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No More Magic In The Moonlight

October 29, 2016

By rights, I should be typing this post whilst flying across the Atlantic. A trip to Iowa to express my rage and launch a single solitary protest in the small hope that people might come.

Yesterday, I watched a 2014 documentary to mark the 25th anniversary of the film, Field of Dreams. You may recall that it is my favourite film of all time. 25 years on, no other movie has come close to toppling it from the top of my hit parade. When the ghostly Doc Graham asks the question, “Is there magic out there in the moonlight Ray?”, I shout a resounding “Yes”. When I tell the Get Steven Home story, I always mention the night, two days after launching the campaign Facebook group that 2500+ people unexpectedly pitched up in the group, lending their support. If you build it, they will come.

There was a scene in the documentary of Kevin Costner, returning to the farm/baseball field 25 years later. He told the story of how, on the last day of shooting the original film, he said to the farmer who owned the farmhouse and the land – “I wouldn’t be in a hurry to tear up the baseball field and plant the corn again. Something could happen here. I would just wait…..” At that point the camera panned back to reveal that 25 years on, the baseball field was still there. And families were sitting in the bleachers enjoying a picnic. Fathers and sons were in the diamond having a catch. The interviewer spoke to some of the families, who called their trip “a pilgrimage”. Sons talked about how for the first time in years, playing catch in the field made them feel connected to their fathers. In the last 25 years, hundreds of thousands of people had come. And as Shoeless Joe had suddenly been illuminated in the film, as the floodlights were switched on, broken families began to feel the magic in the moonlight and start to repair.

As the credits rolled on the documentary, a voiceover announced that the farmer had sold the farm and the field to a major entertainments company and their plan was to rip it all up and build a huge stadium complex, which would incorporate nine baseball fields. NINE. Bang goes the magic.

I felt furious. It reminded me of all the good ideas in the social care field that get manipulated and abused by people with no idea of magic but plenty of idea that money means everything. Once upon a time, for about 15 minutes, a person centred plan might have been a good idea. Certainly if the concept had been built on the ideas of Carl Rogers, it might have remained a genuine organ of good for people. Chance would be a fine thing and now person centred plans are used to send people away from their families and into ATUs. I regularly discuss with Graham Enderby how the Deprivation of Liberty Safeguards have been distorted to a stage where they are now a million miles from their original intent. They arose out of a desire to protect dudes like HL and stop the horrendous imprisonment that many people with autism encounter. They are called safeguards and in Steven’s case, along with the Human Rights Act, were the mechanism by which he was released from an unlawful detention. Nowadays, the DoLs are just as likely to be used as a means to detain people. As Graham said the other week – “They should be about getting people out. Now they’re about keeping people in”.

I have to admit to feeling disappointed in the aftermath to the recent 7 Days of Action campaign. For me, the telling of the stories was about capturing the magic of being a human being. I’m a firm believer that the magic is always found in the minutiae. Little tales from the lives of the dudes that have no consequences but are huge reminders that we all have a soul. When Steven was in the ATU, I told the managers about how we used a Proclaimers joke that Steven used to tell to diffuse a situation where he might be getting aggressive. A few weeks later, I was horrified to see that they had used the joke in Steven’s “Risk behaviour management plan”. They may have meant well but it killed the magic. I can’t even remember what the joke was, 7 years on, because Steven stopped telling it. Life and love being sucked away by a bureaucratic vampire. I’m probably hopelessly naïve but I feel that the only way that the scandal of 3000+ people held in ATUs will ever break into the wider consciousness is by the telling of their stories by the dudes themselves. Watch the campaign film and listen to Eden on the phone to his mother and then try and “other” Eden as a non human. You’ll find it quite hard to do.

I know as I write this that I may piss some people off. How can I be comparing a film with real lives? One of the weird things for me is trying to understand the nature of the reality in my original point. A film, a made up story isn’t reality. But the aftermath of the film created a reality for thousands of people. An unreal film set, set in a real farm, became a real place of pilgrimage. How much of a head fuck is that?

So sorry if I offend but back to my comparison:

Nine fucking fields.

Residential homes for 36 people.

ATUs with 1800 beds.

It’s all the same thing. I don’t know what else to say.

I’ll leave it to Terrence Mann:

 

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From → Social Care

22 Comments
  1. johnpopham permalink

    You are so right, Mark, that the best way of changing things is for people to tell their own stories. I fear, however, that systems are not necessarily geared up to listen and to take action as a result of what they hear from stories. I come across people all the time who seem to have had common sense trained out of them, and who work as if following processes and ticking boxes are all that matter. I am determined to help people tell their stories, but we need to change the system so that it is able to listen and take account of them. Step 1 is to get hierarchies to recognise that people need a voice and that they are the best placed to assess their own needs. Step 2 is to make sure that voice is heard.

