Category Archives: Equality

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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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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The Seventies – Sorry You Missed Them?

On pens, paper and a past world
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Last night I watched a “documentary” about the Seventies. It was really an excuse to use all the naughty words and scenes that are now banned from view. Assorted young people expressed mock horror.

It got me thinking about that pre-online era , its lack of monitoring and surveillance, its strange innocence of the seedy corruption now being so ruthlessly exposed.  Swearing was still considered improper in mixed company or outside the privacy of the home. And homes were still considered private space. If someone had seriously suggested we shouldn’t smoke in them or have a drink while nursing our infants, we would have gaped at them in amazement.

Nobody checked up on you much, record keeping was often sporadic and haphazard. When all you had was paper and pen, or a typewriter that demanded carbon copies and correcting fluid, recording every detail was too onerous and bulky to be manageable.

Of course, the opportunities for evil to flourish were manifest, but for most people, I would point out to the judgemental young of the online era, this didn’t impinge hugely on their day-to-day lives.

I particularly loved the job references of those days. They were seldom wordy. One of my favourites, which conjured up a whole world picture in a single sentence, was elegantly hand written on ancient college notepaper.

” Alisdair’s First in Classics was well-deserved.”

Poor Fiona, however, was given shorter shrift from her employer.

“Miss Smith is a well-spoken, neatly presented young woman, who has been with us for two years”

Yet when I look at the painstakingly documented minutae on today’s profiles and portfolios, I wonder how much more they actually tell us about the essential Alisdair or Fiona, than those single sheets of the past.

We’re smothered with all the mountainous documentation on multiple competences, which information technology has made possible. Hundreds upon hundreds of boxes meticulously ticked, but has the quality of work/workers and the culture of the work environment really been manifestly improved?

Of course we can never easily tell, ironically because of those very  deficiencies of record keeping and patchy measures (if any) used in the past. Commentators on the Seventies are free to claim whatever suits their own perspective and ideology.

All I can say for sure is that, despite all the information we now have, it doesn’t seem to prevent the corrupt practices of global business, powerful elites or the authoritarian, opinionated, politically polarised gatekeepers of public services. It doesn’t even prevent the brutal murder of little children in their cruel homes and CCTVed communities, nor the institutional ill-treatment of the old and vulnerable.

We little people just know more about it now.

We can see it on television.

Just like all the explicit brutality and close-up, lip-licking violence that was never screened in the benighted Seventies; the online porn desensitising a whole generation; the dubious faux porn of the pop video degrading “emancipated” young women; the pitiless exploitation and humiliation of the afflicted in “reality” shows; the freak shows masquerading as medical “documentaries”.

For many of us, the Seventies weren’t such a bad time to be alive – despite all that shiny artificial satin and those silly platform shoes!

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The Seventies – Sorry You Missed Them?

On pens, paper and a past world

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Last night I watched a “documentary” about the Seventies. It was really an excuse to use all the naughty words and scenes that are now banned from view. Assorted young people expressed mock horror.

It got me thinking about that pre-online era , its lack of monitoring and surveillance, its strange innocence of the seedy corruption now being so ruthlessly exposed.  Swearing was still considered improper in mixed company or outside the privacy of the home. And homes were still considered private space. If someone had seriously suggested we shouldn’t smoke in them or have a drink while nursing our infants, we would have gaped at them in amazement.

Nobody checked up on you much, record keeping was often sporadic and haphazard. When all you had was paper and pen, or a typewriter that demanded carbon copies and correcting fluid, recording every detail was too onerous and bulky to be manageable.

Of course, the opportunities for evil to flourish were manifest, but for most people, I point out to the judgemental young of the online era, this didn’t impinge hugely on their day-to-day lives.

I particularly loved the job references of those days. They were seldom wordy. One of my favourites, which conjured up a whole world picture in a single sentence, was elegantly hand written on ancient college notepaper.

” Alisdair’s First in Classics was well-deserved.”

Poor Fiona, however, was given shorter shrift from her employer.

“Miss Smith is a well-spoken, neatly presented young woman, who has been with us for two years”

Yet when I look at the painstakingly documented minutae on today’s profiles and portfolios, I wonder how much more they actually tell us about the essential Alistair or Fiona, than those single sheets of the past.

We’re smothered with all the mountainous documentation on multiple competences, which information technology has made possible. Hundreds upon hundreds of boxes meticulously ticked, but has the quality of work/workers and the culture of the work environment really been manifestly improved?

Of course we can never easily tell, ironically because of those very  deficiencies of record keeping and patchy measures (if any) used in the past. Commentators on the Seventies are free to claim whatever suits their own perspective and ideology.

All I can say for sure is that, despite all the information we now have, it doesn’t seem to prevent the corrupt practices of global business, the powerful elites or the authoritarian, opinionated, politically polarised gatekeepers of public services. It doesn’t even prevent the brutal murder of little children in their cruel homes and disfunctional CCTVed communities, nor the institutional ill-treatment of the old and vulnerable.

We little people just know more about it now.

We can see it on television.

Just like all the explicit brutality and close-up, lip-licking violence that was never ever screened in the benighted Seventies; the online porn desensitising a whole generation; the dubious faux porn of pop videos degrading “emancipated” young women; the pitiless exploitation and humiliation of the afflicted in “reality” shows; the freak shows masquerading as medical “documentaries”.

