Originally posted July 10th 2007
So after all that hassle, I finally get to the room to meet the jobs broker. I was bored, miserable and fed up when I went to the jobs fair, frankly all common side effects of being without a job, and even though it was a complete and utter waste of time (and bigger waste of money!) I still figured I had nothing to lose by going along to meet this guy.
The meeting had been arranged over the phone, and at the time I'd thought I was talking to the much older man I'd met at the jobs fair. So really I didn't think much of it when he was asking about places other than the job centre to meet in my local area and just said the job centre was fine for me. He mentioned a cafe several times which I thought a little strange but not dramatically so until I arrived at the meeting today and found it wasn't with the much older man I'd thought I was meeting but a guy around my kind of age. Odd, not massively so, just well, odd.
Some years back, before I was diagnosed with Ehlers Danlos and when the doctors didn't know what was wrong with me so thought it just best to tell me I was lying/attention seeking/needed a psychologist (choose whichever label you like, they were interchangeable and I never even got to see a psychologist!) I signed up with a different job broker. There seem to be rather alot of job brokers. No actual jobs for people with disabilities, or anything tangible being done about that situation....just well, alot of job brokers. I signed up with this job broker after being told that it was only possible to receive help from a job broker if you signed up to them...and that it's only possible to receive help from one particular job broker at a time. Apparently they receive funding for each person they sign up. So I sign up expecting that I'll get help appropriate to a disabled graduate in my situation. What I didn't at any point expect was to be hassled constantly by said job brokers to attend completely inappropriate courses on CV writing skills, confidence boosting, how to job search etc. All well and good, but not appropriate for my needs. I certainly never expected the postman to bring me envelope after envelope containing photocopies of job adverts from the local papers. Job adverts with deadlines days prior to my seeing them...or they would have been had I been waiting for the job brokers to cut the adverts out of the papers, photocopy them and send them to me via snail mail instead of simply looking at them all first hand in the local press like I was doing. In the end I managed to find a job myself and the job brokers were able to put it down with their figures as I'd been signed up with them whilst looking for work....aren't you glad this is all funded by your taxes?
So fast forward through getting really ill without knowing why, losing job, being diagnosed with EDS and here I am, in the job centre wondering why on earth I'm speaking to another job broker. That feeling grew. He said he understood I was looking for a job working from home. I said that I had some fairly major concerns about whether I am physically capable of working yet, and particularly managing to maintain anything regularly, and of course the position that puts me in with regards to benefits and managing to earn enough to support myself. The job broker wanted to know 'what was wrong with me' and why that caused problems with work. He told me that he thought someone in his office had 'that thing you've got that I can't pronounce....that doesn't it make your organs in the wrong place' er, well no, and not having been to medical school I'm not even going to start guessing at what the thing that makes your organs in the wrong place might be! I tried to explain to him that EDS is a collagen disorder, causing frequent joint dislocations, meaning it's extremely painful and tiring, that it's difficult to do basic tasks and I never know from one day to the next what tricks my body will play on me, but I could tell from the way his eyes kept drifting to my breasts that I was on to a bit of a loser. I told him it was like the difference between a 'normal' body being held together with super glue and my EDS body being held together with a piece of gum someone has chewed then left in the sun to go runny...he said he though it was a good analogy then looked at my tits some more.
By this point I was really uncomfortable, in every way. I apologised and said I had to get up and move around. My hips and SI joint were screaming and I had no choice but to lean my upper body flat on to the table to lever myself up, probably giving him a view right down my top. To his credit the jobs broker managed to carry on talking as I wobbled next to the chair, my hip visibly flicking in and out of it's socket. He talked about life coaches, listing skills, transferable skills, lots of nice things, until I said that was all well and good but I was afraid it simply came back to the same few problems again. I live alone and so have to be able to earn enough to support myself whether that is topped up by the benefits system or not. To earn enough to support myself on a part time wage from home I would have to earn at a relatively high level and part time home based jobs are notoriously low paid. The answer to this apparently was to book in at the job centre and have a 'back to work' calculation done to see whether I'd be better off financially working or on benefits. I said that I'd done that for myself several times the answer to which was to tell me I couldn't have done that! Apart from the fact that actually it's not that difficult to do on a rough basis, there's a very handy website which helps you figure these things out and now the jobs broker knows about it too.
