Satisfactory conclusion.

To those who have been following my latest saga re ATOS.

Following a refusal to give in I eventually managed to get my old claim reinstated in full. It has been a struggle and has required a lot of contacting various people. I think that possibly the best lesson I have learned from all this is that you can never tell where the chink in the armour of officialdom is.

In my case it was the worry about my housing benefit, which was but one of the many consequences to my losing my benefit award, that lead to the window of opportunity to regain my original claim.

It is outrageous that severely ill and disabled individuals may be put to the additional stress of having to fight for their dignity in addition to fighting the condition that disabled them in the first instance. But sadly such is the case. I hope that my success will encourage others who are still facing this outrage. There is a light at the end of the tunnel ... even if the tunnel may at times seem endless.

The Whys, the Hows, the Therefores ...

I've been asked why I've given up. There are a couple or so of answers to it all, like with most things I suppose. The short one is that I am tired, worn out, right through to the bone. There is no joy in living anymore, no spontaneity, no hope. Possibly worse is the fact that there is no sense of purpose or meaning to any of it. But the very worst without a doubt is the utter lack of control, the dis-empowerment and the constant requirement to justify your very existence.

I am disabled. It isn't a condition I particularly aspired to. I didn't elect to become a cripple. I didn't wake up one morning and decide that actually it might be quite fun not to walk anymore. It happened to me gradually and over a number of years. At first it was just the occasional cramping of the leg muscles, the pins and needles, the creeping numbness. The waking up from the middle of a deep sleep with red hot flames of agony. And you carry on taking kids to school, walking the dog and going to work.

And gradually, the occasional cramping and pins and needles and red hot flames waking you up becomes more and more frequent and eventually, you spend more time in pain and it takes you longer and longer to walk to the shops. And before you know it, you spend more time resting between steps then you spend stepping between rests and your entire life is now centered not on where you are going but how you are going to get there.

 My ex had walked out just before my youngest was born. My children were 27, 18 and 17 years of age when I was finally diagnosed. They were all either already living their own lives or well on the way to doing so. That was a relief actually. The only ones directly affected by my increased impairment and crippledom were the cats, the dog and I. The animals couldn't care less if some days I did not have the energy to dress myself.

The dog was elderly and quite happy to just wander about the back garden on the odd days I couldn't walk her. She was sedate enough to amble beside the mobility scooter on the days we did manage to get out. As long as my weak right arm did not mean that I couldn't open a tin ... and with an electric tin opener that didn't happen ... they were all happy to sleep when I did, awake when I was and adjust to a new way of life.

Which was just as well as little did I realise that the reality of living with an impairment was going to take that much of an effort. Everything had to be fought for. I was used to fighting, I'd been a single parent for most of my life. During the Thatcher years I'd fought for my right to work. During the Blair years I was actually £40.00 a week worse off working then I would have been had I elected to stay on benefits.  I'd spent years working in deprived neighbourhoods as a community development worker and a community activist. But nothing prepared me for the fight I now faced as a disabled single individual in my fifties.

Blood from a Stone

And so it started ... I am old enough to remember a time when few of us had bank accounts. You got your wages in cash, you paid for your purchases and bills in cash; no cash ... no purchases till the next wage packet came in. But banks and the use of them became more widespread and commonplace. Next,  the government decided that all benefits would be paid directly into bank accounts and so even those of us who lived on the fringes of the economic society ended up with bank accounts. Not through choice and education but through necessity.

Next came the notion of direct debits ... wonderful things really if there are no hiccups and your income keeps dribbling in at a steady pace. It may take a while to figure out how to avoid missed payments, melding up the incomings and the outgoings so that there are no gaps but eventually, you get there. Those expensive bank letters informing you that you have missed a direct debit payment because you have no money in your account stop.

(Just as an aside I always wondered what good it was to charge someone for not having money in their account. So that the next time you have some money it suddenly is reduced because they have written to you to tell you you didn't have any in there. But hey hop ... banks have to make a living I suppose even if it is at the expense of those who haven't one ...)

I've had no income since the 28th of August 2013 thanks to ATOS claiming not to have received a questionnaire I sent them. Over the past couple of days I have had no less then 6 letters from my bank ... Each one putting me further in debt to the bank by £15.00 ... so now I owe the bank a total of £90.00. I am not even thinking about the late payment surcharges I will owe the various utilities - water, gas, electric, telephone.

