Campaign? What campaign? Am I bothered?

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One day, idling around Facebook, I came across the story of LB, the Laughing Boy who grew up into a handsome teenager and drowned in a bath at a National Health Unit, where he was temporarily staying for assessment of his needs.

 

Even somebody like me, with no specialist knowledge, could see this was wrong.  My heart went out to the family.  I wanted to support them in finding out the truth of exactly how and why their beloved healthy son could possibly have died in this way at 18 years old.

 

I was able to help because LB’s family and friends organised a do-it-yourself, hands-on, make-it-up-as-you -go-along, online campaign.  This highlighted the struggle of an ordinary family to get help for a son who needed a different kind of care from his brothers and sister, especially as he became an adult.

 

He wasn’t ill.  He simply had two conditions that could perfectly well be lived with.  He was autistic and he had a form of epilepsy.  Neither should have killed him.

 

Yet the Health Trust responsible for his care said he died of “Natural Causes”

 

This was a lie.  The online campaign (Justice for LB) raised £26,000 to pay for legal representation for the family and after two long years an inquest jury agreed that it was a lie.  They said Laughing Boy died because of neglect in National Health Service care.

 

Not only that.  His campaign uncovered that there had been many, many other deaths, which had never been investigated.  National Health Service (NHS) procedures made it almost impossible for families ever to find out the truth about how their sons and daughters had come to die in National Health care, years before their time.

 

Health professionals who tried to tell the truth about NH services were called “Whistleblowers” and were gagged and/or driven out of their jobs.  Family members who persisted in protesting about poor care were victimised, harassed and even forced to leave their homes.  They lost their life savings in legal costs, attempting to uncover the truth.

 

Many families had just wanted to be able to care for their children, even when they became adults, at home.  Why couldn’t they?

 

Because the organisation of the care system in the UK made it well-nigh impossible for them.  The support they needed wasn’t there.  It was a long, complicated battle to get their children’s needs acknowledged and to find funding.  Procedures were confusing, over-complicated, constantly changing and poorly understood, even by those administering them.

 

Any provision of care was patchy and inflexible.  Your son or daughter had to fit in with whatever was available wherever you happened to live.  Parents and siblings became ill and grew old.  They became poor, because they couldn’t work at the same time as caring full-time for a family member.

 

The whole UK care system became a clunky mess.

 

This is the situation today.

 

This is what we campaign to change.

 

The challenge is to get lots of people actively involved in making good changes happen.

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LB’s Justice Quilt stitched by his supporters & displayed in Coventry Cathedral this month
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Stitching For Sanity

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I learnt to sew at primary school. We started in the infants and worked our way painfully from basic stitches and hemming through samplers to decorative aprons, finishing off with reading a pattern and making a blouse at 11 years old.

I never again bothered with these skills till I was 48 years old.

I can remember the day exactly.

I was hugely stressed. My daughter was pregnant with her second child. Instead of blooming, she was always horrifically ill during her pregnancies so my toddler grandson spent a great deal of his time in my office (I had a tolerant eccentric workplace – people brought their dogs in too).

One day I was hurrying past an art shop when I glanced at the window display of cross stitch materials and charts. I suddenly knew what I needed. On impulse I went in and bought a simple kit. Then, after a gap of 40 years I simply took up my needle and started stitching.

Thereafter I never went anywhere without my work. I stitched on the tube, on planes (it was before terrorism & no sharp objects), in hospital waiting rooms, at conferences, discreetly at the back of lecture halls and boring meetings. I entered a new hidden world of stitchers, secretly continuing a centuries’ old female tradition.

I could see why it had continued. Stitching got you through. It looked virtuous and was a creative outlet menfolk couldn’t object to. It was an absorbing object of skill and pride that let you escape the pressures and tedium of domestic life. It got you through the months when your menfolk were at the crusades or on the high seas or off hunting with their mates or about important masculine business.

It took time and patient concentration. It involved the satisfying feel of the materials, the painstaking selection and organisation of threads. There was the designing, choosing and following a complex plan. And the faith that it would come together at the end.

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Because stitching is never a complete picture until right at the end. The different parts of the design don’t achieve a pleasing balance until then. You have to struggle through the tedious, confusing, frustrating bits to reach the finished article.