    From my point of view this even extends to recognising that watching videos (of people’s stories) at work is a legitimate thing to do.

    • simone aspis permalink

      And the people who have been oppressed by the system to be leading the campaign – disabled people, black people, LGBTQ people and women did not achieve the gains they have without them leading from the front – so its not simply about US telling OUR own STORIES for others to INTERPRET as they see fit and decide cause of action for the oppressed.

  2. Person centred as in Carl Rogers would be great. Although I for one would struggle expressing my unconditional positive regard for the local SEND team.

  3. LizzzieD permalink

    Two things I have read recently have enraged and bewildered me in much the same way. Yesterday, on Twitter there was a link to a CoP case. It was quite a complex case – partly, as you refer to here, using DoLS to deprive someone of the liberty to live where he wanted to. Short version: Social Servicess claimed the only way they could provide care at home was through an agency that would charge £9000 a week, and they couldn;t afford that! Of course they couldn;t – but was that really the only option? Nearly half a million a year – bet both you and me could do better than that.

    The second thing was an article in the ever sunny Guardian Social Care section about how to make personalisation cheaper. The main problem, it said, was to make sure that people running personal budgets spent the money appropriately. Really? Is that the main problem? It is quite expensive to shift responsibility onto the people – like you and me – providing the care and doing all the admin and then employ lots more people to make sure we are doing what we are told to do. This articles had several suggestions as to how personalisation could be made easier and cheaper for LAs,more profitable to those providing it, not much about how it could be made better for us and our charges.

    It isn;t just our stories that don’t get listened to. The “us” and “them” seem to be occupying different planets these days.

    I am not much of a believer in magic – but human common sense and mutual support, understanding, might just accomplish things that would seem like magic in the present mess.

    But not while there is money to be made from nine pitches.

  4. weary mother permalink

    Johnpopham

    Hello

    No idea if you are from the population paid to do it to us – or are in/of our world.

    I have been in both places.and I left the first as fast as I blooming could to begin to try to change things.

    Both.contexts are awash with our stories. The only deaf ears are on the paid side – and the higher the pay and the status the greater the hearing loss. There are also the few people who appear to enjoy the suffering they impose on us and ours and imposing this suffering even on lower pay is reward enough. We – in both our our worlds have all met them.

    All of the professionals paid – are happy to have a day from the office to attend conferences and listen to ours stories – all were trained on our stories. Conferences where they spend most of their time chatting to chums – where weary families find yet more (unpaid) time out of the scarified existence from where these stories emerge – offer again and again- to bare more scars – more sores and more pain – and give -more energy to relate their story – hoping – that their stories do not this time once more leave the conference to be binned when train leaves the station. We do it for our beloved boys and girls – and the deaf – on another day out – do it for a salary.

    The people who are responsible for the plight – misery and a non life of people who languish in the community in the barren rooms with minimum support and who have no life at all – or who are drugged and frightened and cry for;mum and dad and their pet dog hundred of miles from home in the ATU;s are in there – get there – are put there – by people paid to do it – and who all say ‘it is not me guv. Not me. Tell me your story – again.

    Seek more stories from people who are not ‘us’ the paid – seek stores from the people who need less lives – people who gave birth to people less than us ?..- ‘ Tell me your story’ ‘ again. And all will be good …

    Just need another story.

    .And then ‘we’ – the paid others- will keep on doing just the same- as now – for ”it is not me guv -for – I – me – am only doing my job’. Guv.

    All who take the ‘care’ cash to buy their own fulfilled and full life – by imposing a hell on other peoples sons and daughters – hell lives that they would never accept without a full on fist fight to protect their own – from. – .are responsible. If you are not resisting it every day challenging this every day – refusing and not doing it every day… it is you….

    .’Guv’.

    It is you and your story we want to hear. For how do you live with yourself.

    You know our story.of by heart, Tell us yours.

    • Pauline Thomas permalink

      Wonderful stuff Weary Mother and so bloody true.

      Let them stand in our shoes for just one week. one day or even one hour and they might just learn how it feels to be tired, worried and scared of the future

      Alternatively let us all stand in the shoes of our sons and daughters with a learning disability and experience what their lives must be like. I would hate to be living the life my son has to endure. His life is not ‘user led’ as we keep being told but it is ‘service led’ Let there be honesty among the NHS/Social services. If money, staff or even space is not there then how in god’s name can there be any ‘real choices’ or ‘person centred planning’ for our sons/daughters?

