see it. It doesn’t cause life-or-death blood spurting moments (I hope…) and so it’s a boring disease. So doctors aren’t willing to put in the effort to research it. It’s much easier to say “here’s a pill, it might help, go swimming and cut out the gluten” and send them on their merry way. While possibly thinking “she’s just hysterical, it’s probably all in her head.”

It is obvious that no-one is going to make a fuss about this condition, because so very few medical professionals actually care about researching what it is that makes us so chronically ill. So, as I’ve said before, that is why it is up to us, the chronically ill, to become the professionals. From our beds and sofas, in our pyjamas with our heat pads and blankets. And possibly stoned out of our gourds on heavy pain medication.

“I have this belief that if I can read a lot of science and do a lot of self-experimentation then I can turn this thing around.”

- Jen Brea, Canary In A Coalmine trailer

From now until the end of April, I’m going to spend as much time as I can manage researching. I’m going  to read about what the latest research on fibromyalgia is telling us. I’m going to teach myself the arguments from the pro-psychosomatic camp and the pro-medical camp. I’m going to learn about what people think fibromylagia is, what treatments have been tested and what’s worked.  Because no-one else is going to be interested in becoming an expert on my condition. So I’m going to become one myself.

So, this blog is going to come pretty fibromyalgia/chronic illness focussed for a while. There probably won’t be many youth work posts for a bit, but they will come back eventually. I just feel like I need to know what’s going on with my own body.


Eyes down for a full house: The Striver/Skiver Binary.

I didn’t watch yesterday’s Budget announcement as I was too ill (unfortunately? Fortunately?) but I got the general gist of it from Twitter and so on. Especially the #torybingo hashtag that went floating round Twitter last night. (for the rest of this blog entry I recommend this as background music, to really get into the Tory idea of “hardworking people”)

bingo So the line the Tories have been pushing ever since they’ve been in power is the “Work hard and get on” idea. Now, this literally means nothing. It has no intrinsic value, which means people put onto it what they think it means. Your idea of “working hard” might well be very different from mine, which is probably very different from George Osbourne’s. His idea of “working hard” is hard grafting at a job 8 hours a day, possibly manual labour, definitely something that involves getting grimy. Mine is “managing to get dressed and possibly even leave the house”. Just don’t expect me to do it repeatedly for five days a week.

The Tories have, of course, built their whole welfare and tax system on a pile of unmeasurable concepts. “Working hard”, “getting on” and “hardworking people” aren’t something you can measure. But it’s something you can use as a stick to beat the people who you feel don’t measure up. My “I might be able to leave the house” idea of hard working would, no doubt, be seen as “skiving” to someone who self-identified as a “striver”.

And herein lies the problem. The Tories have built up a grand idea of the hard-working, hard-grifting “strivers” and told them that, somewhere below them are those scroungy, work-shy “skivers”. Y’know, the ones who wear the tracksuit bottoms and smoke rollies outside the Job Centre all day, possibly with half a can of Special Brew and maybe a dog on a string. “You’re one of us!” George Osbourne says to the self-identified striver “on your minimum wage zero-hours job, you’re working hard and getting on, you’re on our side!” as he earns over £100,000 a year.

The way for the Tory-identified “skiver” to stop becoming a “skiver” is, of course, to get a job. But what if you’re incapable of working? It doesn’t matter how many part-time shelf stacker jobs there are if you are literally unable to work. So, you become the Tory “skiver” forever. There is nowhere else for you in the Tory worldview. You cannot work your way out of skiverdom, so you live there forever. And while people will often bring out the old chestnut of “Oh, I don’t mean people like you!” if you challenge them on that view, we live in a country with what we could call the “Striver/Skiver Binary” (ooh look I think I just came up with a new sociological concept!) If you’re not one then you’re the other, and it’s usually a case of “skiver until proven to be a striver”.

So if you’re disabled or ill, be it with a physical disability, mental health condition, chronic illness, a mixture of those and other things you will forever be a skiver. You may get singled out as a “don’t mean you!” but the Tories work on generalisation, and generally, we’re all a bunch of skivers. And because we can’t remove ourselves from that label, sick and disabled people will never be able to get out of being seen as the bottom of the heap.

But in fact, this is all smoke and mirrors. Because in reality, it shouldn’t be the “skivers” and “strivers” fighting against each other. It should be the people who “Work hard and don’t get paid enough” and the “disabled people who need more support” and the “unemployed who cannot find work” and the “drug addict who cannot find work and desperately needs help” and the “single mum who lives in a run-down council flat” and the “people who are employed by the public sector who get shat on from a great height” working together to defeat the real opposition, those in power who use their wealth and influence to keep the poor and sick and disadvantaged down. But the Tories want us to be so busy fighting each other we can’t see that in fact, it’s them we should be rallying against.


My one month PIP-iversary

My body appears to be rebelling against me. Everything below my neck has decided it no longer wants to be under my apparently tyrannical control, and it wants to separate and become an independent nation. There’s a coup happening. Unfortunately, I’m not convinced of its ability to successfully function without the dictatorial leadership of my brain, and am refusing to let it go. It’s turning into a rather nasty stand-off.

So today I rang the DWP. I was expecting to be on the phone for the better part of a morning but I spoke to an actual human being within a couple of minutes. Which is a shame as I wanted that nice chap who plays Handel’s Water Music over and over again on what seems to be a late 1980′s Casio keyboard to have some more playing time. Anyway, I spoke to an actual human lady, who told me that because my PIP application was having such a nice time hanging out with Atos, it was probably going to be there for the next 14 to 16 weeks before it was ready to let me know what the outcome was.

So I sit and wait, and see if Atos decide they want to call me in so they can poke at my arms and legs and see if they’re really as knackered as I say they are. They probably will – I have one of those “but you don’t look sick” conditions so I imagine they’ll want to check I’m not making up the fatigue, excruciating arm, leg and joint pain, complete inability to sleep, horrible back and neck aches and the myriad of other fun symptoms that have appeared since this whole thing started. Let’s start taking bets now, shall we? What’s the odds on the assessor either a) not having heard of fibromyalgia, or b) if they have, thinking it’s one of them made up diseases?

I’m saying the odds are not in my favour.


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