I have to go to the Job Centre on Friday. In fact, I have to go to the Job Centre every Friday because I’m now on JSA.
My mandatory reconsideration for my ESA claim was denied, which I already knew it was going to be. I could appeal, but I got 6 points out of 15 so it seems a bit pointless. Normally I’d be the first one going “no, you must appeal, try everything you can!” but to be honest I’m a bit knackered by the whole thing and after not being successful at my PIP appeal last year I’m not massively inclined to go through another one. So, hurrah, the system works! Y’know, the one where they keep saying no until you’re too tired and generally exhausted to try getting them to change their minds.
So I’m on JSA. I have a Claimant Commitment and I’m on Universal Jobmatch and I’m just waiting for the ideal job to come along…the one where I can be paid a full working week’s wages for three hours work conducted mostly while sleeping. That job.
In a fantastic twist of irony I’m actually better off now than I was on the assessment rate of ESA – assessment rate ESA is the same as the base rate of JSA – £73.10 a week – but on JSA I get “extra money because you’re disabled” (that’s literally what the extra is called on my JSA letter) bringing my weekly JSA up to £105.35 a week. Today my fatigue and pain were enough that I couldn’t walk from my sofa to my kitchen (for context: I could fall off the sofa and almost touch the kitchen they’re that close but I’ve just moved house and have no carpets so that would be a risky move). But of course on JSA you have to job search and “be available for work” which I guess I am if the work involves sitting on the sofa in my PJs knitting socks.*
*I would like to state for the record that I will happily take any job that involves sitting on my sofa in my PJs knitting socks
So I guess I want to wish the Job Centre good luck in finding me a job, I suppose. My tactic currently is to turn up weekly and say “nope, didn’t find anything I can physically do this week, sorry” for the foreseeable future and see what happens.
How do you tell the job centre that the issue with finding work isn’t the “finding” part, but the “work” part? Finding a job isn’t the issue. There are jobs out there in my sector – not as many as there were but there are some. Believe me, in fleeting moments I have looked at different job roles and thought “if I wasn’t ill I’d be so good at that job”. I could have a job, a managerial post, with a salary. If I did that I’d be able to rent a flat privately, I wouldn’t be sitting on the council waiting list because the Local Housing Allowance won’t cover a private rented flat and I’m pretty sure life would be a lot sunnier.
Funnily enough, I’m not in this non-working position because I don’t want to work. Far from it. I’m here because I’m ill.
I’m here because I get about two hours functional working brain time a day, on a good day. I’m here because I currently can’t cook a meal, can’t clean my own flat (vacuuming and washing up both involving a level of standing and arm-usage I’m really not able to achieve right now), am fatigued to a level where I sometimes have to have meal replacement shakes for dinner and a bus ride to the local job centre and back leaves me in bed for the rest of the day. And sometimes the next one. I don’t do this because it’s an easier life. An easier life would be working a good full-time job and being able to take care of myself.
Yesterday I discovered I hadn’t been successful in my claim for ESA. Out of a required fifteen points, I had scored a measly six. For mobility. The pain, the fatigue, the general crapness of my ability to function wasn’t so crap that I would be deemed unable to work. I’m going for a mandatory reconsideration of course – especially as the decision maker on the phone told me “you put that your condition is variable, which means sometimes it doesn’t affect you” and we all know that’s not what variable means, for me variable means “sometimes I can put on clothes and leave the house!” – but in the meantime I’ve been transferred over to JSA and I have to attend a “work-focused interview” on Monday morning at the Job Centre.
Y’know, the one that puts me in bed for a day, that one.
I’m already exhausted.
And just when I was all excited that I would have to fill in any more forms.
After just under a year of trying, failing, trying again and finally succeeding to get PIP, welcome to the sequel: ESA. Yup. My circumstances have changed, and now I have to make my own ESA claim. It’s like deja vu all over again. I’ve been sent a “Capability for work questionnaire” with the famous “Can you pick up a £1 coin” question, I have my sick note from the doctor and I’ll have not only a “Capability for work assessment” but also a “compliance interview” (because I’m going from being on someone else’s ESA claim to going onto one of my own and apparently I have to Do That The Right Way).
Are you ready for months of fun exciting blog entries about my third trip through the wilderness with the Department for Work and Pensions? I know I am!*
*At this point I’d like to personally thank the Department for Work and Pensions for giving me months, nay YEARS of material to blog about. I couldn’t have done it without you.
Ok my text wasn’t quite worded like that but the sentiment was the same. Yup, I got PIP. After not having it since August, after two applications two medical assessments and a tribunal, I finally got my disability benefits back. My Personal Independence Payments can start doing what they’re supposed to be doing – giving me personal independence.
We are very relieved. And I am very relieved I can stop thinking about it for a year (I don’t know how long or what level it’s been awarded at yet) because I am now so very, very bored of talking about it.
It didn’t quite break me but it got pretty close. Look back at my PIP tag for the whole gory story but it’s not an unusual one, or even a particularly bad one in terms of the fight to get PIP. Even with the BS I’ve had to go through over the last 10 months, I’m still one of the lucky ones. My story is just another one of the thousands like it. Getting disability benefits is a fight, it shouldn’t be but it is. At least I get a ceasefire for a year.
