Thursday, June 07, 2012

Mice Poo & Firemen - There's a micro society role for everyone..

Have woken at 5am grumpy, stiff and sore, to a wet, chilly day more suited to October, that great British medication, tea is yet to improve my mood. I could write a blog bleating about the lack of physio and all the 'too many things' I've had to do in the past few months, but underneath my grump it's all Big Society stuff spinning around my head.

Cameron's flagship Big Society ideal seems to have slunk off - I imagine it's hiding behind the bikesheds, chainsmoking wondering why no-one's come along to tell it off for not pulling its weight or ask it about the Big Society bikeshed hiding scheme it instituted for ministers. It's probably cross that the silly boy first to participate in its training didn't listen to sensible advice about shelters or cover, instead opting for the ministerial version of babies hiding behind their hands by thinking a tree would render them invisible.

But out in the real world, the micro society is doing it's job impressively well. It wasn't very obvious over the weekend as the media obsessed over one particular old lady, and the country rewarded her lifetime of hardwork by making her and her elderly husband stand in the cold and rain for hours. It occurred to me that this was a precise reflection of our changing social attitudes, fitting perfectly with the judicial ruling that it is 'dignified' for a different old lady to be left on soaking continence pads all night, despite being continent because it's too expensive to pay for someone to take her to the loo. They are both pretty callous ways to treat the elderly, regardless of whether one is wrapped up in all the diamante bling a nation can muster.

It was the micro society I thought of last night though. With some friends and neighbours we went to celebrate a 50th birthday with dinner in the local pub. The ages ranged from 15 upwards, there were mothers and daughters, teenage relatives and their friends coming together not just for a birthday but as a community. Amongst the fun, cake and laughter we also managed to discuss a neighbourhood issue and how we intend to address it as a group.

The hot topic of discussion for the evening involved firemen and nudity. But not in the same anecdote. Sadly. One of my neighbours has hurt her back quite badly and has been plunged into the world of repeat GP visits, pain and strong prescription medication. Just getting to the doctors was a major issue, and by the time she arrived she was collapsing with pain. Following much prescribing and only a small amount of being helped up by several GP's she was ready to go home. Staggering outside she found herself unable to make it to the car. Fortunately the GP's surgery backs onto the fire station, so a burly fireman appeared in no time to help. At which point my neighbour realised that she was sobbing, hadn't showered for days and unable to speak properly....but that she had been on just the one date with this fireman last year! Ah the micro society can be cruel.

After much discussion amongst the growing crowd the firemen decided upon a solution. They picked my neighbour up and lifted her into one of their vehicles to drive her home. Someone else following to bring my neighbour's car home. To some of our huge disappointment and frankly utter disgust we slept through the entire event and conceded for the first time that Nick Clegg might have a point about alarm clock Britian...even if he hadn't intended it for fireman perving on purposes.

It's not just in seaside small town land that the micro society is thriving, it's definitely followed me to London on my last few trips. Without qualifying for social care or access to work I have no way of employing a personal assistant...or in simpler terms, a wheelchair pusherer and keep Bendy out of too much troublerer. The amazing Declan Gaffney often comes along to fulfil that role but it's alot to ask someone to give up an entire day working, possibly more. So, this time I crowd sourced help from twitter again. It's very nerve wracking with a side order of can be humiliating scrounging around the internet for a stranger to come and look after you, but I have been incredibly lucky so far not just in avoiding outright psychos but in meeting some amazing people.

On thursday morning last week two women who I'd never met or interacted with online prior to asking for help turned up at my hotel for 9am to help me until I went home. One had the morning off work, and the other is currently a carer who had a day to spare. They both had connections to the world of disability, free time and wanted to help out. It was a fantastic experience meeting them both, Loretta and especially Sara I can't thank you enough. The micro society provided the help I needed and the priviledge of meeting such great people, but it also gave me the unexpected insight into how a world with full time support might be. I wonder if Maria Miller might like to come and PA for me one day - its an eye opener about how inaccessible and difficult the country can be for disabled people. I know a great supposedly but not actually accessible restaurant to take her too, and you never know, they might clear the mouse droppings out of the disabled loo or move the multiple obstructions to access it if they got wind of a ministerial visit.

And that other anecdote? That'd be the getting caught sunbathing topless by the teenage boy next door. But I'm not sure how that fits in to micro societies so we'll gloss over that particular incident..


Anonymous said...

Glad you ultimately received support from the 'micro society', but what strikes me is how tenuous that is. You can never really rely on that at all times; never really sure if the support will be there or not.

I know that at the beginning of my illness, that fact dominated my thoughts. I felt very vulnerable and it caused a lot of depression.

I did eventually, after 9 years, obtain a generous care package. I have to be realistic about the possibility that it could all go of course.

The care package brought with it its own problems. I am so grateful for the help, but having people in your home 3 times a day is very draining psychologically. Ironically, I used to feel isolated and alone; now I want to be isolated and alone! Mostly so that I can have some mental space to write, but as I said, I am very appreciative for the help, and goodness knows what state I would have been in had I not received it.

It's so unfair that if you have family living with you, that they are expected to take on the burden of care. My eldest daughter had to do that, but it wasn't fair on her. Fortunately for her, she moved out, which is only right. I still had to wait many years to obtain help, but I'm glad she went and made a life for herself.

I still use the 'micro society' though. My carers are not always on shift when I need to go out, which may be during the evening, so others kindly accompany me, and have been on call when I've needed help after a bad spasm.

I hope you will keep trying to obtain some support from the local authority; surely they can give you a few hours a week?

Anyway, good post as always.


cogidubnus said...

Hi Bendy

Long time no speak...

It's not often I'm jealous of a teenager, or yearn to be that age again, but...

All the best!