Wednesday, 11 September 2013

Nothing to get up for?

As I have previously indicated on this blog, after 14 years of progressive illness and disability, I had to finally give up my career almost 3 years ago. I regard it as one of the hardest things I have ever done and, to be honest, something I am still coming to terms with.

Society has a very poor view of benefit claimants. Admittedly when any individual person sees or hears about me and my story, they always say "oh, we don't mean people like you". But it still grates and makes me feel angry or inexplicably guilty to see headlines about benefit scroungers, or 75% of disabled people really being fit for work (retractions later made), or 1 million disabled people dropping their claims through fear of assessment (claim later officially reprimanded by the office of statistics).
You only have to look at this recent tirade from an MP about badger protesters to see the sort of contempt and prejudice we may face.
I thought most of them were in the habit of lying in bed until the pubs open, or until the postman arrives with the benefit cheque (or do such things get paid straight into their accounts these days?)
Either way, since they are all malingerers and scroungers there is no real incentive to leap out of bed as soon as the dawn chorus strikes up.
Even if you ignore these false statistics and prejudice, the press and government is full of language such as people "festering" or "abandoned on benefits", being "written off" and people needing a "purpose".

So where does that leave someone like me, who already can't work and can only expect to get sicker health wise and more "disabled" as it is understood in general language.

Am I festering? Is my life now meaningless? Do I have nothing to get up for?

My response is no and I resent the implication that I stay in bed all day out of laziness or that going to the pub is my only goal in life.

After all, do working people only get out of bed on work days? Do they stay in bed all day during holidays and weekends, unable to find the will to get up because they don't have to go to work?
Do pensioners suddenly stop living when they reach retirement? Do we likewise consider that they also "fester"?

I'm not saying there isn't some readjustment. Work is a huge part of your life and losing it leaves a great big gaping hole, even more so if it is a "career" rather than a "job".
When you lose it due to illness, then you are obviously also having to deal with serious ill health at the same time. This readjustment does take some time, both physically and emotionally.

However being unable to work need not prevent you from finding things to do within your capabilities and which are worth getting up for. These new hobbies or activities may be a very long way off employability and may even seem "low level" or "small" compared to what you used to do (most of mine are done from bed!), but they can still be enjoyable and fulfilling nonetheless.
Some may simply provide personal enjoyment, but others may have a wider impact and contribute in a positive way to society.
For instance for a while I helped out on an online support group for people newly diagnosed with lupus, as this was something I could still do while bedbound.

Most of all it doesn't stop you being a valued human being to your friends and family. Maintaining these relationships is both vital and rewarding. It can also be difficult and challenging if you are very ill. Remaining (or becoming) a dependable and valuable parent/daughter/son/sibling/aunt/uncle or friend/godparent can be very large goals in themselves.
For example personally I am mostly housebound and bedbound (a situation I've improved by replacing my sofa with a daybed). I therefore invite my friends family to visit me instead rather than me go to them. Luckily they are able to do so very often and on a regular basis.
The main issue is that these visits are extremely tiring for me, and usually even physically painful. So they are something I prepare for and time carefully. The rewards though are indisputable, not just for me but for my friends and family. It is without doubt, as it should be, a two way gain.

In summary, while I may mostly be housebound and miss both my work and all the other more active hobbies I used to do such as sport and music, my day is still full of things to do as and when my health permits, however "small" they may be (just intermittently writing this blog when well enough is one of them). Some of these things simply bring personal satisfaction, while others I hope are having a positive impact on other people's lives, be it my friends and family or further afield.

A life can be good, fulfilling, rewarding and worthwhile without paid work if absolutely necessary. While I agree people should work to support themselves financially if they can, to keep implying that those who can't sit sadly around all day, contribute nothing and are worthless is both insulting and untrue.

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