It was the queen’s speech today, as it turns out. This happened.
“…the government intends to introduce a legislative bill to place the NCS [National Citizen Service] “on a permanent statutory footing”.”
So. To be honest, I am not terribly surprised. Youth work has been moving slowly in this direction for a long time, putting “stuff” over practice, and numbers over longevity. Just as it is with the employment statistics, it’s not about the quality it’s about the figures. It doesn’t matter if your job is a zero hours job you don’t want, what matters is you got one and you can be added to the employment figures (up by a whole 2,000 people by the way, someone find the party streamers…). And so it is with the National Citizen Service, who boasts with having worked with over 200,000 young people in the few years it’s been running.
Cameron wants this for his legacy. But what about the legacy of the young people? In five years time, will someone who has been on an NCS course be able to say their life has been changed for the better because of it? If we talk to all these 200,000 young people in 2026, how many will be able to say their lives have been improved and made better through being involved? I’ll wager it won’t be many.
We all know this isn’t youth work. It’s prescriptive and it pays absolutely no attention to the needs of the young people it’s working with. For some young people it’ll be a fun summer and a step up on their way into uni. But what about all the other ones who fall off the end once their involvement with NCS finishes? Every professional who works with young people knows young people like this and knows that NCS just will not work for them. It’s short-term work when what’s needed is long-term investment.
And where does this leave youth work? It leaves it unfunded and unappreciated. Money is being thrown towards the NCS, it’ll get more and more difficult to find funding for good, long term youth work projects. There is already a lack of investment in good youth work, now there’s a big shiny government-backed logo standing in the way of youth workers being able to do any kind of good effective practice.
We’re pumping £1.2 billion into something that no-one knows the long-term outcomes for. But then, what does the long-term matter when you’re going to be leaving your post as PM in 2020 anyway.
(also: see In Defence of Youth Work’s post on NCS here)
I am awaiting an envelope, and that envelope will tell me when my ATOS assessment for my third PIP application will be. Third application, third assessment. I should be a pro at these by now.
When I had my appeal hearing back at the beginning of March, they asked me about my graduation. Not being at uni, or work, the actual ceremony. Did I go there myself? Were my family there? Why? Did I have to walk up steps? Did I use my sticks to walk across the stage? Did I talk to anyone? How did I get home?
Not gonna lie, about five minutes of questioning was based on around thirty seconds of my life.
My graduation was a very special day. It was not a “usual” day, and on that day I did not do my “usual” activities. I wanted to look nice, I wanted to enjoy myself, I didn’t want to walk across the stage with my sticks and I wanted to talk to people. Because I was so determined not to miss it, I accounted for days before and after it in order to save energy and then have time to recover afterwards.
I don’t want my full-time job to be “ill person”. Dealing with it is a full-time activity and it’s not going to disappear but I don’t need to have that as my primary identity: “Emsy, The Ill Person”. But anything I do that puts my illness into the number two spot (anything that requires me having to act like a regular human being and do things like “get dressed” or “leave the house”) is questioned by ATOS as a signifier that I’m not actually ill. If I don’t walk around (well, maybe not walk because, ATOS…) with a placard saying “GUYS I’M ILL” then I’m not ill. Or, I’m not ill *enough*.
I want to deal with my illness in my own way, in the way that is the best way for me and my (physical and mental) health. But if I do, I won’t be believed. At what point am I going to have to sacrifice money I need in order to have a sense of self-worth I also need? Because apparently, I can’t have both.
So, my PIP appeal was not successful. The panel didn’t award me enough points under the descriptors for me to qualify. So no PIP for me. I can reapply, and I will, but the back-payment of PIP between last September and now – which I would’ve had if my appeal had been successful – is gone.
I was going to write about the tribunal experience, about going into a courtroom and being questioned and about how this isn’t an exercise in helping someone, this is a tribunal hearing where you are expected to explain yourself. About how you have to give evidence in the “right” way, and not annoy the judge which suggests that they may be basing their decision on their opinion of you, rather than on your medical evidence.It shouldn’t matter how much I piss the judge off if the medical evidence stacks up in my favour. But thousands of people have done this before and this is not something out of the ordinary. For many sick and disabled people, this is ordinary. Going to court to try and get the basic level of help to live your life is now “ordinary”. Unremarkable. Expected. Acceptable.
Personal Independence Payment is supposed to provide you with exactly what it says – independence. For the year I had PIP I used it for yoga classes, bus travel, car parking, heat pads and support pillows and a whole load of other stuff. Having this stuff meant I could look after bits of my health – travelling, sleeping well, moving around to a level I could manage – that meant I was able to do other things I wanted to achieve, like finishing my MA. Unfortunately, the things my PIP allowed me to do turned out to be the very things that led to it then being taken away from me again. The argument “when I have PIP I’m independent so I need to continue having it in order to maintain that” wasn’t enough. Which leads me to believe this isn’t about “independence” at all.
As for me, I’m alright. On the day of the tribunal I was upset but I went through the five stages of grief pretty quickly and had got to acceptance by the next day. I’ll reapply, I have other things to do, this isn’t the be-all and end-all of everything. However it does mean you’ll now have to put up with me going through the PIP process *again*…but you can blame the tribunal service for that one!