I tried to explain to him that I had other concerns to do with practical issues, like for example how would I manage things when I had a more substantial injury or was ill and not able to work for a period of weeks or even months with no-one else to support me financially or practically. The answer to that apparently was that now New Deal is set up so that if for health reasons you have to go back on to benefits it happens within a day, but every experience I've had of the benefits system tells me that might be a nice idea but is about as far from the reality as it'll get. Nor do I believe that a job broker would sort it all out. More to the point though I like so many people have a fluctuating condition that goes through periods when it's more stable than others and that this the very system supposedly set up to deal with such issues doesn't even know what they are to start thinking about them let alone try to understand them.
The jobs broker told me that since I get Incapacity Benefit I can do something called permitted work and keep up to £86 a week. I said I didn't get Incapacity Benefit apart from the National Insurance credit contribution part and got Income Support instead. He wanted to know why. I then had to explain to him that it was to do with my lack of diagnosis meaning I'd not gone on to benefits until after I was 25 and so not been protected by the young person's rule despite having been ill and unable to work for years before that so I don't have the national insurance contributions either to entitle me to Incapacity Benefit. He said that as I get Income Support I would only be able to keep the first £20 of anything I earn as long as I work for less than 16 hours a week, and after £20 money would start to be deducted from my benefits so he suggested that I try to work between four and eight hours a week in an office, just to see how I got on at first and only keep the first £20. He said he had to be completely honest and say that in his experience often even just a few hours like this triggered the removal of the care component of Disability Living Allowance. He seemed to have forgotten I'd said that for physical reasons I needed to either work completely or almost completely from home.
I didn't need any sort of 'better off' or 'back to work' calculation to know that this is a situation that can only make me worse off even before I look at the finances. These are the very people the government have set up to try and address the barriers facing disabled people entering the workplace and address the numbers in receipt of sickness or disability related benefits yet seemingly few or none of these people actually have disabilities or any real understanding of the vastly differing barriers faced by us. There are specific and valid reasons I would need to work part time and from home and I know full well that doing so would increase the physical pain I endure every day, increase the fatigue, and practically make my life more difficult without any support.....but still it's something I want to do and feel will be worth doing. Simply ignoring the barriers I face and reasons for those problems and suggesting I 'just' do a few hours a week is not an answer, nor is the knowledge that the one and only non means tested benefit intended to meet the additional costs caused by having a disability will in all likelihood be removed purely because managing to find paid or unpaid work gives faceless bureaucrats an excuse to claim the care needs I have must no longer exist.
I apologised to the guy and said I felt like I'd wasted his time. I simply couldn't be bothered trying to explain to this young man who'd fallen into this job after university, unable to find anything he actually wanted to do, that I wasn't being difficult or negative, but that these are all the barriers stopping me finding a way of working and ignoring them because you don't understand them or know how to deal with them won't make them disappear. Part of me felt impossibly frustrated and part even more resolved that this is something I will have to figure out for myself as the system makes it impossible.
As I left the room I was faced with several blank key coded doors. I couldn't remember the way the security guard had brought me through the building and there was no way I could see of contacting a staff member for help. No one was in sight, the main job centre being on a different floor and there was no where to sit and wait. I took the only decision I could which was to use the main entrance with stone steps down to the street. Fortunately only a few, but precarious to say the least whilst clinging on to the side of the building for support and hoping not to be surprised by any additional dislocations sending me sprawling head first. I made it back across the road the way I'd came and gratefully into the car.
As I drove away I saw a hedgehog crossing the road, all spines and bluster looking so very vulnerable against the metal of my car. I stopped and dithered about getting out to carry it safely across, childhood warnings of fleas and disease ringing in my ears so I continued on home only to be compelled to return later to check it was safe.