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

Hard Words For Hard Times

Life’s Lessons 4 on Playing the Cards You’re Dealt

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Bubb Blog fury erupted during the heat, thunder and lightning of the hottest days of summer.

The ghastly breakfast business appeared so superficial and insensitive to the poor and powerless on the receiving end, that it provoked an outraged response from those suffering grievously under the existing system.

It was horrendously divisive.  Charities and organisations sitting at the breakfast table were abused. How could they do it?  How could they be so remote from the concerns and experience of the poor bloody infantry?

However the immediate storm is passing and after a cooler break for reflection I’m going to say some hard Grannie things. After that I’ll shut up.

The Bubb Breakfast gang sitting down to coffee and croissants are all we’ve got. They’re not going to be moved on because we tweet and blog in fury. We’ve got to face it, they’re the cards we’ve been dealt. In the unlikely event any protest was sufficient to get somebody replaced, the replacement would probably be worse. That’s the reality of it.

People who are successes in today’s corridors of power have little time for academic research (except when it suits their agenda).
They work on business models, not those of public service. Charities are businesses too.

We have got to understand and acknowledge their mindset in order to achieve change. If our experience and study is going to have any impact at all, we need a strategy that can sell a better approach to the people sitting round that breakfast table and to others like them.

This is quite separate from the ongoing battle to bring those responsible for past and present mistreatment or neglect to account.  That is a long legal process to which everybody supporting JusticeforLB and JusticeforNico is committed.  But let’s not fool ourselves. This will be a matter of years.  It will be blocked, stalled and evaded at every stage.  Every dirty trick in the business will be employed. 

But if we stick to it doggedly, the impact of success (however long it takes) will be profound.  All of us, who know from our own families and friends of the huge deficiencies in care, recognise that until senior persons answer for this through due process of law, unacceptable practices will continue.

We need a two pronged campaign, one part to systematically publicise and promote best practice to the people who have the power to make policy decisions, and the other to continue to pursue those responsible for past malpractice through the courts.

So over to you, folks. 

I’m old and out to grass.

“God Bless Us, Every One!”

Life’s lesson 4 on What doesn’t change and what might

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As a child I had to learn large chunks of the King James Bible off by heart. It was quite common in the Scotland of that day. As a result I still carry the echo of these around in my head.

One day I was on a train going to some conference or other on change in the public sector.  As I half-heartedly scanned the conference papers, all of a sudden one of those echoes slipped into my mind.

“The poor you have with you always.”

I had always felt this was a rather ungracious comment for the saviour of mankind, but all of a sudden it fell into place.  Not just the poor, but the learning disabled, the sick, the neglected, the old and the despised.  All the vulnerable populations in any society. Every generation and community has to choose how they treat their weakest members.

That’s something that doesn’t change.

Another echo I carry around in my head is of the literature I had to read at school.  A lot of it is just too long nowadays, but before digital technology and wall to wall entertainment, there was more time to fill.  Now I’ve gone back to the great Victorian writers in audiobooks.  They’re particularly clearsighted and scathing on the dark side of politics, business and charity.

That’s another thing that doesn’t change.

So why are we so surprised and hurt that we still have to fight the  injustices in our own society?

I suspect it’s that we swallowed our own post World War 2 publicity. We thought things were changing.  People were better off, healthcare was much improved and more accessible, secondary education was universal.  We all had more stuff.

We overlooked the dark side.  The increasing power of the state, the surveillance and intervention of officialdom in aspects of life that had previously been a matter of personal choice.

No wonder so many of us feel guilty and unhappy about aspects of our work. We’re the Bob Cratchits of today, sitting shivering at the modern equivalent of the clerk’s desk , at the mercy of a corporate Scrooge. And our Scrooge isn’t going to be visited by the three ghosts of Christmas. Our Scrooge is hanging on to his money and looking to make more.  Tiny Tim is going to his grave.

But I sense we’ve reached a tipping point. Too many articulate, educated, stroppy people are now affected. Government, local and national, might get away with fobbing off the poor with crappy services. Hampered by lack of education and resources, they’re too disadvantaged to put up much of an organised fight.