But, of course, all this stopped when I started blogging for #107 days and #JusticeforLB. I now have a selection of unfinished (possibly never to be finished) work!

I have forsaken tradition for technology.

Though, on thinking about it, the actual processes of patiently acquiring the skills and faithfully sticking to your purpose in order to bring something together are still the same!

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Fighting Monsters 2

Three lessons in one blog + a pitch for Wisegrannie.com

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Lesson 1:
Once years ago I came across a short paper written by a liberation priest working in South America. It was called “Taking Sides”.

He challenged the widely held belief that any problem could be equitably solved by bringing the two parties together to discuss the matter. He pointed out that this was too simplistic. In some situations, where the power balance was unequal, it was a nonsense.

In oppressive or unjust situations, one party is in the right and the other is in the wrong. There cannot be a meeting of minds. In such a situation you have to look at the evidence, disregard the propaganda and the rhetoric, decide for yourself, then act for the right.

Sometimes you have to take sides.

Lesson 2:

Another time, when I was idly half watching one of the many World War 2 documentaries, I was suddenly shocked into attention. The scene showed an architect’s office and, on a drawing board, the meticulous plans for the gas chambers.

Somehow it was more chilling than the dreadful images of the death camps themselves. A cultured, urbane designer sitting down with his cup of coffee in his well appointed office, taking up his pencil and his slide rule and, with every attention to detail, calmly calculating the measurements necessary to achieve the greatest efficiency in destroying his fellow human beings.

Yet, by a purely technical quality assessment, here was a model of an excellent architect, carrying out his commission in an exemplary fashion.

Sometimes the worst monsters are in the office.

Lesson 3:

I learnt another lesson from the example of Elizabeth Kenny the pioneering Australian nurse who transformed the treatment of polio victims.

Ridiculed, looked down upon and obstructed by the medical establishment at every turn, she steadfastly fought on, in defiance of the accepted wisdom, to demonstrate that her approach was more effective. With grass roots support from patients, their families and others who paid serious attention to her evidence, she eventually succeeded in revolutionising practice and transforming the lives of victims.

In the end, if you can keep going, have sound evidence and a groundswell of support, you can win through.

The Way Ahead for Wisegrannie:

Campaigning operates on different levels. There have to be initiatives and activities to keep existing supporters in good spirit and to bring others on board. There has to be effective dissemination of information. There has to be conversation, debate and sometimes conflict.

So there is a a need for somebody to bring us back to our shared humanity, our fallibility and frailty and our dependence on each other. To get us down from our high horses, to encourage us, to remind us of our worth and make us laugh together again.

That’s the place in the blogging universe for Wisegrannie, the little old person hanging on in there, still fighting monsters in the ideological forests of an unequal world.

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Making a Difference – Blogging to Save the World

Why my story – and your story – matters

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Why do I blog, why do we blog? What gives us this urge to shout into cyberspace about what we think and do and experience?

So many voices out there, so many different people, hiding away from their families and their real world chores, bent over a keyboard,
And why? Why does it mean that much to them?

For some it’s simple, I suppose. It’s their job. It’s how they hope to make the money to keep their real world lives afloat and thriving.

But for the rest of us?

It’s been puzzling me all week, but I woke up suddenly this morning from a dream in which I was speaking to a group of people, and I felt I knew!

Although we’re, each of us, only one in a huge crowd, we want to be seen and heard. We know in ourselves that what we see and feel can make some kind of difference in the world. We know our story, our unique story, matters.

We might want to entertain or to share the frustrations of our daily lives. We might hope to help others through difficult times. We might want to share the experiences of all the places and people that we love.

But somehow we believe (enough to expend hours of our precious time) that our unique view is worth listening to, that it has the power to enhance and influence other people’s lives.

Of course we might be deluding ourselves. We might be vainglorious, wanting to bludgeon the world into thinking and seeing just like us.

But I don’t believe this of the majority. I think we’re doing the most worthwhile human thing of all – reaching out to others to say “Listen! This is what I’ve learnt along the way. It might lighten your path too!”

We believe our story matters and we need to share it.

We’re witnesses to life, our little bit of it. And by giving witness we can contribute to the whole world wide community, as well as our own tiny corner.

We want to make a difference. But we can only do so if we listen in return.

Because our stories matter.

Each and every one.

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