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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Symbols, Strength, Support and Magic

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In the dim and distant past, when I was fruitlessly trying to warn non- compliant adolescents of the danger of their ways,  I often wished that, instead of lecturing, I could just lay down the cards. A bog standard teacher has little credibility.  (As one pupil in a truly dreadful school acidly commented,  “If you know so much about everything, Miss, what are you doing working here?)

A Tarot reader, on the other hand, is a keeper of the mysteries, a seer, a purveyor of ancient wisdom. 

In the 60s, when such things were terribly hip, I had learnt to read the cards.  I gave it up, because it became a bit alarming how readily and unquestioningly people welcomed their interpretation.

Had I laid out a tarot spread for my sullen teenager and revealed the Tower, one glance would have had more effect than preaching.

The image is worryingly uncomfortable.

But the cards could be comforting too. They could convey the joy of fellowship, the presence of supportive figures and the reassurance that you could survive difficult times to win through.

Sometimes people just needed a symbol. One that said “You may not recognise it, but you have the ability get through this.”

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We all need comfort, support, affirmation and reassurance when faced with cruel blows in life. 

Sadly, the bereaved families facing a battle for accountability and transparency over the deaths of their children are having to find almost superhuman strength when they are at their lowest ebb.  No wonder despair is hard to overcome and the struggle for justice is so hard.

Yet one of the most valuable aspects of #107days and #107 days of action is the bringing together of all kinds of people with a variety of knowledge and practical experience to share their individual insight and counsel, thus building a common resource of support and information.

This is the real life magic, the impetus and the strength that is going to carry us through.

Though an image to help remind us wouldn’t hurt!

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Expelled from Eden

Myths are powerful.

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Since I’ve been part of Justice for LB and have come to know the other individuals or families involved, I’ve been increasingly struck by the similarities between professional attitudes to the learning disabled and to the old.

Mark Nearly and Sara Ryan point out how those with learning disabilities are regarded as somehow less human, so that their rights are seen as quite OK to overlook.

Well, I’m sorry to tell all you younger folks that it’s becoming worrying similar the older you get. Fear and dread of “care” is rife amongst my age group because, like the learning disabled, we oldies tend to have, or develop, complex medical needs. Older people are also seen as not worthy of certain categories of treatment.

I’d hoped that some older campaigning groups might see it politic to join forces in supporting the learning disability lobby, but possibly active Golden Oldies are too busy making the most of their lifetime’s Indian summer, or it’s just too uncomfortable to confront the realities of being vulnerable in the UK today.

Or perhaps, at our age, we just hope to be mercifully carried off before it comes to that.

When I was young I used to be part puzzled and part amused by my elderly Irish neighbour who used to pray diligently for “a good death”.

Now I find it horrific, that decades later, my generation should do the same, not because of lack of medical knowledge or facilities, but on account of a cruel, systematic downgrading of the rights of the vulnerable to decent, humane consideration.

And it is the cynical abuse of power by the authorities charged with our “care” that induces such disillusion and despair.

I can only liken it to being thrown out of Eden after eating from the tree of knowledge.

But, in our case, the knowledge we have sadly gained is of inhumanity and naked corruption where once we had trustingly believed to find honesty and a desire to serve.

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Surviving – Lessons from East German Activists & the Stasi

https://network23.org/infiltrators/2015/03/02/surviving-surveillance-east-german-activists-and-the-stasi/

I’ve blogged before about my addiction to audio books and my eclectic reading/listening habits. Well, last night, instead of bemoaning my insomnia, I was listening to “Mafia State” an account of Luke Harding’s experiences as a journalist in modern Russia, where he was a target for the rejuvenated Secret Police.

All of a sudden I was jerked completely awake by an account of the current methods used to drive opponents of the state to despair and breakdown. (Apparently the Stasi in East Germany had honed these to a fine art. They found them more effective than conventional torture in discouraging and subverting opposition.)

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The approach was known as “Zersetzung”, roughly translated as attrition, corrosion or disintegration. Basically the Stasi harassed their victim till they succeeded in breaking down their mental health and their resolve in campaigning against state authority.

What horrified me was the chilling similarity between these methods and the treatment bereaved families are currently subject to when they attempt to challenge the Health Trusts in whose care their relatives have died.