All in all, the Seventies weren’t the worst time to be alive – despite all that shiny artificial satin and those silly platform shoes.

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It Was Always Thus

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As I follow Sara’s terrible account of her slow ongoing torture by the Health Trust whose systems and employees caused her son’s preventable death, I am continually reminded of Dickens’ Bleak House, the first book I studied when I went to university.

It might seem a depressing choice, but it is a good preparation for dealing with the law and other public bodies.

Sara, in her last post, asked how people experience working for public services today.  I fear many of them would recognise Dickens’s Court of Chancery all too well. Cases drag on interminably,  “complainants” become increasingly desperate, their anger either fading into depression, or taking over their lives to the detriment of every other facet of their existence. Relationships break down under the strain.The only beneficiaries are the legal firms growing fat on fees.

Yet today’s LA and Health Trust employees surely cannot be likened to the miserable clerks inhabiting Dickens’s dark world, aware of the situation and sufferings of their clients, but powerless to make any change?

While today’s offices may be brighter and have more ergonomically designed seating, power relationships still remain the same and all the information technology in the world doesn’t change that. Basically, just like Bob Cratchit, employees do what they are told. They know from the example of whistleblowers that, if they don’t, all the employment legislation in the world won’t protect them from being rendered unemployable.

In any office there are nasty people who will take advantage of every regulation and directive to be deliberately obstructive, just as there are others who will do their best, within the constraints of their situation, to be helpful. The majority simply grow indifferent.

That is why #deathbyindifference is so accurate.  Indifference is the default setting for any institution where the majority of employees feel little commitment or calling to their work, where they are powerless to change things and/or have cut-back practises imposed upon them. Patronised (at best) by their employer through tawdry rewards and dumbed down “training”, they soon grow cynical and bitter.

No amount of external inspection or internal paperwork can safeguard clients if the workers simply don’t care. Situations go wrong because nobody bothers to check or to follow up some concern in a timely fashion, or to make sure some point of information was accurate. In the end, somebody lies dead.

In Bleak House Dickens decried the indifference of his own day

Dead, your Majesty.  Dead, my lords and gentlemen.  Dead, Right Reverends and Wrong Reverends. Dead, men and women born with heavenly compassion in your hearts.  And dying thus about us every day.

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Yet we don’t live in Dickens’s times. Change has been made for the better. It was brought about by the determination and campaigning of individuals who cared. Those who campaigned to force the law to take children out of the mills and the mines, to free the enslaved, to educate the poor.

In JusticeforLB, and JusticeforNico, we have a campaign for our own age. It is daunting and depressing at times, but we tread in the footsteps of all those who battled against the entrenched practices and injustices of the past.

It isn’t easy.

Fighting for the little people never was.

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Learning from #JusticeforLB

Open Letter to Sir Stephen Bubb

Dear Sir Stephen,

Over the past four months, as an outsider to the debate, I have been given the opportunity to listen to the experiences of adults with learning disabilities and their families.

I have learnt much through involvement in two on-going campaigns to achieve accountability in cases where young people in institutional care have died.

Much strong opinion has been expressed by those with learning disabilities, their families and the research community, that institutional care cannot meet their needs.  They argue that they have an equal right to family life under Human Rights legislation. Anything other than that is discriminatory.

With regard to the unsuitability of institutional care, I have noted these key points:

1. Inconsistencies in Care
Many people react badly (challengingly) to any sort of change, which is difficult to avoid in a staffed institutional environment. As a result they are classified as problematic, subject to heavy medication,  restraint and identification as a risk to themselves and others. This leads to long term incarceration in an institution.

2. Disregard for Family Input
When they reach 18, learning disabled people become adults, so it is all too easy for their families’ opinion to be sidelined. Their detailed, in-depth knowledge of the person’s background and needs can be ignored, undervalued or disregarded by paid carers and professional personnel.

3. Quality of Staff and Management
To put it bluntly, sadists, bullies and idlers find working with the vulnerable attractive. This is especially so when their skill set does not enable them to find better remunerated employment elsewhere.
Once trapped in an enclosed institution with no protection from family or friends, people with learning disabilities are at the mercy of such staff.

Even in a less extreme situation, being dependent on disinterested or careless staff makes life hard to bear. It also increases the likelihood that you give up trying to do the things you attempted or enjoyed in a different environment.

(Poorly motivated staff can’t be expected to make life in an institution an enabling or positive experience. Consistently good care demands staff be properly supported, managed, trained and offered a financially rewarding career structure)

The image of a small unit offering intelligent, imaginative approaches to individual care is superficially attractive, but many in the user community do not feel the same way. They want the independence, choice and individual approach that an institution cannot accommodate.

3. Waste of money
Institutional care is expensive.  If the user communities say it does not meet their needs, then the money given over to their care is being wasted or mis-spent on this type of provision. 

My overall impression is that decision and policy making bodies are seen as too limited in their vision of how care for learning disabled adults can be managed, thinking in terms of buildings and professional organisation, rather than flexible approaches to community and family based care.

Highly paid executives are also seen as remote from the realities of the lives of learning disabled adults and their families.

I would like to believe that the gap between these different perspectives is not insurmountable, given good will and honesty on both sides. 

With best wishes

Grannie