It all began when my disability had deteriorated so badly, that being a mum of an energetic little boy AND having a demanding work life was just too much. Something had to give and work had to go. I tried hard to plan for the shock of living on Income Support compared to being a Local Government Principal Officer and all the benefits that came along with having a good salary and steady job. But in reality nothing could prepare me for the shock and contrast of having such a reduced income.
There was little use in worrying about things. I was (and continue to be)severely disabled and it was inevitable that at some point I'd need to depend more upon the welfare state as my condition got worst.
But it's never that simple and I felt very uneasy, and at times, ashamed of being termed a long term 'scrounger' by some, from a society that seemed to continually point the finger and look to blame and shame many groups of people, including those on benefits.
As time went on I began to take a much more hands on approach to my money. I planned carefully, changing to cheaper services for things like gas, electricity and telephone, cutting out coupons for use at the supermarket, working out menus to fit in with weekly offers or particularly those things marked down, saving as little as £1 a week with the local toy shop Christmas Club. Giving up smoking, eating simple food and above all learning the rigours and importance of everyday budgeting and the necessity of household financial planning for next week, the week after that and the week after that. At times this seemed tiresome, but generally I felt my almost military approach enabled me to repay existing debts, whilst having careful thought about what was needed to keep the house warm, clothes on our backs and food on the table.
As the years went on with more debts paid off, I attempted to add the monthly payment of the last paid off debt, to the next one I was prioritising. I tried hard to make a monthly treat allowance for us and I remember how much my son and I looked forward to that treat.
Now 14 years on, I feel I have lost touch with the value of money and particularly what people earn today. Even though I am very careful and make sure the bills get paid, like so many people I end up with much less food money than we need because I've chosen to prioritise other things, like school activities, for example. Don't get me wrong, we always eat, never go hungry and 90% of the time eat healthy stuff too, it's just we can have weeks when the economy range which ordinarily feature heavily on the shopping list, take centre stage - which is fine!
With ILF care charges of more than £80 a week (for disabled people on DLA and Income support), petrol for my motability vehicle for the 11 mile round trip to my daughter's school twice a day, we don't live the high life. On a recent free
5 night holiday to a friend's apartment in Scotland, I had to find over £500 to make up my carer's wages, as this isn't included in my care package. I also find it hard to pay the extra expense of gas for heating, but it's necessary as I have to keep warm to keep well. And after many years of learning to save small amounts of money with the local credit union, I try and save, what I can, when I can, not brill by any means but a standard I want to try and live by.
Even though this blog gives a flavour of my life, how can I possibly suggest we live in poverty? In the UK today we are poor in terms of income and the things we can't possibly afford to do. But our basic needs are met.
In global terms we are wealthy. I can't begin to think of the conditions and situations that other people, but especially disabled people, may live in throughout the world. I can't imagine my own personal situation if it were transferred to another culture, without the backing of an almost 24 hour care package available to me, albeit at what seems to me a massive charge, in the UK.
Yet my comments may offend those who are also living on benefits here. I don't mean to. I know how hard it is to live in this situation long term. I get sleepless nights and worry about how I'm going to pay for this and that. My savings amount to almost nothing.... less than £100. I am totally dependent upon the state and must live their by rules.
It's scary to think of my life like this forever. I am resigned, but reluctantly so. Perhaps it's easier to think of my life as part of a global picture? Maybe it cushions the reality of my position in the UK? Nevertheless, it can't takeaway from the fact that there are no doubt thousands upon thousands of disabled people globally who don't have their needs met, or even a glimpse of the services I have access to (even though I may complain about them!)or the provision of a welfare state, where those in need can receive and be cared for in a society that purports to value life.
Footnote: I don't see disability services and benefits in the UK through rose tinted glasses. Far from it. The reality of the continual and exhausting fight disabled people have in order to gain support and services here in the UK, is all too familiar to the disability community.
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