The Zersetzung of individuals was usually carried out through systematically undermining the quality of life of the target (both socially and in the workplace) with the intention of simply destroying the confidence of the target. The tactics used took various forms, such as spreading slanderous rumours, causing trouble at work etc. Rumours and information (such as about unacceptable political viewpoints, inappropriate behaviour….etc) that were passed on to ….social circles might be based on true facts, but were often plausible untruths that were hard or impossible to refute”

I quote from the article linked to the head of this post. Read it if you’ve a moment.

The Zersetzung of individuals had the aim of ‘switching off’ that person’s efficacy by undermining their confidence and their belief in the value of their activities. The Stasi did not usually care whether an individual was switched off through disillusionment, fear, burn-out or mental illness: all outcomes were acceptable, and people’s mental health and social standing during or after an operation were of no interest to the officers involved.”

Sound familiar?

But what’s heartening about this, with regard to JusticeforLB, is that in the end, the methods didn’t work.

There were three key factors in winning through to justice – the support of friends and activists; the strength and trust within and between campaigning groups; the openness of the groups to acknowledging and discussing the oppressive tactics to which they were subjected.

So, after a depressing  Action week #107days, be heartened.

The grassroots opposition movements made the biggest contribution to the revolution that started in East Germany in autumn 1989 – despite the horrifying levels of repression and surveillance that they had faced for decades.”

Vacancy -Monster Fighting Change Agent Required

On “turning things round”

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Before Florence Nightingale, “nurses” enjoyed a deservedly dodgy reputation.  Dickens, always plugged into the popular culture of his time, knew what he was doing when he created the ghastly Mrs Gamp and her dreadful friend.

Caring is a role that brings with it a very dark side. It is dangerously easy to take advantage of the weak and the sick.  It is so simple to blackmail or terrorise them into silence and acquiescence. 

The vulnerable quickly learn that, to get even half decent treatment, you have to be “good”. And good is always defined by the care provider as giving your  “carer” an easy time.

It was bad enough in the past, with gin-sodden, slovenly Mrs Gamp, but now we seem to have created something even worse: a whole monstrous system which is based on not giving the care provider a hard time.

Whether it be the Hospital Trust or the Local Authority or the judgemental Social Work Department, we little people are blocked from attempting to criticise or question. As patients, clients or employees, we are expected to be “good”: to be quiet and compliant; to accept without complaint every idiocy of chaotic administration; every petty cruelty of poor organisation; the endless esteem-sapping disrespect and indignity.

Because otherwise we know we’ll suffer, in body, pocket, mind or spirit, or any combination of the above.

Now Florence Nightingale was a ferociously determined and successful change agent, but she also had a good few things on her side. She was well connected, with privileged access to people of power and wealth. She had a highly successful market image, a sympathetic press and popular support. She was not a little person.

How are we little people going to fight our newly created monster?

I’ve seen institutions change, but it’s a big ask, as they say nowadays

1. You find a leader with determination, endurance and integrity.
2.  You get a board/cabinet/party/pressure group to back her/him.
3.  You get rid of the bad staff by (a) making them work (b) dragging them through disciplinary procedures, tribunals etc.
4.  You promote and reward the good staff, so that the balance of power & influence in the workforce changes, with good practice becoming the norm.

A big ask indeed! We’re going to need a monster fighting change agent, to battle alongside us little people.

Any good politicians out there any more?

Anyone with principles and a bit of backbone?

Situation vacant.

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Better Pens Than Mine

This week I’ve been listening to Dickens again in my audiobooks. I listen when I wake up at night and get bored. Usually they send me back to sleep, but this time a passage woke me up instead.

It was this extract from The Old Curiosity Shop

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” Grandfather, what was that you told me? That if they knew what we were going to do, they would say that you were mad and part us? Grandfather, these men mean to carry us before some gentleman and have us taken care of and sent back.”
“How, dear Nelly, how? They will shut me up in a stone room, dark and cold, and chain me up to the wall, Nell – flog me with whips and never let me see thee more.,”

Dickens was writing in 1840.

This week in England, Thomas, 20 years old, died. He had learning difficulties and had been in an Assessment and Treatment Unit (ATU) miles from home. He had been abused by carers in the past and, when admitted as an emergency to hospital this week, had unexplained carpet burns on his back. His family had been desperately trying to enable him to be cared for in his own community, not separated from the people he loved.

This week a report was also published giving details of the thousands of people with learning difficulties kept in ATUs. Many far away from home, cut off from their families. Many existing year after year, never going into the outside world. Many, it gradually comes to light, ineptly and cruelly treated.

The report’s authors were writing in 2014. 

When I googled The Old Curiosity Shop one commentator described it as a melodrama, too exaggerated for reality…