Category Archives: Campaigning

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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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.”

Thomas, fighting for his life

The avoidable deaths of two young Learning Disabled adults in institutional “care” in the UK last year jolted me out of comfy retirement into social media campaigning. (#JusticeforLB and #JusticeforNico).

The learning disabled, the dementia impaired, the frail elderly, the mental health patients in “community care” are routinely neglected, abused and sentenced to unnecessary, untimely death by the mismanaged, overstretched, underfunded system in the UK today.

Government at best stands by looking solemn and “learning lessons”, or at worst actively blocks change and punishes whistleblowers.

Another case today. Another suffering family. Another tortured child.

A whole load more

Today I planned to go to a CPA meeting as an advocate. Thomas is living in a specialist setting miles away from home and against his own and his family’s wishes. Lots of people are working together to support the family to negotiate an impossible system that is blocking every attempt to get Thomas close to home.

This weekend his family noticed unexplained injuries. On top of that he was struggling with a chest infection that they knew was serious. Families know that stuff, born of years experience of loving and caring for their son, and we all know how important it is to listen, don’t we?

It seems that the lessons learned, Death by indifference, Connor Sparrowhawk, Nico Reed….. a list too long to name each individual, have not been heard.

Thomas collapsed on Sunday night and was given CPR. He has sustained massive brain injury, his heart and…

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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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