Cameron, you may have used your sons' payments from disability benefits to pay for his nappies but I need it to live my life. To live it, not luxuriously but just to live it. To pay my bills, to eat something other then cold toast or lukewarm soup. To keep my wheelchair functioning ...

Rolling Rolling Rolling

Everything hinges on my ability to remain mobile. I've no option but to put all my efforts in enabling its repair. I've called up a wheelchair company I've become acquainted with during my stint as a volunteer for ShopMobility. GBL Wheelchairs have looked after my (t)rusty wheelchair since I first got her. Replacing the control box is possibly the best way forward however GBL have told me that a replacement control box would come to between £300.00 to £500,00 provided they can find one that is.

There are a couple of things against it. Firstly, they no longer manufacture my wheelchair. Which makes kind of sense I suppose. My Nippy is small, for wheelchairs that is, which means that she can be used on public transport. She has very good maneuverability (I can turn her on a five pence piece). She has a goodly range which is essential in such a hilly area as Brighton and the brakes on her are instant. Another essential ... especially when you are trundling around in a pedestrian area with people always cutting across. Secondly, I haven't £300.00 never mind £500.00 ...

But, and here is the real value in having a decent wheelchair repair service, they may be able to fix my current control box; given that I got her dried out as soon as possible and therefore have hopefully limited the extent of the damage. It will still cost between £100.00 to £200.00 and I will just have to hope that it is closer to the £100.00 ... I've been saving up towards the time when the batteries needed to be renewed so can use that and just pray that my batteries will last just a little while longer.

The delights of trundling

We take walking about on crowded pavements and in and out of shops as a matter of course. When you think about it, it is quite an achievement that we do not experience more accidental collisions. Think about it for a moment … Churchill Square or London Road the week before kids are due to go back to school; or how about the Lanes on a sunny Saturday lunchtime. Walking on crowded pavements has become so much part of us, it is like second nature and most of us do it without having to think about it at all.

Unlike walking, doing those things in a power chair or wheelchair can be very stressful and it certainly is very tiring. You cannot quickly sidestep when the pedestrian in front of you suddenly stops in his/her tracks to look at a shop window. A wheel chair or power chair is a heavy piece of equipment and can cause immense damage so you have to be constantly aware of small children making a dash in the opposite direction from mum or dad or small dogs dragging their heels at the end of a long leash. Groups of chance met long time no see friends standing in the middle of a pavement is something you just walk around when you are on foot. In a wheelchair or power-chair it requires a tad more active planning.

I am mobility impaired and rely on a power chair to take part in normal everyday activities such as visiting friends, going shopping or taking the grandchildren to the park. I do not feel that being disabled necessarily makes me worthy of more or less consideration than any other individual going about their daily business. Essentially I view my impairment as part of who I am; just like the colour of my eyes and hair, my height, weight and the fact that my voice couldn’t carry a tune out of a burning building even if you put it in a bucket.

I am not too proud to ask for help, if and when I need it and though it does grate when total strangers suddenly offer their help, I accept that it is done from a caring impulse and thank them kindly. I have noticed that since I have been reliant on the chair for getting about that I tend to get called luv, darling and sweetheart rather more often than before; much in the way we tend to talk to children or doddering old fools really. I suppose I notice it more as I haven’t always been mobility impaired. But again, I realise that it is done with the best of intentions and I accept it is as such.

All these things and others I haven’t mentioned are part and parcel of taking an active part in community life. I accept that they will cost me somewhat more effort than the average participant because of my personal circumstances. I don’t mind, in fact I am delighted when small children stare at me in my chair. I am more than happy to smile at them, wave and even stop and talk to them about the chair and why I am in it. I don’t mind the funny one-liners, “give’s a lift luv”, “it’s alright for some” “room for a littl’n?”. Over time I have garnered a list of one-liners I can give in response.

I was rather taken aback when some lout decided to just cut in and walked right in front of my forward proceeding wheelchair. Not so much at the fact that I had to brake rather quickly ... you get used to that in a wheelchair ... but more at the level of abuse he decided to hurl at me, despite the fact that both the wheelchair and I had come to a stop at least three feet from him. Oh, and in case you are reading this … No, I don’t know who my father is but I wasn’t born a puppy so a bastard I may be but a bitch I am not: and for your information, there are certain adult activities I most certainly would not engage in on a public thoroughfare.