DLA is a lot more than money

The real issue with losing DLA is the validation

Sunday, 2 September 2012

DLA paperwork.  I’m going through the process again because, naturally, auto-immune arthritis has no cure, nor does fibromyalgia…but the goal-posts to what being disabled means has changed and now, unless I’m stuck in bed and cannot even blink, I’m not really disabled anymore.  This is what the new descriptors are doing.  I haven’t got a shade’s chance at midnight in passing this.  My only blessing right now is my son is currently in the clear till 2014…and unless there’s some miracle in autism he’s going to be fine and capable of continuing to receive it; residential status pretty much secures that for him.  I can breathe easy for that, at least.
The Paralympians are going to be re-assessed for DLA apparently after the competition…a competition which is actually being sponsored by the very company the DWP have hired to make disabled people’s lives a trial.  Under the new rulings it’s doubtful any of the Paralympians will be considered disabled anymore.  And here’s me with a completely invisible disability – very little paperwork, just a bone scan to even prove I’ve got it, and a few blood tests.  I live in a bungalow and they don’t hand those out to people my age, I’m just as housebound as I was before (maybe more so) but this isn’t going to count.  I’m under no delusions – I will turn this paperwork in and will be rejected.  People I know who are a lot more ill than I am are having the same issues, and having to fight for a year before it gets resolved.
The loss of my DLA will have a knock-on effect – housing benefit, working tax credits, that sort of thing.  I was getting the lowest rate possible, but it made a difference.  It’s not the money I have an issue with losing here – I can make do on less money, I’ve done it before.
No, the real issue with losing DLA is the validation.
No longer getting DLA puts me back into the headspace that maybe I am just a drama queen who just needs to “get herself together”.  Maybe I AM just sponging off the state.  Maybe I CAN just overcome those aches and pains and agony and stiffness and swelling and inability to even hold my brushes without wrist-braces and handgrips if I really, really tried!  There’s people in wheelchairs who are winning world records, for crying out loud – why am I not also a superhuman capable of incredible feats because I refuse to be labelled?  Why am I not an inspirational story and painting with my teeth?  Surely it’s just all in my head?  Surely I just need to lose weight?  Surely I’m faking it?

I cannot describe what the past eight years has been like.  I know you may get glimpses from this blog, but it really pales in comparison to my real life.  I have spent years being told I’m not that ill and just need to “learn to cope”.  I kept trying to work job after job, wondering why my body would give up and pack it in at a crucial moment.  Empathy from others pretty much disappeared as I “looked fine”.  I spent a lot of time just gritting my teeth and pushing forward because I knew no one believed or cared how much pain I was in.  Every single day I spent just pushing through the pain did a little bit more damage, eroded just a little bit more of my joints.  There may have been a time I could have recovered and maybe even gone back to athletics myself, but I missed it.  I try not to think  about it…though of course I often do.

And now, I’m going to be right back to the darkness and self-doubt as soon as this paperwork goes to the post.  This is really, really not the sort of thing I should have bashing around in my head, but it is.  I never used to have an abject terror of brown envelopes, but over the past two years, I feel my heart hammering and need to sit down before I open one.  Stupid, isn’t it?  I know…but it’s true.  It’s amazing – and not in a good way – what all this has managed to do to my spirit.  I used to be a fighter, I used to not give a damn what anyone thought of me, but now I’m always looking over my shoulder, wondering who is watching.  Am I having too much “fun”?  Do I look too happy?  Are my clothes too nice?  Who’s watching?  Who’s looking?  I’m staggered at the paranoia I’ve developed.  I’ve tried to counter it…but it’s difficult.  Sometimes, it’s impossible.

My logical mind knows why the DLA rejections are happening…the DWP have to remove 500,000 people off DLA, whether they’re legitimately claiming or not, so if they can shame a few hundred thousand in giving up, fair play.  My logical mind knows I’m going to have to fight, and fight hard, for my piddly £20.00 a week (yes, that’s all I was getting) so I can get a label and code I can wave under people’s noses to stop them sneering at me when they see me leaning on a cane.  It is proof I’m not a fake and a fraud; not just to other people but also (I am shamed to admit) to myself.

And now once I put this into the post, and wait for two months on pins and needles, it’s all going to be gone.  I’m under no delusions; it would be a minor miracle for my DLA to be re-instated.  I am not even going to think about the possibility of getting a mobility allowance – not a chance, even though I’m in vital need of mobility help.  These changes aren’t to help us, they’re not to make sure it’s all aimed to the “most vulnerable”; if they were, the DWP wouldn’t be trying to find ways to cut all the help which keeps most of us going in the first place.
Since I’ve had a condition for 14 years that some doctors still don’t believe in, and spent another five years trying to get a diagnosis for the disease lurking underneath the first one, validation quite honestly is pretty damn important to me.  It shouldn’t be, I know that – my logical mind says so.
But I’m afraid we are not currently ruled by logic.
Logic would dictate it would be easier for me to have the funds and resources to get better so I could – using the big buzzword of the past few years – “contribute to society”.  With funds to get out to physio or at least a pool that isn’t freezing, I might actually get back some of my fitness so I won’t worry about what happens when I can no longer walk.  With a vehicle adapted for my use that I can get in and out of (believe me, if things could be solved by just buying a Volks Polo I would’ve done it by now!) I could save a packet on transport costs and actually become more social again, and start getting my work into galleries.  Who knows, I might actually be able to venture out of my house and go out with my son from time to time as a family rather than having to resort to emergency carers from social services or residential schools.  Logic would dictate that spending the money on me NOW to keep my condition from deteriorating too far for repair would be a sensible course of action.
But logic isn’t working right now.  Instead of logic, we get told if we’re able to crawl to the kitchen to pour a cup of tea, we are “managing our disability”.  If we don’t ever leave the house and haven’t killed ourselves yet from despair and isolation, then maybe we don’t really need to go anywhere anyway, so that’s all right.  If I go on holidays – even if those holidays are a nightmare of planning, preparation, and pain – well, the very fact I went at all is proof we aren’t all that badly off and therefore need no assistance at all.  If I can mobilise with a mobility scooter- even if I don’t even own one – then I don’t receive the funds which could pay for a scooter to mobilise with in the first place.  Scooters are expensive – some more expensive than the cars I’m looking at for son’s Mobility.  It’s however my only option to move over 100 meters now, and I can’t even qualify for one.  This sounds like hyperbole…it isn’t.  This is exactly what the PIP descriptors is trying to implement, and the PIP goes into effect in April 2013.
So, I’m filling out my DLA forms today, mostly with a sense of despair and futility.  I’m preparing myself for another fight – it seems like all I ever do now is fight one bureaucratic process after another.  I’m tired, so very tired of it all.  But I have nothing to lose, really, so I’ll fight.  I’ll fight for my paltry funds which wouldn’t even cover a takeaway (if I could get one), because it’s not the money, it’s the validation I need.  It’s the acknowledgement.  It shouldn’t be that way.

But it is.