It’s organisation and persistence and ingenuity that is dangerous to the corporate Scrooge. It’s the sustained guerilla campaign that undermines, as it increasingly gathers support from a disgruntled, disparaged citizenry. 

That might just tip the point in the right direction.

That might just make a change.

Lesson 107 The Disappeared

Lesson 107 on Being seen and heard

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One night, quite out of the blue, my daughter, by this time grown up, had a seizure when she was out. Her friends, who were much more sensible and competent than I would have been, got help and managed to contact me, but they didn’t know what hospital they were being taken to. They said they would let me know as soon as they could. It was before mobile phones.

As I lay awake, waiting and frightened, I had a sudden memory of the mothers of The Disappeared – the many, many women of South America whose adult children had been seized in the past by the political regime. The mothers whose lives had been spent never knowing where their children were or what had happened to them. Every year they gathered with photos of their sons and daughters to stand in silent testimony to show the world that these children had existed and been loved and mattered. They mattered.

In fighting for Justice for LB we are witnesses, but persistently noisy ones, to another kind of disappearance.

Because Connor and Nico were meant to disappear. An implacable authority, with plenty of resources to cover its tracks, tried to bury them too, but in mounds of spin and jargon and callous disincentives to their families to keep them alive and seen.

We fight for them, because they mattered.

We fight a system that increasingly seeks to disappear its most vulnerable members. The elderly, as well as the dudes and dudettes, are locked away, without respectful care and human consideration, denied treatments they need to keep them healthy, ultimate condemned to die.

However much this is dressed up in glowing vision statements and shiny aims and empty “consultations” and mutual back slappings for meeting “targets”, that is what is happening.

Yesterday I blogged about living in two cultures, but in only one do I feel valued. In the other I feel increasingly invisible, without worth and disregarded as an older person.

In the first one evening, I caught the last local bus home. It leaves quite early around 10.30 and its terminus is Magaluf. It was a bendy bus full of noisy teenagers, as you would expect, off for a good night out. But as we made our way apprehensively up the boisterous,crowded aisle, two lads immediately gestured to us to come and take their seats. They spoke to us cheerily, treating us simply as fellow human beings, not as old nuisances who should have been penned up in their homes out of sight and mind.

Today we think of Connor and Nico, of their lives, their families and their all too preventable deaths. But they stand for all the others with names known only to those who loved and cared for them.

All the others, young and old, our present system seeks to disappear.

Lesson 106 Corruption

Lesson 106 on Learning from contrast

Living between two cultures is odd. Things that are taken for granted in one are unacceptable in the other.

I was thinking about this today, as I was stuck in an hour long queue at Gatwick passport control. I had come from an airport where the border police just looked at the holiday making families with little children and the old age pensioners fussing over where they had put their travel documents, and waved them through. 

I was thinking about LB too, as we reach the 107th day.

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In my second culture, corruption amongst politicians and government officials is accepted as a matter of course.  One local mayor, having been found guilty of a huge fraud involving public money, was freed on bail pending an appeal.  He retained his passport. The local paper reported without a hint of irony that that the judge considered this no risk, because “he was a person of integrity!”

As an innocent brought up in Dixon of Dock Green Britain, it is an eye-opener to experience a society that shrugs its collective shoulders and recognises that bad things happen because people who should be honest and committed to the service of others, are corrupt.

It hit me again that what is so hugely hurtful in the struggle for Justice for LB is the bland corporate pretence that their hands are clean, that everything is fine and dandy, that anyone who protests or thinks otherwise must be misguided, stupid or unhinged.

It is this Alice in Wonderland situation which is so appalling and cruel.

The fury that has pulled so many different people into LB’s campaign, springs from the conviction that what happened was just so glaringly wrong. That a system that tries to pass it off as merely “unfortunate” is deeply corrupt.

We can’t countenance the sham of a flawed organisation protecting its interests by picking on the victims of its negligence.

In the heart-felt words of all my fondly remembered pupils

“It isn’t fair!”