    • Our stories should be private, unless in a legal case – but they often are grounds for legal cases.
      The ‘paid’ listen to stories at conferences, probably already knowing similar stories.
      Some of the paid do care, because they also have experiences. I’ve known a few on the highest salaries step in, but yes, most don’t. Just one very senior person can make positive lives happen.
      The other paid protecting their own, while feeding off vulnerable children, shows how easy it is to look professional.
      At conferences many meet others also not doing their jobs, and yes, forget stories by evening, and women professionals can be worse than men.
      Why not have stories on television, like Channel 4 News’s old video box, so no repeating is necessary, or video ourselves with updates?
      It looks good for funding that someone told a story, attendance points for just listening, pledging to start another initiative, because they have to justify the cost.
      That money could go to advocacy support for people and families.
      We need case studies, story tracking, conference outcomes tracking, if anything. Tracking would reveal the good from the bad paid. It can’t be endless ‘tell us your story from the start’. Not to strangers all the time.

      • weary mother permalink

        I agree

        But no good if we families are the only ones to be affected by our stories. We know them all by heart….and by brain and bruises.

        Love to hear story from ‘the others’ who continue to do what they do to our children – knowing – seeing – hearing – that they hurt them..? ‘Pays the bills’ …..is not good enough .surely ?

        For all are trained in the Statutes that they bend so easily and or completely disregard ?

        Or…..if they would not entertain the same non life – brutality and misery allocated so casually to ours – being imposed on their own ? And all in the lie called ‘care’,

        ……..and ‘only doing my job;…am ‘only a cog in the wheel’ – has history. and lots of stories…….

  5. LizzzieD permalink

    I am so with you, weary mother. When I read those Guardian articles where “they” congratulate each other and the “clients” are so passive and grateful I sometimes wonder if I live in a parallel universe. SO smug and certain that the latest theories equip them to know SO much better than we do.
    …another weary mother, who has maybe been luckier – but no thinks to “them” to be honest.

  6. Shirley Buckley permalink

    Martin’s story. Born 1976. Diagnosed Lennox Gastaut epilepsy 1978. Court of Protection October 2007. Declared to lack capacity in all areas. 2008 Court Order to move to a residential care home in Wales. From then on deprived of his liberty without authorisation until 2014 when standard authorisation put in place, renewed yearly since then. Both the RPR and the LA refuse categorically to allow him to appeal the dols. In 2014 the DWP and the LA over ruled my EPA, ant the LA is now his appointee. In 2015 the LA decided he was no longer eligible for continuing health care, and will not accept my appeal. Martin has always had capacity, although it fluctuates. WHO CARES?

  7. weary mother permalink

    We do Shirley xx

    • Me too! It is worrying how LAs have managed to take appointeeship or deputyship when they get challenged. This isn’t the first time I’ve heard of this and it’d be interesting to see if these can be challenged legally? Martin too should always be included and they should be trying to help maximise this… It seems against natural justice if DOLS is not be appealable – have lawyers looked at this?

      • Shirley Buckley permalink

        Rosemary Lawyers, barristers, judges, legal aid – ha ha bloody ha. Read Finola Moss on the illegality of the Mental Capacity Act. All I ask of those who care is that they publish far and wide only these few lines – nothing more – Martin’s rights in brief.And thank you from me and Martin

  8. We need better policing of DOLS by families, providers (good ones need sharing!) and IMCAs (also the good ones need sharing!) but also we need to start policing what’s happening with LA cuts as they try to “share costs” by reverting to blocks of flats….. ?are these sheltered housing flats no longer fit for use and needing either re-modelling or finding another use? Yes – that’s the risk but not completely – in Community Living we are holding a story about the new institutions being built in the name of “person-centred” with LA’s collusion. (Sounds like we need planners on board?) Pretences that people don’t want to share (one quote from R… LA trying to justify their wish to transfer people from supported living into sheltered housing or residential care…..) Make sure people’s tenure is assured to help retain their rights!! But fancy defining supported housing in such a limited way…. support to people’s tenancies or shared or owned housing isn’t owned by LAs – it’s owned by the tenants. “Placements” shouldn’t be so – it should be having a way to advertise vacancies so the people, families and others can (like the rest of us) go and see and meet people, or find ways to meet people who might be co-tenants if they want this/ get a tenancy from the housing list…. However, read our article – ‘Can we learn from the past’ to see the next developments across the country happening before we’ve had the chance to counter this, with LAs signed up to 14-18 blocks of flats for people with l/disabilities but in some cases mixed with some for people with mh problems or challenging behaviours – the new institutions in the making with we know what will be less individual support and more “shared support” as the motivation is about reducing costs. Not only will this keep people apart but also keep the community away. We need to educate commissioners not to take the easy way out but look for more inclusive models (like within already populated flat blocks/IAs designed shared with other lets). As soon as we design segregated settings we have anything but person-centredness! I’d think if this traps people in their flats, this could be a challenge on DOLS – maybe we need some individuals who end up in such congregated settings to get legal help to challenge the “model” as NOT the least restrictive setting and courts to get expert help in to understand the alternatives and understand how people who have apparently “challenged” manage to live successfully in the community with decent access, if they genuinely get “person-centred” support and environments. We should also learn from Jack whose 1st placement in the community (which felt badly done and one like me suspects was this to prove he “needs” institutional care” which but for mum could have happened?) However he was moved into a flat….. and he felt it was just like being in the hospital… enough said. People themselves won’t be duped. They know what’s being done to them… so we should learn from what works and to listen to the real experts not driven by cost first and not decide battery farming is the answer! We have to keep trying to speak out! Keep on keeping on Mark – thank you and the 7-Day action group. http://www.cl-initiatives.co.uk/community-livings-autumn-issue-just-not-late-subscribe/and take heed

