Wednesday, January 09, 2013



  I truly feel for you. here we have professional form fillers. Those who understand the forms and how to answer them. What one has to understand from the outset is that they will do all they can to make sure you do not get the benefit, including lie. So one needs these professional people on our side. The questions are designed to trap you. The very first question about mobility, if answered wrongly, will not score and they will not go any further looking at the claim. They will reject it there and then at the first question. Why? The question asks if one can propel oneself a certain distance (with sticks, a wheelchair). I would have answered yes, in a wheelchair. I would not have thought it necessary to point out that my wheelchair is electric. So I fail. 

Also, people need to say, yes, but with resting time. yes but with a lot of pain. yes with bad gait and balance. yes but then i couldn't go further and I'd need a day to get over it. They also do not take into account that conditions, most, vary day to day and what one can do one day, one cannot the next. 

Then there are those question about how often one needs to toilet and how long does it take? Some adjucicators will think that if one pees into a bucket, you don't need help completely ignoring the fact theat said bucket could not be emptied by the disabled person and the fact that the benefit is supposed to help one live a NORMAL life. My life is not normal. 

One question we were asked is how long does it take me to get up and dressed to go out. I had no clue. John said about 3 hours and I said to him, don't exaggerate, that won't help. Well, the form filler said we should time it. 

From getting out of bed, taking drugs, getting washed, getting dressed, putting shoes on, and being ready to go out. On a good day that took 2hrs and 43 minutes. Shocked? Yes, so was I . 

You see most of us deal with it by adapting. Adaptation is slow and unnoticeable. I had been sick for many years. I refused help for years. I refused drugs. I refused to accept I was disabled. I ended up stranded in Stockholm, in terrible pain, unable to walk and very frightened. I have used sticks and a wheelchair ever since because I realised that without I was limiting my life. I still refused drugs to help me until the end of 2007. As a result, I have nerve damage and it takes more drugs to ease pain than it would have had I medicated 20 years earlier. 

Untreated pain causes nerve damage and means that more drugs are needed to be effective. Anyway, back to the form: I used to say i could shower myself. I can, after a fashion. But that isn't what is meant. You see, being proud and stubborn and tenacious, I would say yes I can shower myself when what that means is I can manage to get my clothes off and then on because I do not wear proper clothes but 'leisure 'wear (fancy word for PJ's) when I know I a need to shower. I can stand under a shower. It is dangerous with out stuff to lean on or hold onto thus I did it only at the pool for years and if I was too sick or too immobile to go to the pool I did not shower, maybe for two weeks. So when I can shower, I dress over a wet body or sit and wait to air dry. That means my answer whould be NO. 

I cannot use heavy pots and pans or handle knives. Thus my veggies are all bought ready done or John has to do them. Mostly I eat chicken cos it is ready cooked and I nuke it to warm it. When I have steaks that need cooking it is done in a pan that is already on the hob and all I have to lift is the meat. 

You see, I look okay to most people unless you see me in my wh/chair or on both sticks. Even then you'd have no idea exactly what I can't do or can do. I cannot write anymore. I am often asked to fill out forms and I always say, 'I am sorry, I can't write'. I also always add, 'I used to be able to write but my illness makes it impossible now' because I do not want people to think I can't write. I know it ought not matter but it does. 

When I go out for day or to a dog show, I overdose on morphine to ensure I do not have a bm. The same when we go shopping for the day or on holiday. Yes, if I am out with John I always could have him help me but really I do not want that. It's bad enough that he has to do all sorts for me. I know he loves me and I know he likes to help me but there are limits for me. 

So with knowing just a small part of what we go through perhaps people will see why we are so upset at the attacks upon us and the thoughtless comments. 

People also need to know that disability is not just about the money. Without the Blue Badge I'd be unable to go most places and holidays would be out of the question. Without a car, I'd not be able to go to the supermarket. Anywhere. I'd not get to my Dr's surgery. 

Those who know me know I can walk. Those who know me well know how I walk and those who are close know the pain it causes. 

 I really have no idea how the fakes manage it. Nor do I understand why they would put themselves through the humiliation and abuse to get a measly sum of money. I also don't see how they can afford to bribe Dr's for a serious diagnosis AND get serious drugs out them. 

You see it is not enough to have the diagnosis. If i also wasn't being given copious amounts of heavy duty drugs, and have prescriptions to prove it, I'd fail. 

I also am expected to see specialist and physios. Even the physio knows that doing serious physio is not possible but we go thru the rigmarole anyway. 

Lucky for me I can swim and I can put my mind elsewhere when i do because although the drugs stop severe pain when swimming, it doesn't stop my left arm going numb, electric shocks travelling down both arms. I am lucky because I am able to think of other things and get lost in that. I know most people cannot do that. I don't think they are fakes or they are lazy. I learned disassociation in a horrid horrid way so I now use it for good. I don't blame others for not being able to. 

 For the last couple of years any meeting with people, no matter how casual, if the conversation lasts, it inevitably turns around onto the economy and I know when it does I am about to be insulted. They will always, ALWAYS, bring up the disabled and how terrible it is how the frauds give the 'real' disabled, like you, God we don't mean you, we know you are genuine, no we mean those frauds who make it bad for those like you. In affect it is THEY who making it bad for people like me because they have swallowed the lie and keep repeating it. 

Now it is foremost in people's minds so that when they see a disabled person or a Blue Badge they think 'fraud'. I have written far more than I intended but it needs to be said and perhaps some will take it on board or they won't. 

We can all think we know someone who is defrauding the system. But we cannot know for sure. That person may seem healthy to you. I have had people say to me'oh i have the same disease as you' as they go off to spend the day walking around the shops. 

 How about this though next time you think you want to blame: what about the workemn you pay in cash? The insurance claims you make that are not kosher? The cheap goods you buy and don't ask where they came from? The cash in hand jobs you do or have done? The cheap tobacco and booze you buy from the man down the road? Now because I know people who do this should I class you all the same? Should I say to you every chance I get'oh I know YOU don't but most people are defrauding th tax man.''. 

 Why do we, the poeple, who have elcted the people in government to govern FOR US behave as if the Govt are all powerful and that those we envy and want to emulate, the rich, are all good and benevolent along with the Govt and yet we save our ire and scorn for ourselves, the majority of whom are not rich and not politicians and bankers and we most certainly did NOT cause this mess and we are NOT the budren. 

The old are not a burden. the sick are not a burden. The disabled are not a burden. The poor are not a burden. Children are not a burden. The rich and the politicians and the bankers are the burden. 

 We need the rich. I have nothing against the rich. Without the rich we wouldn't have jobs. All those people in service industries would be out or work. The designers and factories etc. We need them and not all of them are tax dodgers or immorally rich. Look at the good Bill Gates does with his money and there are very very very many of them who do good and who are philanthropists and are humble about it. 

We need bankers. We need politicians. What we need though is for these rich and these bankers and our politicians to be HONEST, have integrity, and compassion, and who behave in an ethical fashion.

 It is not that they are rich or that thay bank or that they are politicaians that makes them bad. No it is the character flaws. 

 I am very fortunate. I have gone from being very poor to being comfortable. I have never once forgotten being poor. Not once. It is only in recent years I have started to spend on myself and feel okay about it. Prior to 8 years ago, I did not have more than 2 pairs of shoes for example! Gulit prevented me enjoying being comfortable for far too long.


SenoraG said...

Damn blogger ate my comment.

As I was saying.....

Well said as always. I know exactly what you mean. My 79yo mother lives with me and she is on 24h o2. She can walk but when we go out, if we want to get places it is much easier on her if she is in her wheelchair and I push. (I wish hers were electric.) I see how we get looks when I park in the handicapped space, etc. Not everyone, but enough to piss me off.

You are right about the questions on the forms being there to trip you up. I am in the medical field so I help her fill out when she needs to. Sadly, too many well meaning people get it up the badorkus and it makes me cringe.

I agree, elderly, disabled, children, etc are NOT a burden. They have so much to teach us if we only stop judging and pay attention.

Stepping off of my soapbox now. This is one subject that really gets me going.

Anonymous said...

No, you are NOT a burden ... not to me, not to John and not to those who care about you.