    • People themselves won’t be duped – that is so true, that they even lose life or limb expressing themselves.
      The paid still don’t care about the story, so how do we shame the paid? Who just want their bills paid (at such cost)? Unfortunately we must talk, although which of us wouldn’t love a private life again?

  9. Pauline Thomas permalink

    Some years ago I helped out a local Gateway Club. My son used to be DJ there with his dad.

    I helped out on the tea and coffee bar. One night a young support worker, a bit of a ‘jack the lad’ came over to buy a tea and a chocolate bar for one of the elderly men he was supporting. I gave him the chocolate bar but noticed it was broken. I said ‘let me change it’ “Oh! don’t bother’ he replied “he won’t notice” and with that punched the bar until it was broken even more ‘he will eat anything’.

    To my utter shame I said nothing. It still haunts me that I did nothing.

    However it reminds me of that some people, often people higher up the power ladder, still believe people with a learning disability really do not deserve to be treated like the rest of us. That is being given respect, dignity and kindness.

  10. weary mother permalink

    Pauline

    It has never entered the consciousness of too many in the ‘care’ business,.that other peoples vulnerable sons and daughters – .

    …..keep their own children – well housed -, well fed – well educated…and well shod.

    As a student I saw one lady in an old bin/hospital fed boiling food immediately followed by ice cream …..to the amusement of staff. They called her ‘old asbestos mouth’ I complained.

    Don’t know what happened when I left for lady still there…and staff still there.

    In a day center not sugaring the communal tea pot was recorded as an improvement in care.

  11. intended segregation in the community for anyone with support needs is blatant , locally 36 units for vulnerable people with extra support needs ( physical disability ,learning disabilities and mental health conditions ) 41 units for the frail elderly . Both LA controlled , both a comfortable distance from town and planning approved.
    Major redevelopment of general housing in the town itself but no requirement to ensure a percentage of lifetime homes/ wheelchair accessible properties were planned. Fail to find the support on offer in the’ purpose’ designed accommodation sufficient for your needs and your home is no longer suitable for you.
    I can think immediately of three people who have all had their stories heard by those trained to listen , it will not stop those same attentive listeners from shipping them to God knows where in the future because their support needs already exceed that on offer in the 21st Century vulnerable persons block.

  12. Shirley Buckley permalink

    Mark Can I just repeat what I wrote above – will you all please see that Martin’s story is spread far and wide. I hope sometime to have my own blog, its on the list – in the meantime I need for Martin to be named every time DoLs etc, are mentioned. All is in the public domain.

  13. weary mother permalink

    …..apropos not much..

    had a very odd phone call the other day…

    There is a scam – based in India I have been told…going round.

    They pretend to be from Microsoft and they say they need urgent info on your computer. Even if (as my sister said truthfully) you don’t have computer they will insist that you do.

    I told my ‘Microsoft’ caller quietly to go away. and I put phone down. It immediately rang again and I ignored it. Phone went to message where Asian person was screaming top of voice ‘just answer the F’ ing phone !

    He must do dozens of similar calls with nil result (hopefully)..And on my call he just let rip.

    I had another failed go at getting some answers – sought for months from LA – today..I now understand how scammer feels/felt.

    • johnpopham permalink

      I have come across cases in my digital inclusion work where such people have been successful. They prey on the vulnerable and the people who are drawn in are those least able to cope with the consequences

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